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This is the diary that Joan wrote when she was diagnosed with 
Acute Myeloid Leukaemia in 1993

Introduction:

It is now 9 years since I was diagnosed as having acute myeloid leukaemia.

The idea of writing a book came to me very early in my illness. It was to be a way of sharing my experiences with my husband Iain.

From there I had the idea, maybe this could be a way of raising funds for Leukaemia Research.

As my treatment progressed I was constantly aware of God's presence and love, so it is also an account of my spiritual journey.

Above all I write with gratitude for those who have supported me with their love, encouragement, professional skills and dedication and so have helped me in my fight against cancer.

Chapter 1

It all seemed to begin in April 1993.

A strange swelling had appeared on my upper gum, it didn't hurt at all, it was just there. I rang the health centre, asking if it was a problem for the doctor or dentist and made an appointment with the dentist for April 29th. Iain was having an "away-day" at Wrotham so had taken the car.

It was a lovely, sunny morning as I walked to the health centre. Jane, my dentist, gave me antibiotics thinking it to be an infection.

I caught the bus to Canterbury. Enjoying the ride, chatting to an old lady, who was obviously lonely, about her prize onions. I decided to get off the bus at the East station and walked through Rhodas Town, along the alley way I'd used so many times as a child to get to my Granny's house, over the "Cradle Bridge", up Nunnery Road, into South Canterbury Road and so to the hospital where I worked as the teacher on the Children's Ward.

Nothing happened to the gum!

On the morning of Tuesday May 25th we were lying in bed, awake early and talking, I put my hand to my left breast and felt a lump....panic! I don't know how long it had been there, I don't check myself regularly and after all it doesn't happen to you does it? I debated about not telling Iain, he was having problems at work and with his ex-wife and their settlement, but quickly decided that we were, after all, married and should share these things. I didn't want to repeat the mistakes of my first marriage, keeping things to myself and not sharing .So I told Iain and he agreed there was definitely a lump.

I rang the health centre at 8.30am and managed to make an appointment for 11.30 that morning. I went to work telling them I'd be leaving early. Our G.P. was very re-assuring, saying it felt very non-malignant and not to worry.He made an appointment for me at the local hospital for Wednesday June 2nd, where I saw the surgical registrar - she was extremely pleasant, 99.9% sure it was a cyst and made arrangements for me to have a mammogram.

Nothing had happened to the swelling in my gum and after watching an article about dogs going to the dentist on "Newsround" decided maybe a return visit was in order.

Jane tried to drain it, but it only bled. She prodded and poked and was generally puzzled. I remember her saying, "it's not a tumour." Alarm bells started ringing. I told her about the lump in my breast, somehow I knew there had to be a connection. She gave me a letter for the Maxillo Facial team at the hospital.

My mammogram was set for Friday June 4th. Iain came with me as we were going to the New Forest for the week-end and he had the day off. The mammogram was amazing, really making my small boobs look enormous! We went and had coffee in the "Three Bears House" with my friend and colleague, Denise before setting out for our hotel, forgetting all about the lumps and swellings. It was certainly a wonderful week-end; the sun shone, we walked and hired bikes in the forest, we swam in the hotel pool and ate and drank too much!

Iain came with me for my second appointment with the surgical registrar on Wednesday 9th June, (the first anniversary of his father's death). I was very anxious, knowing she would try to aspirate the lump and expecting this to be painful. I was in and out in fifteen minutes she had not been able to aspirate anything from the lump, so arrangements were made for me to be admitted to hospital for a biopsy. She was still confident it was a cyst.

On arrival at work the following morning, the clerk from Bell Ward, where I was to be admitted, had already rung down for me to be clerked, prior to my admission on June 18th.

I was terribly tense and anxious during that week, it seemed irrational as I'd had a D. and C. the previous autumn and quite enjoyed the experience. Why should this be different? I bought some "Kalms" on the advice of my colleague and friend, Lesley, these seemed to help. I wasn't sleeping well: drinking tea at funny times and hearing the near-by church clock rather too much in the "wee small hours". My bones hurting, my collar bone and ribs particularly and my legs were aching. I was waking up at night sweating and seemed to be getting indigestion, which was most unlike me, Iain had often called me "boiler guts". I was needing to dash to the loo, almost wetting myself sometimes!

I was in the process of making some new curtains for the sitting room and they seemed terribly heavy. My arms seemed weak, which made it difficult to lift them. It seemed hard work shaking the duvet when making the bed.

I had managed to bring my appointment with the "max-fax" team forward to Monday June 14th. I had an x-ray and saw the Senior House Officer, we had the usual run through of symptoms, he didn't think the breast lump was in any way connected. He examined the gum. The Consultant came and addressed the back of my head, rattling off some diagnosis or other that I did not understand and arrangements were made for me to have a biopsy under local anaesthetic on Friday June 25th. The thought terrified me and I begged and pleaded to have this done at the same time as the breast biopsy under general anaesthetic. It seemed that this was O.K. in principle but in reality there was only one S.H.O. scheduled for clinic at the time and under the "Patient's Charter", he cannot be more than thirty minutes late for clinic. I rang my dentist who assured me that it would be no worse than having a wisdom tooth removed.

Iain had the day off work in order to take me to the hospital on Friday June 18th.

We had to be there for 11 o'clock, having starved myself from 7 o'clock. We parked in my usual spot and went to the ward. Colleagues from Children's Ward had already bought me some flowers. We waited in the corridor for a while before being shown to my bed. The ward sister took my details. The surgical registrar came to see me explaining the procedure. We were a little disappointed to realise that the results of the biopsy would take two weeks to come through.

The anaesthetist arrived, I was a little indignant at only seeing the S.H.O.- last time the consultant had seen me! However she was extremely kind. She asked about the bruises on my leg, one I'd gained the previous day ,walking into a bed rail, some were from the launching trolley for Iain's boat, the rest I wasn't too sure about. Sister was reluctant to give me a pre-med as it might make me too sleepy and preclude me from going home at 5 o'clock as planned, the anaesthetist thought it would be a good idea seeing how nervous I was.

I was wheeled to the lift, only to be taken back to the ward as the necessary papers had not been signed and this couldn't be done in the lift. This done I was soon on my way again and Iain went home.

I remember waiting outside the theatre and the staff being told to look after the teacher.

I can't remember much else until I was back on the ward. My bed was next to the nurses station. I overheard a telephone conversation. It seems there was some abnormality with my blood. I was not to leave, the consultant haematologist was coming to see me. I asked the nurse to ring Iain and ask him to come to the hospital straight away and not to wait until 5 o'clock. I wanted him to be with me when the consultant came.

All manner of things flashed through my mind. Was I anaemic? Could I have A.I.D.S?

Chapter 2

The consultant, Yvonne, and her Senior House Officer, Richard, arrived before Iain. Curtains were drawn around my bed. She didn't wrap it up in flowery language, no maybe's or we think, but straight to the point,

" You've got leukaemia,"

" but how can you tell? I thought you needed a blood test, I haven't had a blood test."

She indicated the small round plaster on my right arm. The anaesthetist was suspicious about my bruises and had taken a blood sample whilst I was still asleep.

Iain arrived, I was crying, numb, yet in a way relieved. This explained the breast lump and the gum swelling, there was a connection.

Yvonne asked what I knew about leukaemia. I had taught several children with the disease, including an eight year old boy called Clifford. He had a bone marrow transplant and is still "doing fine". In a sense this cushioned me from the seriousness of the diagnosis. Leukaemia in adults, it seems, is much more serious,particularly the strain I had.

Arrangements were being made for me to be transferred to a side room on Treble Ward. As I was pushed away in a wheelchair I asked to see Helen, the Chaplain. She was comparatively new to the hospital, but I had met her several times on Children's Ward and had immediately warmed to her

Treble Ward was a general medical ward, it was light and airy, with pretty, flowery curtains. It was arranged in five bays, each with four beds. The two side rooms were in the middle of the ward, opposite the nurses station. I suppose it was about 6.30 when I arrived as supper was just finishing.

Iain went home to break the news to my sons, Tom (20) and Chris (14) and his son James (17). He packed an overnight bag as he had decided to stay the night with me in hospital.

Helen arrived about 7.30. I told her of my diagnosis and we talked. There was a television and video recorder in my room and I remember saying the only video I wanted was the "Three Tenors Concert". This was the first of many symbols of hope- Godincidences even. Jose Carreras had leukaemia and that concert had been organised to raise funds for leukaemia research. Helen left me with the text from Exodus 14 verse 14:

"The Lord will fight for you, you need only to be still."

I don't think we slept much that night, we were both in a state of shock. Children's Ward had sent a chair-bed for Iain to sleep on. We had countless cups of tea. Sometimes I felt I needed space, to take in what was happening, sometimes I needed Iain close to me for support and reassurance.

On Saturday I was to have a Hickman Line inserted into my chest. This consists of a small plastic tube, with two openings or lumen which would be used for blood and platelet transfusions and blood tests, the latter would be done daily so this clever device would save the discomfort of many needles! Clifford had been very relaxed about his line. I'd seen it and realised how useful it was for him so didn't feel too alarmed, but was worried the operation to put it in place might be painful. It hadn't been decided whether a general or local anaesthetic was to be used, so I faced another day without food. No one knew what time it would be done as at weekends only one theatre at a time is in use.

I had a bath and felt rather a fraud wandering round the ward: I didn't feel ill. I was told to keep away from the sluice and lavatories because my low white count meant I was likely to pick up infections very easily. I was given a jug to wee in. Measuring my fluid intake and output was to become part of my routine during my periods of hospitalisation.

I was wheeled on a trolley to the theatre in the early afternoon. A local anaesthetic was to be used so I was wide awake. I remember how much more relaxed everything in the operating theatre seemed compared with the previous day. A tape of the Mozart clarinet concerto was playing. Before the procedure could begin I was given four units of plasma, this took some time and as I was still lying on the trolley, resulted in an aching back. The local anaesthetic was administered and although I was aware of the line being pushed into position it was not painful, until it was stitched in place as by this time the anaesthetic was beginning to wear off. Then an x-ray was needed to check the position of the line. Eventually, still on the same trolley, I was taken back to the ward. My bed felt very comfortable but after two days without food I was ravenous and sent Iain out for a McDonald's. It tasted wonderful!

In the days that followed the nurses and doctors explained leukaemia to us. Often known as cancer of the blood there are many different types. Acute Myeloid Leukaemia is the most common type affecting some 2,000 adults every year. There is an accumulation of abnormal white cells in the bone marrow which do not mature and so take over the normal cells. When the bone marrow is so overrun by these leukaemic cells the disease becomes apparent. Fortunately some normal cells remain.

I would be given chemotherapy to kill the bone marrow cells, both the good and the bad. When the bone marrow is empty the good cells grow back again, usually these grow more quickly than the leukaemic cells. The treatment which would take six months to complete, would involve four courses of chemotherapy. We were told that as the bone marrow recovered I would be at great risk of infection. I would need to be isolated in my room. There was so much to take in: we didn't realise that in between each course of treatment I would be allowed home for a few days whilst my system recovered. We thought that I would be in the same room for the entire six months!

Tom and Chris came to visit me. From my room I could see a little way down the ward. I felt extremely proud of them as they arrived carrying flowers, obviously anxious about what they would find. Chris went down to my office to collect some bits and pieces to make my room more personal.

That evening Nurse Moira came and told me about the patient in the adjoining room. It was Phil , vicar at nearby Seasalter, I knew he was ill but hadn't realised how seriously. Somehow his presence there filled me with warmth and hope.

I recalled one of his first services in Whitstable. It had been at a Team Eucharist when all the local churches met together. The Communion was distributed at various points around St. Peter's Church. Phil was positioned near the font and we stood to receive the Sacrament, in so doing eye contact was made between celebrant and receiver and a smile exchanged. I found this a tremendously powerful experience, one which I now try to repeat whenever receiving Communion.

My next encounter with Phil was when he preached at All Saints' Church. He was extolling the advantages of the Team Ministry which we enjoy in Whitstable, describing how each member of the team brings their own different strengths. He felt his strength was sinning!

He had written the Editorial in the Christmas church magazine answering the question, "Why do Christians Suffer?" pointing out that Faith in God does not act as a lucky charm protecting us. Not even Jesus was exempt from the pains of this life.

Finally Phil gave, what must have been one of his last Blessings, at a Praise Service, which we attended at All Saints'. Now he was dying, but in some strange way his dying seemed to indicate a way forward and life for me.

The next morning I had my bath, feeling weak and shaky. I was worried about keeping the line dry. Iain helped me. It was almost an act of surrender, I felt totally dependent on him, in a way I'd not known since my childhood.

Being Sunday Helen brought us Communion. I searched for words of comfort in the Gospel for the day, (John 15, 5-11) but at that time could find none.

A succession of friends visited me. Carole brought flowers: she was visibly upset and busied herself arranging them. I found out a long time later that her mother, in the States had been diagnosed with cancer the same week. Jean brought a plant. Avril brought beautifully arranged fruit and some books to read. Marion brought pretty yellow rose-buds. By this time I had so many flowers Iain took them next door to Phil and his wife Lizzie. Several nurses came up from Children's Ward, offering to do my washing.

In the afternoon my parents came. I can't begin to imagine what they were feeling. My dad's eyes darted round and round the room, never settling on anything. My brother later described him as "defeated". We have never been a family good at expressing and showing our emotions. My mother gave me a card which showed me that her Faith was helping her at this difficult time. In the form of a book it had tranquil photographs and comforting words from the Bible.

Early the following week I had a bone marrow biopsy in order to determine which sub type of leukaemia I had. This was an incredibly painful process, even with a local anaesthetic. A small needle is inserted into the cavity of the pelvis and a small amount of marrow is removed by sucking it into a syringe. Subsequent biopsies were less painful!

A beautiful basket of freesias arrived from Marjorie, a retired colleague, bearing a note saying, "positive thoughts always". I remember focusing on the flowers and those words many times during the next few days.

Christopher, our vicar visited me and anointed me with Holy Oil, a sacrament of healing. I particularly like this prayer from the service:

The Lord God will be

within you: to strengthen you

outside you: to preserve you

over you: to shelter you

beneath you: to support you before you: to guide you

behind you to steady you

roundabout you: to secure you.

It left me feeling very peaceful.

There followed a period of maniacal activity on my part. I'd been told that I was prone to infection so everything around me should be spotlessly clean. I had Iain bring in J-cloths and Jiff cleaning fluid and had him cleaning the walls and paintwork. I wanted to see the Domestic Supervisor. I had things brought from home to make my room more comfortable, pictures, radio-casette player, tapes, pens, pencils even my own pillow. The boys brought in photographs they knew I treasured. I had decided that if this were to be my home for the next six months I would set to and make it just that, rather like Noah getting his ark ready for the flood. I wanted a noticeboard for my get well soon cards, not the usual washing line style string which was the norm so I wanted to see the hospital carpenter. So it went on, I had a pad of "Post -its" on my locker and made lists for everyone of things I wanted done, things I wanted brought in, things that I had to say.

I knew that in a matter of days, as my white count fell and the chemotherapy began to work a period of reverse barrier nursing would begin and I would be isolated from the outside world, the windows and doors would stay shut for three to four weeks and I would not be allowed to leave the room. I would have to use a commode and would not be able to have a bath or shower. There would be no flowers, all food had to be cooked or peeled: no salads. My visitors would be restricted to the immediate family and they and the staff entering my room would have to don sterile hat, gown, mask and surgical gloves.

This all seemed very daunting, we felt unsure of so much, it felt as though the slightest mistake could lead to infection and maybe even my death.

Gradually we found ways of coping. I had decided I was not going to spend the next six months in night attire but would wear normal clothes. I recalled how we had used a garden spray as a shower when on a flotilla holiday in Turkey several years before. So Iain bought one and we borrowed a baby bath. We soon devised a routine where we covered the floor with a sheet, I stood in the bath and Iain hosed me down with warm water from the spray, rather like an elephant at the zoo!

The commode was pretty ghastly, one of the nurses suggested using baby bottom wipes which certainly made life more sanitary. When the commode was not in use I hid it under a tartan rug from home.

Our friend Maggie found some wonderful fabric flowers: poppies, freesias and daisies which passed the, "sterilisation test" as she called it. Chris brought a helium filled balloon with a get well soon message on it.

The problem of communication was relieved by the purchase of a yuppie phone. This gave me a valuable link with the world beyond the hospital.

We came to terms with the restrictions on visiting with the use of a two-way walkie talkie phone. I had one receiver by my bed and the other was taped to a stool outside my door , next to a large glass screen, this way my visitors and I could see each other and were able to have a conversation in reasonable tones without disturbing the other patients in the ward.

Leukaemia causes a deficiency in platelets, these are the constituents in blood which cause it to clot, consequently I was bleeding from the site of my Hickman Line. I had soaked my nightie and dress and had succumbed to wearing a hospital nightdress. I have a recollection of Dr. Yvonne arriving whilst Iain was cleaning the walls, I was sitting up in bed, giving him instructions no doubt, with a towel clasped to the site of the bleeding. She thought she had walked into a ward at Scutari and scuttled away to give instructions to the nursing staff.

Arrangements had been made for us to talk to George, the husband of Maureen who had been diagnosed sometime before me. Iain found this very helpful. I really felt I couldn't cope with what he was telling us of what lay in store, so I left the men to it! Besides I knew my friend Jenny was due to visit and didn't want to miss her. She brought with her really useful things, hand cream, notelets and stamps. She offered to cook the boys some food for the freezer so they wouldn't go hungry.

We also had a visit from Paul, a friend of our next door neighbour, he had been treated for cancer of the colon. Always cheerful and joking he filled us with hope and encouragement.

My friend Aileen came, having been the recipient of a"post-it" shopping list. She had collected a dress I had ordered, a new towelling robe, a pretty new nightdress and some file paper and a William Morris design ring binder. She too offered her culinary skills for those at home.

We saw Penny, who we knew from church, visiting Phil. She told us of the sermon Christopher had preached on Sunday. He had spoken of Phil and me and of the daughter of another parishioner who that week had undergone surgery for cancer.He told how suffering is ghastly, not least to Jesus, but with him it can be endured differently. Jesus is with us, sustaining us and carrying us. He referred to the poem "Footsteps" which illustrates the same idea. Christopher went on to say that God gave us each other to help us bear our suffering. He referred to the Gospel, in which I'd been able to find little comfort, quoting Jesus' words just before his Passion:

"Remain in my love......

So that my own joy maybe in you and your joy complete."

Jesus will never leave us, Christopher went on. Death for a Christian is not defeat, it can be God's way of healing. Beyond death lies the consolation of the love that can only be glimpsed in this life. Here was my comfort. At All Saints' Church the sermons are recorded and the tapes may be borrowed, we copied this particular one. There was so much there for us to think about and with which we could identify.

In my diary at this time I wrote about my "battle" with Nurse Moira and Dr. Yvonne. They felt my frenetic behaviour indicated that I had not come to terms with my diagnosis, they saw it as a form of denial. I wrote that I was relieved not to have cancer, this to me meant operations and pain. I was reminded of the logo for The Leukaemia Research Fund a simple flower design. The logo for The Cancer Research Fund is a serpent and in my mind represented evil. Yvonne had described leukaemia as an elegant disease, where at the end of treatment the patient is left intact with no parts removed.

My Faith seemed to be carrying me through and lifting me above the trauma that was surrounding me. At this time a card arrived from Keith, our Curate, and his wife Kirsty, in it they had written:

"We are sure that you have the determination

to get the better of this horrible disease."

This really summed up how I was feeling. It was my determination that accounted for my frenetic activities.

Around this time Tom introduced his new girl-friend, Jen. I should think that meeting your boy-friend's mother for the first time, in hospital, must be quite daunting. She coped well and I liked her very much. I remember sending them home with some of my flowers, telling her where to find the vases. Jen and her family were a constant support to Tom throughout my illness. After a few months he moved in to their home.

It was decided that Chris should go to stay with his dad, (my ex-husband) in Herne Bay. We felt that at fourteen he was too young to be spending time on his own and fending for himself at home. He is very fond of his dad and his half-sisters so this was not a problem.

I felt both my boys were in safe hands.

On the Tuesday morning after washing and dressing I fainted. I got up too quickly from the chair, I couldn't reach the nurse-call button. It was such a strange sensation, everything seemed to be happening in slow motion. Nurse Bunty and Nurse Jo, quickly came to my aid, lifting me onto my clean, newly made bed. What a feeling of relief, I felt safe and calm in their professional hands. No matter what might happen I knew that I could trust them.

Later I had an x-ray to check that the Hickman Line was not causing internal bleeding, fortunately all was clear.

Thoughts of death were constantly with us, especially in those early days. I remember Iain leaning over me, so that his shirt was in front of my eyes; I was seized with a feeling of panic, wondering if this was how it would feel being in a coffin. His blue and white striped shirt seemed like the lining of a coffin lid.

Amid my maniacal scribblings I had drawn up some sort of order of service for my funeral. I was adamant that I should be buried in All Saints' Churchyard, almost opposite our home, but was concerned that this might not be possible. I was so worried about this that Iain spoke to Christopher about it, he promised to come and see me.

When he arrived on the ward my line was being dressed, so he went to see Phil. Whilst he was there Phil died. Christopher came and told us what had happened. It was a sad but beautiful moment. The three of us held hands and prayed.

He was able to assure me that there was ample space for me in the churchyard.

The preparations of the ark continued. I spent hours scraping bits of sticky plaster off my locker. Nurse Bunty became quite cross with me saying that I should be resting, but I couldn't rest until my preparations were complete. Nurse Julia understood, she'd acted in the same way before her wedding, earlier that year. She had been married at All Saints' Church.

The next day the bleeding stopped. I could wear my own clothes once again and only needed a small dressing on my line.

That evening Tom smuggled into my room two noticeboards he'd made for me, painted exactly the same colour as the walls of my room. He surreptitiously set to screwing one of them to the wall, Jamie, kept a look-out. It was an amusing incident we were very anxious not to disturb anyone or get found out. I was anxious in case the screws went through to next door. Tom managed to get three screws in before Nurse Julia caught us red-handed! This was sufficient to secure it and Chris was later able to arrange my cards on it.

On the Thursday morning I awoke feeling really scared. I felt I was in a vacuum, I was unsure of what I could and couldn't do in the situation I now found myself. I wrote:

"I woke up with a start, afraid I was dying and had to put up a fight, I was really frightened."

Our friend Maggie arrived bearing all sorts of useful things, she unpacked them all, explaining her reason for bringing each thing. Perfume she didn't like using, a vase that had little value and therefore it didn't matter if it got damaged, various amusing books and what became a very treasured possession, a tape of Taize chants to relax me. Taize is an ecumenical Christian community in France which has evolved a distinctive style of meditative music.

Lindsey Cole (my sister-in-law) came carrying a large, white soft-toy, all securely wrapped in cellophane, this protective wrapper reminded me of my isolation, so he became Coley, the leukaemic bear.

By this time my chemotherapy was well underway. I was having infusions twice a day, this would last for ten days. I also needed regular blood and platelet transfusions as the chemotherapy destroyed my own cells. I found it particularly difficult to cope with the blood transfusions, I felt very panicky at the sight of the bags of blood. My mother had haemorrhaged badly after an operation to remove some teeth when I was very small, I think she had transferred her terror to me.

The infusions of chemotherapy were not nearly as daunting. I looked upon them as a positive step on the road to recovery. The effects were more insidious as the physical changes became apparent. Platelet infusions did not pose a problem at this stage. They were over fairly quickly and in appearance reminded me of honey.

It was about three o'clock in the afternoon, the blood transfusion was still running through the line and I still had to have my evening dose of chemotherapy. I really felt I couldn't take any more, my brain felt as though it was going to explode. I asked Iain to leave me with my Walkman and the Taize tape Maggie had brought that morning. I just wanted to be on my own. I was curled up on the bed in the foetal position, Nurse Jane was quietly attending to my line. I played the tape which was very soothing and I could feel myself gradually relaxing. It was then that I had the idea for this book. Gradually I felt more at peace. I was anxious - I may have upset Iain. The reality was he needed the space as much as I did. I was very excited about my idea and wanted to share it with him.

The blood transfusion continued all night which meant I was constantly under observation by the nursing staff taking my pulse, temperature and blood pressure every hour. It was obviously easier for them to have a light on all night and for several nights after that I asked for the light to be left on, I felt safer that way.

At this time I composed a letter to Virginia Bottomley, then Minister for Health, expressing my concern at the way nursing cover was obviously being cut. I didn't send the letter but in it I described that night to her. How I was propped up in bed cuddling my bear, with my headphones on, listening to my tape and the blood going through my line:

"when the noises on the ward made me feel scared I listened to the tape".

It was a typical night on that ward. A man died, his distressed relatives were with him, there was a confused old man wandering the ward and a new patient was admitted. Clearly I was very frightened at this time.

Olga, my mother-in-law and Pip my step-daughter visited me on Friday. Pip brought lots of bottles full of Body Shop products and we had a fine time sampling all the different smells. Whilst they were with me the wig lady arrived with colour samples and a catalogue of glamorous looking wigs. I was glad to have Pip and Olga there to advise me. I quickly chose the style I'd always wanted my hair to be, straighter and longer than I'd ever been able to wear my own hair. Choosing the colour was more difficult, my hair needed washing and it was also due for another colour tint, we chose a fairly dark colour.

I knew from teaching Clifford that my hair would fall out. I didn't find it as alarming as I had expected. My hair was pretty thick which probably helped and it was indeed several months before it went completely. Initially I'd been afraid that I'd wake up one morning and find myself completely bald but it was a very gradual process. Whenever I combed my hair vast amounts seemed to come out. I wrote in my diary several times: "I've not combed my hair yet!" When I washed my hair the plug hole was always clogged with hair.

Later a Project 2000 Student Nurse, Pat, spoiled me with a bed bath and hair wash. Dr Richard arrived in the middle of all this activity and it was then that I asked him about dying, seeking his reassurance that it wouldn't happen the following week but at worst, would be several weeks away.

On Saturday my friend Avril came with her basket of nail polishes and gave me a pedicure. I felt really pampered after all this beauty treatment.

Iain went to Rochester in the afternoon to watch James play cricket. I really felt he needed a break from the hospital and some normality in his life. I assured him I would be fine without him there.

My brother, Alan, brought me a beautiful large, cotton scarf with flowers printed on it in bright colours. This proved a really useful gift. I later used it to cover the blood bags as they hung on the drip stand and when it was really hot, curled up under it to sleep. This was not the happiest of visits. I'd tried to explain to him how I'd felt whilst all the blood and chemotherapy transfusions had been invading my body but he didn't seem to understand. Dr Yvonne had offered to talk with my family about my illness. Alan felt that his wife should be included,but I was concerned this would be too large a group to meet with the doctor. I don't remember what was said but in my frightened, irrational state became very upset and angry and in the end rang for the nurse to ask him to leave. Poor Iain didn't feel very confident about leaving me again after all this.

It seemed to be a time of being angry with visitors. A neighbour's mother brought in some grapes and my mother's neighbour brought in a vase of flowers. I felt very cross with both of them. The nursing staff were trying to control the number of visitors I had at this time as I was becoming very tired so why did these people keep coming?

In the evening Heike and Richard looked in. Richard was at the time, one of the Team Vicars in Whitstable and Heike had been giving me singing lessons. I had come to know them both through a house group which had been organised by the church. I described to them how I felt. I was making myself a nest of gossamer, surrounded with familiar and treasured possessions in which my days of isolation would be spent. I was feeling so strong and positive, 120% me. I talked to them about feeling like a war lord and feelings akin to wild horses, with these I felt I would be able to fight the leukaemia.

We had arranged with Helen for mum to come and have Communion with me on the Sunday morning. Dad was at his allotment and Iain went to the service in the chapel. It was a lovely peaceful service with just the three of us in my room. I held mum's hand, something I'd not done for such a long time. I remember how soft and comforting it was.

I very quickly fell into a routine which I was able to adopt during my periods in hospital.

The day began around six o'clock when the night staff came in to do my observations, taking my temperature, pulse and blood pressure. The former was particularly important as it could indicate an infection. This would be followed by a very welcome cup of tea and an assortment of tablets to be taken. Norethisterone, a hormone drug was prescribed in order to stop my periods, any vaginal bleeding had to be reported to the nursing staff. One of the side effects of the chemotherapy would be an early menopause. I was also given fluconozole an anti fungal drug.

Next I would cross off the day on my calendar and dust and tidy my room.

Breakfast was usually at about 7.45am and in order to help prevent a sore mouth, which is one of the nasty side effects of chemotherapy, I had to use a mouthwash before and after meals and clean my teeth after every meal, using a soft baby tooth brush so as not to make my gums bleed. I was given lozenges to suck to help prevent the sore mouth One of the "perks" of having chemotherapy was that I could order a cooked breakfast.

My next task was to wash. When Iain was around I could use the garden shower and maybe have my hair washed. If not a bowl of warm water and a strip wash had to suffice. I would then pamper myself, with a liberal application of body lotion and get dressed. As my hair began to fall out I wore head scarves which were colour co-ordinated to match my clothes.

The Senior House Officer would arrive about nine o'clock to take blood from my Hickman Line. My blood had to be tested everyday, as the level of the white cells determined whether or not I needed to be in isolation. Similarly low red cell or platelet counts would mean that I needed a transfusion. Blood gases and minerals also had to be checked regularly and any deficiencies remedied.

At ten my bed would be made and my observations done again. The chemotherapy would then be given through my line.

The coffee trolley came about 10.30am and during the week Denise, the ward clerk from Children's Ward would visit. We had always had our coffee together so it was really good to be able to continue the old routine. I don't think she missed a day all the while I was a patient. She was able to keep me up to date with what was happening on the ward and often brought me paintings and work from the children I knew.

The physiotherapist did her round of the ward after this and was able to suggest some exercises I could do to keep myself in shape. They were not too strenuous and could be done as I lay on my bed. Some of them were very similar to the ones which Avril and I used to practise on Tuesday evenings before I was ill.

Joan, the domestic, came each day to mop my room. She was from the Philippines and as the weeks went by I heard all about her family and her hopes for the future.

Lunch was usually served at 12.30pm. The food was edible, on the whole. There was a wide choice of menu which was organised on a six week rotation.

Observations were done again at two o'clock before the morning staff finished their shift. Then I would rest, sleep or listen to my tapes, quietly until the tea trolley trundled past about three o'clock.

There would usually be some visitors during the afternoon. My parents came two or three times a week. Chris came after school most days. Tom would visit after work.

Helen usually called at the end of her day if she had not been in before.

There were more pills and observations at six o'clock.

Supper was at 6.30pm and then I would look forward to Iain's visit. Some days he ate at home but quite often he would come and have his supper at the hospital. We often used to fall asleep watching the television cuddled up on my bed, only to be woken up by the entry of a nurse with chemotherapy or wanting to do the 10 o'clock observations.

Monday was the day when the Floor Team hit the ward. All the beds are moved and the floor scrubbed and polished. I'd met Bill and Tom on Children's Ward. Bill is one of those gentle, larger than life characters who are always cheerful and smiling. I always enjoyed their cleaning sessions and particularly now when I was trying to get my room ready for my isolation.

Avril left me some shopping I'd requested. A T-shirt and shorts set which I'd seen before being hospitalised. It had a sunflower design. Avril enclosed a note:

"The sunflower seed is planted - just like the Holy Spirit was planted in you Joan.

Like the seed you sprouted and grew - as did your faith. The stem is now straight and strong - with perhaps a stake for support. You know who your stake is and you know you have the best Gardener. Its with his influence and constant care - that you have grown in size to be one of the tallest flowers.

The yellow flower blooms to smile and cheer us. Full of sunshine. You radiate that warmth and glow - showing how you are loved and faithful to Him. Like the

sunflower you turn to the source of all your energy. You know He's providing

all your needs, love from Iain, support, peace and warmth, attention and care from

all those around you. You're aware that you are getting more at this time of need -

but then you are giving back to others far more than perhaps you are aware of -

just like the many seeds scattered from the parent plant.

Joan you are certainly showing to me and others that your faith is your great

support along with Iain, family and friends. Therefore wear the sunflowers and

then some of us will share the secret as to why. Keep the sunflower smile and

also remember that there are times when they turn away their faces. Just as you

have accepted that solitude can be a time of refreshment. We all need time to

reflect and gain inner strength."

After this I adopted the sunflower as my emblem, collecting get well soon cards with sunflower designs. Iain bought a large print of Van Gogh's "Sunflowers". The boys found photographs of themselves and sunflowers they had grown when younger. I have a mug, candle, stamp and several large fabric sunflowers. My mother sent this quotation from Moore's Irish Melodies:

"The sunflower was worshipped by the Peruvian Incas as a symbol of the sun. Their priestesses wore medallions fashioned in its image.

It was introduced to this country in the 16th century and became a popular feature in city gardens because the sunflower is happy in smog, fog and polluted air where more tender blooms would perish.

As the sunflower turns to her god when he sets, the same look which she turned

when he rose."

My first period of "splendid isolation" began on Monday 28th June, ten days after diagnosis. The door and windows were shut. I wrote in my diary, "peace at last". My frenetic preparations were complete and I became calmer at this time, surrounded by familiar and favourite things.

In my 10 by 10 room I felt safe and in control. "I'm in control" became something of a catch-phrase. I think we stole it from gas board advertisements of the time.

Next to the sink I had a table which acted as my desk, with the yuppie phone on it and my writing equipment in a letter rack. Chris brought the calendar from my office, so I was able to cross off each day in colour codes to show when I had chemotherapy, when I was isolated and when in hospital.

Above this was the glass screen through which I could see out to the nurses station and into the ward. Iain used to bring fresh flowers from the garden, wrapped in foil and tape them to the outside of the glass, I had to imagine their scent!

Above this screen we made a collection of "comfortable sayings" which James printed on the computer:

Buncie says: "don't assume the worst"

Dr Yvonne says:"I don't waste N.H.S. resources"

Sue says: "difficulties dig reservoirs into which God pours his love"

Avril says: "may the sunflowers still smile and give you encouragement".

On the wall behind my bed I displayed family photographs, an assortment of pictures I particularly liked of pigs, Beryl Cooks "Ladies Night", several versions of Monet's "Water Lily Pond", a photograph of a Whitstable sunset and various local views.

I had a collection of post-cards from places I thought we could visit when I was fit again, from my aunt in Holsworthy and a friend in Majorca.

On my locker I had get well soon cards from the family.

My silk flowers in my favourite Dartington glass vase, the television and video recorder were on a table facing me.

Above this was the noticeboard which was eventually covered with over one hundred cards. A print entitled "Growth", which my friend Heather had given me for a birthday present and next to this the print of Van Gogh's "Sunflowers".

On the back of the door I made my collection of photographs, cards,adverts and sayings on the sunflower theme.

From the window I had a lovely first floor view of some sycamore trees, through which I had glimpses of the Kent County Cricket Ground. I was able to spy on spectators eating their picnic lunches on the edge of the ground! I could look down into the patio outside the restaurant.

We were very strict about visitors. Iain , the boys and Helen allowed into my room, everyone else had to chat over the walkie-talkie.

I don't remember feeling bored during this time of isolation. I vowed that I wouldn't succumb to watching daytime T.V., something I've always frowned on.

Ten years worth of family photographs had been stored in a shoe box and I set myself the task of sorting them and putting them into albums, quite a time consuming job, but it made me feel closer to home and the family as I did it.

I spent time (and money) browsing through catalogues from Laura Ashley, Nightingales and Traidcraft. I co-ordinated my outfits with headscarves and earrings!

I was having problems with my eyes, they didn't seem to be focusing properly. I found it hard to concentrate on reading. I've never been a great reader of magazines, always preferring a book. One particular Project 2000 nurse reminded me of Milly Molly Mandy. I'd loved reading the books by Joyce Lancaster Brisley as a child and asked for copies of these again. From these I progressed to a trilogy of books written for children, about Canterbury during the war, called "Emma's War" by Violet Brand. I had heard her lecture on dyslexia and a mutual friend had organised three signed copies to be sent to me.

Much of my time was spent resting and sleeping or undergoing the various medical procedures.

Sometimes Iain and I watched T.V. in the evenings. He brought the Three Tenors video and we had a recording of the Archbishop's Enthronement which I enjoyed watching again, spotting several people in the congregation and of course Chris meeting George Carey in the precincts after the ceremony.

Rob, a family friend and we later discovered Dr. Yvonne's next door neighbour,made a video of Iain and the boys at home, showing off the new three piece suite which had been delivered after I'd been admitted to hospital. I'd written a script of things I wanted to see. The larder and freezer, just to make sure they were eating, my favourite view of the trees from the sitting room window, my plants to make sure they were being watered and Iain even bought some flowers!

By the Saturday of the second week, some three days after finishing the first course of chemotherapy, the dreadful side effects were beginning to appear. I had an anal fissure which was extremely sore. I'd been prone to haemorrhoids since having the boys. I was prescribed Lactulose liquid which made the problem a little easier Dr. Yvonne compared chemotherapy with Domestos, as my mouth and rectum became very sore and uncomfortable.

It was an extremely hot day and I had an electric fan in my room in an attempt to keep me cool. But my temperature was up. Dr. Simon gave me a thorough examination looking for sources of infection. Blood was taken to help identify the particular bug which was causing the problem. He prescribed piperacillin and gentamicin, the first of what was to be many courses of antibiotics.

During his examination Simon asked me if my husband was a vicar. I found this highly amusing and was a little puzzled by the question until he explained that he had seen the chaplain and vicar visiting me. This was the first time in my life I had admitted to being a Christian.

By the Monday I needed another blood transfusion. I wrote in my diary that I felt faint and panicky and that I couldn't cope. I rang Iain and asked him to come and be with me. I felt very low and scared, not knowing what was going to happen to me. Would the treatment be successful? Would I die? I was very worried about the battle going on inside me. When Iain left I was very tearful, Nurse Julia came and sat with me. I just wanted to go home to be with him and the boys.

Iain had been allowed two week's compassionate leave. Now it had been agreed that he could alternate working from home with going to his office. He arrived very early at the hospital on Tuesday, his first morning back to work, he wanted to make sure I was coping before he travelled to London. We had a cup of tea and off he went. I had already sent a letter to his office, hoping to encourage him and offer him positive thoughts. I wrote in my diary that it was nice having him, "out from under", we needed to be apart sometimes.

On Wednesday my wig was delivered in a neat, cardboard box. I was apprehensive, opening it. I was reminded of the Jasper Carrott character "Wiggy" as I found it wrapped in a hairnet. There was also a swing ticket warning of the danger of opening the oven door whilst wearing the wig. I found this all very amusing and really couldn't ever imagine wearing the thing. Eventually I tried it on. I felt like a Gypsy, it was really too dark for me. I put it back in its box and left it on the top of my locker

My potassium levels had fallen rather low at this stage and Nurse Julia advised me to eat lots of bananas. Potassium supplements were also prescribed, three more tablets to be taken after meals.

My friend Jane arrived. We've known each other since school days and as she lives in Hampshire don't see each other that regularly. She stayed for over an hour chatting on the walkie-talkie. She brought me some cotton head scarves, some she had made and one she had bought, with tiny sunflowers.

I don't think a day passed without my receiving a card or letter with words of hope and encouragement.

Brenda, a friend from church wrote:

"I want you to know you are held up by a great cushion of prayer."

Maggie wrote:

"On my drive home I found myself rehearsing all the things I didn't say: that you

mean a great deal to us and the thought that we might lose you is very painful and

we cannot pray hard enough for you both. These are the things which would be

risky for someone like me to attempt to say because it would be too difficult, they

wouldn't come out right, even if they did, they might upset you.

Also, of course, there are other things of the kind which it is hard to say for

different reasons- mostly terrible English embarrassment. It is hard to know how

many of these to say now and how many to save for when they could be needed

later. But perhaps it does no harm to say them twice. And what are they?

Well, I think what needs to be said is that there is no depth of awfulness where

God is not with you and, most wonderful of all, the worse it is the more he's there.

I used to think that maybe the experiencing of God in the very deeps was

something which our psyches supplied to comfort us and see us through- that it

was a sort of wish fulfilment, if you like. But what I have felt of God when I have

been very down, has shown me that it is not so. The reason why he is so very close when we need him most is exactly because we do so need him. But it is not that we manufacture these feelings to comfort ourselves: it is rather that the nature of love is to respond to need. And just as a mother, while loving all her children, goes to the one who needs comforting, so God is especially, transparently close to those in need of him, just because of what he is like.

I hope and pray that you will experience him strongly throughout this horrible time I expect you will. It is usually only necessary to be honest with him about your need and open to his comfort to be aware of him. Sometimes we do feel deserted and those are the worst times. But it is only us of course: it isn't true and later we usually know that he was there.

It struck me when I was with you that you were making a lot of effort to be

cheerful. It's very tiring and, I think in the end not to be pursued, because what

matters is that you are you, whether cheerful or not. Let other people put energy

into being cheerful for you: your friends owe it to you as your friends- you've

earned it by being the same for them in their catastrophes- and even if you hadn't

they'd gladly do it anyway for love of you. And the hospital staff are paid to keep

you happy. You just concentrate on being you and getting through whatever it is

that's happening to you in the way you really feel. That will take the least energy

and be the most beneficial to you in the long run. God is where you honestly are,

not where you'd like to be."

Tim, Maggie's husband wrote:

"You never know why things happen to you in a particular way and we can only

guess at the purpose in our lives, but I am sure that purpose there is in all that

happens and that, eventually, we will know why we have experienced what we have."

My antibiotics were changed on the Tuesday. I hadn't responded to the first line of defence so stronger measures were now needed. I was now to have Ceftazidime, which has a very distinctive, cat-like smell and Vancomycin. The latter had rather alarming side-effects as it was administered neat. As soon as the drug went into my line my mouth began to tingle, I heard ringing in my ears and my skin felt as though it had been brushed with nettles. This is called "red man syndrome". Fortunately a doctor was close at hand and quickly prescribed a hydrocortisone infusion which covered the side-effects. It left me feeling weak and feverish for a while afterwards. Subsequent doses of Vancomycin were always diluted in a saline drip!

Having so many transfusions meant my Hickman Line was frequently attached to a bag of blood, platelets or antibiotics. The nurses were very busy and often I had to wait to be disconnected, particularly when they had to put on masks, gowns and gloves before coming into my room. On Friday I wrote:

I would really like to be disconnected from my Hickman Line so I can wash

properly. The blood keeps running back up through the line and looks horrid."

Again an hour later I wrote:

"Talk about frustrating, I've just washed and dressed myself, no mean feat with a

blood filled Hickman Line flopping around like a skipping rope and then un-

hooking the empty bag from the drip stand to get my T-shirt on. I'm worn out!"

Sunday 11th July was a very important day for Tom and Chris. It was the day of the British Grand Prix at Silverstone, a must for these two enthusiasts. They were due to leave very early in the morning, fortunately it was a bright sunny day. We had intended to watch the broadcast on T.V. but I was feeling feverish, achy and despite the cream I had been given, my bottom was very uncomfortable. I wrote:

My lowest day yet- wracked with a painful migraine, the light hurts my eyes and I

feel really miserable."

The boys did bring me back a smart Damon Hill baseball cap to wear as my hair was falling thick and fast.

That evening was particularly dramatic. Nurse Karen had smelt burning and sounded the fire alarm. The fire brigade automatically come to the hospital when this happens. Firemen soon appeared on the ward, trying to find the cause of the problem. A heat seeking device was even used. I had a constant commentary on my walkie-talkie and everyone kept checking to make sure I was alright. What I didn't know at the time was that the entire ward had been evacuated. Elderly patients who had claimed they couldn't walk moved very quickly apparently. I wrote:

"At one point a nurse flung in a mask, gown and gloves and told me to prepare to

evacuate. I became like a squirrel, what could I get into my bed to take with me?

Taize tape, Walkman, mirror, glass, drink, phone......"

It took some time to find the fault in a fluorescent light and the ward quickly returned to normal.

I have always enjoyed looking at and being surrounded by trees and hearing the birds singing. From my window I looked out onto the sycamore trees on the edge of the cricket ground. My diary entry for July 12th says:

It's lovely watching the birds. A dandelion clock and sycamore aeroplane all keep

me company in my isolation."

On Tuesday Sue, who had been our curate at All Saints', came to visit us. She was busy planning her wedding, it was exciting sharing this with her. She left us to meet her fiancee and buy their rings.

By Wednesday the white cells were beginning to appear in the blood. I wrote the next day:

"I woke up feeling excited and confident."

At 5 o'clock Dr. "Maggie burst in and opened the door," crashing into the commode as she did so. "You might be home for the weekend." People could visit without the gowns and masks and gloves and we no longer had to use the walkie-talkie. But I felt strangely vulnerable after being shut away for 18 days and I didn't like the smell of the sluice which wafted in through the now open door.

Next day, Friday, Nurse Bunty showed me how to dress and flush my line. The nurses had been doing this for me, but as I was about to go home for a few days I had to learn to do this myself. My hands were shaking as I tried to do it, it all seemed very technical and complicated and I was terrified I might introduce an infection into the line

A parcel arrived from Sue, my friend from college days. Enclosed was a pair of flamboyant earrings: large gold hoops with fuchsia parrots! They went wonderfully with the outfit I was wearing.

I started packing a few books and took down some of the photographs from the wall, but Bunty insisted that I rest. But I was so excited, I felt as though I was going on my holidays!

Chris came after school and took all the cards off the noticeboard. We laughed as we found the finger tips form the rubber gloves he'd worn when putting the cards up, impaled by drawing pins. He stripped the room of all my lovely possessions and carefully packed them in boxes and cases.

I had managed to accumulate so much that we had to "high-jack" a trolley to take it all to the car. I was given my T.T.O.'s (drugs To Take Out) and instructions to take my temperature three times a day and ring the hospital immediately if it went above 37 degrees. I was to have a blood test at the Path. Lab. and then see Dr.Maeve (another Consultant haematologist at the hospital) on Monday afternoon.

Chapter 3

We stopped off at my parents house on the way through Canterbury and drove through the woods to Whitstable. It was wonderful to see the flowers and gardens as we passed.

It was so good to be home. I sat on the sumptuous new suite and enjoyed my favourite view of the garden and trees once again. The house was spotless and Iain had put flowers in the vases too.

At last after four long weeks I was able to have a soak in the bath with some of Pip's peach bubble bath from the Body Shop. Such luxury. How safe and warm my own bed felt too.

It was marvellous to wake up and be able to have a cuddle with Iain. He bought me a cup of tea and left me reading Milly Molly Mandy while he cooked a full English breakfast. I had been encouraged to eat three protein meals a day to help the bone marrow regenerate after the chemotherapy.

Iain helped me to flush my line, I was still very apprehensive about this procedure and welcomed his support, it was something positive he could do in my treatment. I had great difficulty breaking the glass ampoules of hepsal which we needed to draw up into the syringe but Iain enjoyed playing "doctors".

David, a friend from church, called to see Iain and was thrilled to find me at home. He promised to organise a Home Communion for us.

We went shopping in Tankerton to buy meat for Sunday's lunch. I treated myself to a new pair of sunglasses. It was just a normal family Saturday.

Keith, the curate, came after lunch to give us Communion. We felt very privileged to be the first parishioners to use his new chalice and patten which had been a leaving gift from his previous parish.

Marion called with a cake she had made specially for us.

Iain took the family to Herne Bay and I had the house to myself. I so enjoyed the peace and tranquillity of home, recognising the familiar ticking of the clock and those creaks and noises you only hear when the house is empty.

Although I went to bed early it took a while to fall asleep as I was so busy planning the next day. It was all so exciting. The church clock kept me company once more.

We woke early and lie in bed talking and listening to the singing of the young people who were camping in the vicarage garden opposite our house. Chris rode to the shop to buy croissants for breakfast.

I sat in the garden painting my toe nails whilst Iain gardened.

I began to prepare the lunch, but it was all too normal for everyone and I was very tired and cross with them all as they watched T.V. and left me to do the cooking. Eventually Iain sent me to bed for a rest and took over in the kitchen. What a delicious lunch it was too- the traditional roast beef, potatoes, Yorkshire puddings and home grown spinach!

On Monday morning I enjoyed doing those mundane chores we take for granted: pegging out the washing, ironing- just my usual Monday morning jobs.

After lunch and a rest we went to the Path. Lab. for my blood test. I was pretty indignant when I realised the phlebotamist could not use my Hickman Line and had to use a syringe instead. We saw Dr. Maeve who told us the blood test was normal, but I was to have a bone marrow biopsy the next morning and should return to the ward on Wednesday ready for course two of my treatment.

I went to the Mountbatten Centre, the oncology ward, to have my dressing checked and the line flushed. I had been there when the Duchess of Kent opened it in 1989 but never dreamt I would return as a patient.

On our way home we decided to surprise my parents. It was the time of day when they could be found watching the world go by, on their special seat, in the Cathedral Precincts. We chatted for a while and then went into the town for tea and did a little window shopping.

We had to be up early next morning in order to keep our appointment with Dr. Maeve. I felt as though I was going to work as we sat jammed in traffic of the Canterbury rush hour.

Remembering how painful the first biopsy had been made me very anxious and I was pleased to have Iain with me. I was given lots of local anaesthetic but it still hurt each time Dr. Maeve "found the spot". We had a long talk about remission and the plans for the next course of chemotherapy. I was weighed and measured in order to work out the doses I would need.

We drove into Canterbury and had coffee in Liberties and did some shopping. But I was in need of a rest by this time and found Marks and Spencer quite overwhelming.

Dr. Maeve rang late in the afternoon with the good news that she could see no leukaemic cells in the bone marrow samples she had taken. What a relief: I was now in remission, the first course of treatment had been successful and course two would consolidate this. We cried. Somehow it didn't seem real, was all this really happening to me?

That night we went out for supper and had a walk along the sea front watching one of those wonderful Whitstable sunsets.

During those few days at home I wrote this article for the church magazine- "Unity":

" June 18th was certainly an important day in my life - apart from being diagnosed as having leukaemia, it was the day I admitted to being a Christian. Prior to that I would confess to being a church-goer but had never actually admitted to being a Christian.

I asked to see the hospital chaplain almost immediately after the diagnosis had been made. Fortunately I had met her several times during the course of my work on Children's Ward. She has been a great support to us. On that first evening the quote she left us with was from Exodus 14. 14:

"The Lord will fight for you: all you need is to be still".

Your prayers, thoughts, letters and cards have been a great source of comfort to us. My faith seems to lift me onto a spiritual level which carries me through my illness. Most of the time I am happy and serene. So much so that I had problems convincing the staff that I had come to terms with the seriousness of my illness.

I am not in pain and I have a wonderful thing called a Hickman Line which goes into my chest; through this my chemotherapy, antibiotics and transfusions are administered and blood can be taken via this.

The events that have taken place since 18th June leave me in no doubt of the existence of God, I am constantly reminded of Jesus' loving care, time and again He has been there just at the right time, or He has sent someone in his stead; a card or a letter arrives saying just the right thing, when I need it most.

As I write this I have just returned to Treble Ward for my second course of chemotherapy. I was allowed home for the weekend - four weeks exactly after being admitted. It was wonderful to be back with the family, to see the flowers we'd planted. We had a wonderful moment early on Sunday morning when we heard the young people at the "Happening", singing in the vicarage garden - how I miss singing hymns!

The consultants are pleased with my progress - the latest news is that after the first treatment of chemotherapy most of the leukaemia cells have been destroyed, three further courses are planned.

Please keep praying, this is only the first battle in my fight against leukaemia. We have a long way to go yet.

My love to you all.

God Bless"

Wednesday 21st July, another early start, packing my bags for another stay in hospital. We had a slight altercation over the volume of baggage I was taking.

When we arrived at the hospital we had problems parking the car, but eventually made it to the Path. Lab. for yet another blood test. From there I had to go to have an E.C.G. to check that my heart had not suffered with the chemotherapy I'd already had; this was to become part of the routine whenever I was admitted for treatment.

We reached the ward at 11.30 but my bed was not ready, so we decided to drive to Wye for lunch and a walk round the shops. Then we stopped in the car park at the top of the Downs and I slept for a while.

A bed was ready for me on the main ward. I packed what I could into my bedside locker and Iain took the rest home!

Dr. Richard gave me a thorough examination and seemed quite satisfied that I was in reasonable shape.

It was strange being with the other patients, but good to have people to chat with and think about. It somehow put my own situation into perspective.

The grand-daughter of my next door neighbour had recently had her appendix removed and must have been one of my last pupils on Children's Ward.

Louise, in the bed opposite, had several problems, but I never heard her complain. It was lovely to meet her family, particularly her new grand-daughter. It was very humbling to be able to help her, be it with ordering her food, cutting up her bacon or reading letters to her.

At 8pm. Dr. Sarah came to give me my chemotherapy. By this time I was taking an interest in the particular drugs I was being given, this one looked rather like blackcurrant cordial hanging from the drip stand, it was called daunorubicin. I was also given a tablet to stop me being sick.

I had sent the yuppie phone home with Iain. We didn't think it would be fair on my fellow patients to be using it on the ward. But I missed not being able to contact him.

I quickly adapted to the now familiar hospital routine and my friends and colleagues from Children's Ward were still loyal visitors.

I had decided to try my hand at knitting. I had a pattern and some wool to make baby bootees for Alison, who had lent us the baby bath to use with my showers. Not too many stitches, I thought and only fourteen rows of pattern. I lost count of the number of times I almost completed the pattern but then made a mistake and had to unpick it all!

Dr. Maeve did her rounds late on Thursday. She told me again that I would have a total of four courses of treatment if I could tolerate them. By that she meant if I didn't develop any major infection and that my bone marrow regenerated after each course. I was also to have a lumbar puncture and an injection of methotrexate, another anti-cancer drug into the spinal column. This had something to do with my high white count on presentation. I would have a total of seven of these lumbar punctures and injections during subsequent treatments. She was very reassuring about my progress:

"We take you into sister's office and give you a cup of tea if it's bad news."

Doreen visited on Friday. She had been a mature student with me at college and we had kept in touch; she is Tom's Godmother. When I first met her I thought her quite outrageous, wearing false eyelashes and a leopard skin coat but she looked after us younger students and we often went to her house for meals and to meet the family. She came to the ward carrying a bag of varying coloured wigs, knitted hats and even some false eyelashes and glue which she made me try on. The other patients were all trying to ignore us but eventually they all joined in the antics and laughter, what a tonic she was to us all!

That afternoon June was transferred from the Mountbatten Centre to the ward. She had been diagnosed and successfully treated for cancer several years before and had now relapsed. She was not allowed to eat and had to be fed liquid nutrients and had some sort of drain from her stomach. It all looked rather off putting but we soon got chatting and became firm friends. I hadn't realised until talking to June, that all my body hair would fall out as a result of the chemotherapy I was having. No more leg shaving was a definite plus but I wasn't sure how I would cope with the loss of my pubic hair.

She encouraged me with my knitting. I remember that each day after lunch we would have a rest and go off on some imaginary journey, to join the crowds of tourists at Buckingham Palace, to revisit a sandy French beach where Iain and I had holidayed two years before, we thought we would try Le Shuttle or go into the countryside somewhere for a walk.

The toll of all this seemed to be telling on Iain. I wrote in my diary,

"it's hard to keep buoying you up all the time-especially when I'm tired."

I was having chemotherapy twice a day at this time and feeling very tired and sleeping a good deal. We both missed having the privacy of a single room and the freedom to express ourselves.

On Saturday afternoon there was a large Millett gathering around my bed. Karl, Iain's brother-in-law was home from Kuwait, we hadn't seen him for several months. He visited with his wife Verity, their son, Simon and daughter, Kirsten and Iain's mum came too. They all sat round my bed but seemed very tense and uncomfortable with the situation. It was not quite the home coming I had looked forward to with Karl.

That night was an eventful one. A young lad (one of my former pupils) reacted badly to his medication and was very confused and disturbed. I think we all woke up and whilst the nurses were busy with him a group of drunken, Saturday night revellers passed along the corridor. To cap all this another patient was spectacularly sick!

I wanted to go home, I was feeling vulnerable and scared, I wanted to cry. June's situation was making me anxious about secondary cancers in leukaemia. Dr. Yvonne soon reassured me that these did not happen.

The next day being Sunday gave us the opportunity to go to chapel, the first of many visits there. I so enjoyed being able to kneel at the altar for Communion after so many bedside Communions. The chapel altar is made of wood with a beautiful carved Canterbury cross on the front. Helen was wonderful and whispered, would it be alright for me to have the wine from the chalice. The last hymn was a long one and I was daunted at the thought of singing all the verses, but there was a very meaningful line with which I could identify:

"So shall each fear, each fret, each care, be turned into song."

Maureen, a fellow leukaemia victim, came to visit in the afternoon. Although Iain had already met her it was my first meeting. She had finished her treatment several months before and I was encouraged to see her looking so well and that she had hair again. She had recently returned to work.

Cath, another patient in the ward, belonged to the Salvation Army, as we chatted I discovered that she knew Violet Brand's sister. Later that evening her two sisters arrived in their uniforms, they came to speak with me and were very encouraging and supportive.

On Monday morning I noticed some small lumps in my armpits. Dr. Yvonne assured me that they were blocked hair follicles and sure enough they quickly disappeared. She explained again about the lumbar puncture I was to have in the afternoon. Because I had leukaemic deposits, like the ones in my gum and my breast, elsewhere in my body, they had to be sure there were none in the brain and since the usual intravenous chemotherapy does not cross into the spinal column, cytotoxic drugs have to be introduced directly to the column. The good news was that I could go home for a long weekend if my temperature stayed normal.

Drs. Maeve and Richard arrived at the appointed hour. Iain had undergone this procedure several years earlier and had found it a very unpleasant experience, so I was not looking forward to it at all. As the curtains were pulled around my bed all those awful memories of my diagnosis only a few weeks earlier, came flooding back. I was so tense that I nearly jumped off the bed when Richard put the pencil mark on my back. I had to curl up on the edge of the bed. They were very generous with the local anaesthetic after which I only had a tingling sensation in my leg as the drug was introduced. The worst part was lying flat for 12 hours after the procedure in order to avoid a severe headache.

Chris came in after school , bearing strawberries which we quickly demolished. Eating supper whilst lying flat was not so easy, but I managed. Using a bed pan in that position was very awkward too.

We were very amused to read a newspaper headline across the ward, it was the sports page and referred to Damon Hill's downfall at the German Grand Prix the day before,

"Punctured dream"

I was feeling pretty punctured at the time!

I had the first of many conversations with Project 2000 Nurse Diane. She was older than the other students and reminded me of our family friend Daf, they both have restless spirits. Diane wanted to nurse in Vietnam, I teased her, calling her Nurse Hoolihan after the character in M.A.S.H. I'm sure she probably spent too much time chatting with patients but I enjoyed having her on duty. Apparently I was the first patient she spoke to when she came to the ward, as she found that quite a nerve wracking experience she was very relieved to find me.

When I woke up the next morning I sat up very slowly and carefully and had a slight head ache.

Dr. Yvonne suggested that Alan, my brother, should be tissue typed to see if he might be a suitable donor for a bone marrow transplant. It was all very tentative, I was at the upper end of the age bracket for this type of treatment. It would have to be done in London after I had finished the four courses of chemotherapy and I would need to be in good shape in order to cope with the treatment, but it was all worth a try. I wasn't too sure how I felt about having someone else's bone marrow put into my body. I didn't realise then that receiving bone marrow is even easier than having a blood transfusion.

Late that afternoon I was moved back into the side ward. Louise had become very poorly and disorientated, she had also developed an infection and staff nurse Clare was anxious that I should not become infected too. I slept like the proverbial log that night- back in my old room.

I was allowed home on Thursday morning. June had recommended the hairdressing department of one of the Canterbury stores for wigs, so I insisted on calling there on our way home, armed with a combful of my hair to ensure a better colour match than I had with the wig the hospital had ordered for me.

I found the traffic, noise and shoppers quite overwhelming. We parked at the top of the multi-storey car park. The wig expert was at lunch so we went to the restaurant. It was all a bit of a nightmare for me; full of people, I wasn't quite sure if I could eat salad or not, I didn't know what to choose from the menu, I felt people were looking at me in my headscarf. I felt sick and needed the loo,

"I felt the worst I've felt in all this,"

I wrote in my diary.

The hairdresser was very helpful and we quickly chose a short style and matched the colour to my combings. It would be ready the next day. We hurried back to the car amid the,

"noise traffic, car alarms, car radios and fumes."

I went straight to bed and slept when we got home. I woke up feeling calm and peaceful in my own lovely warm bed once more.

Maggie rang for a shopping list and Jenny came to weed the garden and plant some vegetables for winter. I wondered at that time, how many of our friends would be able to stay the course of this illness.

I spoke to mum on the phone and she told me that Alan's friend Barbara had just died of cancer. It seemed that his being tissue typed just now was pretty good timing. I knew he was feeling squeamish about it and hoped he would see this as something positive he could do.

Next day we went shopping in Whitstsable, meeting several friends and the dentist, she was very pleased to see me.

I visited my hairdresser with my new wig. She shampooed and blow dried what little hair I had, but the wig really didn't need much attention. I was shown how to tease it into shape using a hair pin. I really didn't want to wear it, I was much more comfortable in my head scarves and still had quite a lot of fringe to show.

Carole came for coffee on the Sunday morning and I bravely wore my wig. She has her hair short and studying her hair as we talked, I realised that the tops of my ears should not be pinned down under the wig, so made some discreet adjustments.

We had been invited to supper with Tim and Maggie. I felt more confident about wearing my wig and even drove the car to their house. This all made me feel much better about myself- a taste of normality again. Their house overlooks the sea and we enjoyed our coffee watching the sunset over Sheppey.

We had to be at the Path. Lab. early on Monday morning for blood tests. Alan was to have his blood taken too. It then had to be taken by motor cycle courier to London for the tissue typing to be carried out. He had arrived before us.

My bed was ready in the other side room on the ward. I had packed a pig picture, one of Monet's water-lily paintings, Van Gogh's Sunflower poster and some photographs of the family with which to decorate the walls. I had kept the original get well cards from the boys, my parents and Iain and Blue Tac'd these to my locker.

Dr. Richard gave me the usual "once over" and I took myself off to the Outpatient Department for an E.C.G. I called to see the wig lady at the same time and arranged to change the original dark wig for one the same colour as the one we had bought.

Dr. Yvonne made her rounds, promising me blood and platelets the next day. Once again the chemotherapy was having its effect on my blood and I was needing transfusions again. Yvonne asked how Iain was coping, I was able to tell her of his worries after talking to our neighbours, about their friend who had died of leukaemia. She was familiar with the case and was able to reassure us that it had been a different strain of the disease.

Iain felt much easier again and set to hanging the second noticeboard for my cards. Nurse Diane was highly amused by our activity, asking if it was Whitstable's sea air that made us so silly!

Dr. Richard called in and told us about the patient to be admitted in the next room. Derek, a young man on holiday from Poland and newly diagnosed with leukaemia.

Next morning I went to see Derek to show him my Hickman Line and he asked about the bone marrow biopsy he was soon to have. I was introduced to his wife and young daughter. What an awful situation for them to be in. It really made me realise how lucky I was to be surrounded by the love and support of so many friends and my family.

Sue, my college friend, was able to visit me as her husband, David, was working in the area. It felt so good to be able to chat person to person. She had written and phoned several times since I had been ill, but this was much better. They were staying in Canterbury so she was going to see my parents and would be able to come the next day, which was pretty important as it was my birthday!

"Wednesday 4th August

It felt very lonely waking up on my own on my birthday.

"Don't start feeling sorry for yourself." I wrote in my diary.

I opened Iain's card carefully, as I'd been instructed. Inside was a small certificate of donation from the National Blood Transfusion Service. One of their waggons had been outside Guy's hospital, next to his office, the previous day and how could he have just walked passed? There was a card signed by all the nurses on the ward. Denise came with a beautiful dried flower arrangement representing a country cottage window box, complete with lace curtains, this was from her and my colleagues on Children's Ward. Iain didn't go to London that day and arrived early. He had asked Karl to bring back a gold bangle from Kuwait for my present. Avril brought me a water colour painting of a lady sitting by a bridge over a stream. Chris gave me a pair of blue and silver dangley earrings. James and Richard (my step sons) found a very appropriate piggy poster with the words, "my room, my mess my business" on it. I put it on the wall opposite the commode! Mum and dad brought a birthday cake. There were visits from Olga, Aileen, colleagues and Sue and Dave called again. Tom and Jen came after they had finished work, bringing with them a magnificent basket of Body Shop "goodies".

In the evening Iain used the micro-wave in the ward kitchen to rustle up a celebration supper, complete with wine and after dinner mints, a present from Olga. It really was a very good birthday and we always remember Dr. Yvonne's words to us,

"this birthday is all about having other birthdays".

Next day as had been expected my white count dropped and so my second period of isolation began. The door and windows were shut. Outside my room Iain taped the walkie-talkie phone to a stool and a trolley was laid up with gowns, masks, hats and gloves to be worn by those entering my room. I handed out my flowers, but could see them on the desk outside the glass partition.

Although I had my noticeboard, I wanted to keep that for get well soon cards so decided to Blue Tac the birthday cards to the back of the door I unwrapped the Body Shop basket, despite earlier resolutions to save it and used some of the bubble bath for my morning wash.

Lindsey visited after lunch, bearing three large fabric sunflowers, which brightened my room enormously. News of my symbol, the sunflower had travelled. Tim and Maggie also called. They gave me a Turkish glass candle holder and candle, they had remembered how I hadn't liked the light being turned out in the early days of my illness. We also discussed reading the Bible. Maggie recalled how she had been advised to use the Alternative Service Book. Where there are three readings for every Sunday, covering a two year period. Read over a year this gives six readings for each week. This seemed a good way to start and Iain had given me a copy of the A.S.B. when I first went into hospital. Christopher compared this to travelling around London entirely on the Underground, but admitted that there are times when that is quite useful!

Louise died at lunchtime. One of the hardest things about my illness has been the number of people we have met and come to know who have died. We have felt privileged to have known them and to have been able to share so much with them.

My ankles began to swell, apparently as a side effect of the hydrocortisone I was being given this to counteract any reaction to the blood and platelet transfusions. I was told to keep my feet up and threatened with surgical stockings.

Iain brought me my clean washing from home. I really appreciated the wonderful smell of clean clothes which have been dried in the fresh air, its a shame that smell can't be bottled.

We had cancelled our holiday in the Lake District, which should have begun that weekend. It all seemed a long way from the reality of my situation and Treble Ward. We had that holiday two years later. Someone told me the Lake District was like the gateway to heaven, a very apt description. I was often able to see the vapour trails of aircraft high in the blue sky as I lay in my bed, I often wondered where they were headed, but never wished myself there, feeling quite safe in my cocoon of isolation.

Helen was on holiday at this time and we met Maurice, her assistant, a quiet, gentle character. Iain related to him immediately. His eldest son had been a contemporary of Tom's at secondary school so I knew a little of him. Over the months of my illness we came to know him and his wife, Pennie; an M.S. sufferer. She too has written a book about her life and illness and has been very encouraging of my efforts.

I remember Maurice bringing us Communion. He always used to skip the Confession, saying it would be like a child coming home from school and being made to own up to any naughtiness. I remember too that his chalice and patten were carried in a child's red plastic lunch box and made of hand thrown pottery. When I admired these Maurice told me he had bought them at a Brownie's jumble sale!

Much of my diary seems to dwell on what I had to eat. My appetite obviously did not suffer as a result of the second blast of chemotherapy. There are constant references to gifts of chocolates, cakes and biscuits and at one point I mention that my skirt was feeling tight. Dr. Yvonne had advised me to eat fresh pineapple to help prevent the inevitable soreness of the mouth. It was very refreshing too, particularly when chemotherapy leaves an unpleasant metallic taste in the mouth.

I was still having a problem with vaginal bleeding, despite taking Norethisterone, which should have stopped my periods. Dr. Yvonne joked about the correlation between low I.Q. levels and difficulties with stopping such bleeding. Arrangements were made for me to be seen by a gynaecologist and Dr. Chris came to see me later that day. We discussed removing my I.U.D. as she felt this could be causing the bleeding. Dr. Richard had already expressed his concerns that such a device could cause infection, which was to be avoided at all costs. Since the chemotherapy would precipitate an early menopause and make me infertile it seemed that I wouldn't need it anyway. Iain and I had already discussed all this and it's removal seemed a good idea. I was very impressed with Dr. Chris' technique and my I.U.D. was removed quickly and painlessly and sent to the path. lab. to be cultured.

On August 10th Dr. Yvonne came and opened my door, after only six days of isolation. I had sufficient neutrophils in my blood to fight off any infections. She promised I would be home by the weekend, but gave me dire warnings about Iain taking cold showers and using condoms.

Arrangements were made for me to have another lumbar puncture and bone marrow biopsy the following week and I would have to be admitted to hospital again on August 23rd. for my third course of treatment which was called M.A.C.E. But for now I was excited at the prospect of another "holiday" at home.

Dr. Richard gave me the O.K. to go at lunch time. I rang Iain but could only get the answer-phone. I spent a very frustrating couple of hours before I could raise him, but still could not leave the hospital as my drugs hadn't arrived from the pharmacy. We waited and waited and went for a cup of tea in the shop and waited some more. The wig lady delivered my new wig and we chatted to her, discovering that she lived near Olga and that she too had been a victim of cancer. I was getting agitated, after all it was a sunny August afternoon and I didn't want to be in hospital any longer than I needed. In the end Nurse Julia sent us home and promised to take my drugs to her house at the end of her shift and Iain would collect them from her.

Chapter 4

I finally made it home about 5 o'clock. Enjoying once again the drive through the woods and fine views of the sea and my freedom. Home welcomed me again.

After supper Iain went to collect my tablets from Julia. I had some additional antibiotic as the I.U.D. had been infected.

I enjoyed being home once more, able to relax in the garden and do those mundane chores we so easily take for granted. I was managing to do some dusting, peg out the washing and do the ironing but Kim, our cleaner, was coming to do the vacuuming. I even managed to drive myself to Sainsbury's and do some shopping, it all felt marvellously normal.

Iain came home from work. Ginny, his boss' secretary had sent me a tiny blue medallion which had been blessed at Lourdes, she thought I might like it. It was amazing how many people were thinking of me and offering prayers. It was very comforting to be thought of in this way.

On the Saturday we took a bottle of wine and some food for a picnic at our favourite place in the country, on a hill overlooking hop gardens and orchards. It was wonderful to feel the warmth of the sun again as I fell asleep in the sun.

On Sunday lunch time we went with the boys to the pub, sitting in the garden beside the river, it was very quiet and tranquil. Chris suggested pouring my drink straight into my Hickman line!

I didn't find it an easy thing to do, but I left Iain and the boys in charge of the kitchen and enjoyed having my lunch cooked for me.

Those interminable lists I had sent home during my first course of treatment were still piled on the dresser. I managed to persuade Iain to throw them out. They were an embarrassing reminder of how maniacal I had been at the time.

I found I was getting tired very easily and needed to sleep during the day for at least an hour. It was at these tired times that the morbid thoughts would come.

"Suppose I don't see the boys grow up,"I wrote in my diary. It was a week off our wedding anniversary and I wondered how many more I would celebrate. My tiredness made me irritable, I didn't have the patience to deal with the boys as I had in the past. I was on a very short fuse. I needed to limit the time my visitors stayed, some were a little wearing, but not being overly assertive I found it impossible to admit to my exhaustion and ask them to leave.

On Thursday morning we had to be at the Mountbatten Centre for 10 o'clock. We waited upstairs for a bed to be ready. There were numerous volunteers who plied us with cups of coffee. We were soon called downstairs and Dr. Richard was bleeped to do my bone marrow biopsy, he came straight away. They were certainly becoming less painful. He promised to come back after his Outpatient Clinic to do the lumbar puncture.

I didn't find my first Mountbatten experience an easy one. Having spent three months in and out of Treble Ward, I felt a little reluctant to meet new nurses and face a new environment.

I felt overwhelmed by the sheer volume of people who were coming in as outpatients, having their chemotherapy treatments and going home again. Had all these people really got cancer? I was completely taken aback when a fellow patient asked,

"Where's yours then?" I must have looked puzzled, "Your cancer," she persisted.

I think this was really the first time I admitted to myself that leukaemia was a cancer.

The centre had been designed to eliminate daylight. Apparently it can destroy some of the chemicals in the chemotherapy. I missed being able to look out of windows. It all seemed airless and rather claustrophobic, rather like a modern shopping mall.

Being such a small, specialised unit and comparatively well staffed, everything seemed very efficient. Being new made things very pleasant. There were many homely touches too: Poole pottery crockery, volunteers to make tea and coffee for patients and their visitors and even a drinks cabinet, though I never saw it open!

The showers and loos all seemed to have enormous mirrors on the walls, just to remind me my hair was falling out and I had a Hickman line in my chest and really looked pretty awful!

Dr. Yvonne came in. She had the results of Alan's blood test. She described him as a "good mis-match" so much so that she asked if I was sure he was my brother! I don't recall any particular feelings of disappointment about this, if anything I felt relieved. Yvonne had been very careful not to build up our hopes, she seemed to see it more as a process of eliminating possibilities. The boys were wanting to be tested too in the hope that they might be suitable donors, but it seemed only siblings could be used in my case.

Dr. Richard returned at 4.30 to do the lumbar puncture,

"He's brilliant, no discomfort," I wrote.

The ward looked different as I lay on my back. Supper was pretty hard going, pea and ham soup from a plastic feeding cup.... There was also the problem of the bed pans. Iain left around 8 o'clock and I'd managed to perform then, hoping to go through the night. I slept until the night staff came on duty, then dozed awhile, desperate not to need a bedpan. But finally at 1 am the phone rang disturbing me, almost wetting the bed. I had to give in.

Nurse Liz. called me at 6 am and I got up slowly. I packed my bags and waited for Iain to collect me. We left the hospital as the day staff were coming on duty. Everything seemed confusing, it was all round the wrong way, coming home so early. Iain caught the train for work at 8 am, leaving me to sort myself out.

Saturday 21st August, our second Wedding Anniversary. We had cards from family and friends. I visited my hairdresser with the newest wig. She put it on my head, brushed it and trimmed it as though it were my own hair. I was delighted with the result - just how I had always wanted my own hair to be. I left the salon ,proudly wearing it this time.

We drove home along the sea front and spied John and Avril and went to talk with them. They made very encouraging comments about my hair. Avril had bought Jose Carreras' autobiography as an anniversary present for us.

Christopher brought us house Communion before we went out for a celebratory meal. I felt uncomfortable in the restaurant, my Hickman line dressing was showing, I felt very conscious of my wig and felt people were looking at me.

Monday 23rd. August and back to the Mountbatten Centre for course three of chemotherapy. The centre shuts at weekends, but since this course was to last only five days I was to have a bed there. What I hadn't realised was that the drugs would be running continuously and I would be permanently attached to a pump and drip stand for the entire five days! I had hoped to have lunch with Avril and Carole during the week, clearly that was out of the question. I had obviously become a little blase to be making arrangements like this.

I chose the bed in the corner thinking it would be quieter there, but later regretted this as I felt rather isolated away from all the activity.

Dr. Yvonne came to take more bone marrow, this time from the sternum. It is a bad enough process, but at least when the biopsy is taken from the pelvis you can't see what's going on. This method was awful, I felt as though I was being attacked by a wood pecker.

I woke the next morning feeling nauseous and was promptly sick. I was quickly given an anti emetic tablet, costing £8. I wondered again what all this was costing the N.H.S. Being an accountant, Iain had several times discussed this with Yvonne but it had all gone over my head. These drugs are comparatively new. When the centre first opened a nurse was employed specifically to empty vomit bowls. I'm sure I could not have coped with the illness under those circumstances.

When Helen visited me I told her of my fears about not seeing the boys grow up. She listened, she saw these as realistic thoughts, encouraging me by saying that I should cosset myself and not become too tired. Paul had told me how he saw life as a bonus once he was in remission from his cancer of the colon. My reaction was more angry. I saw life as my God given right!

I heard at this time that Derek had not responded to treatment and he was to be transferred to the Royal Marsden Hospital. He had three brothers and sisters and it was hoped that one of these might be a suitable donor for a bone marrow transplant. Madeline had returned to Poland with her grandparents. Our noticeboard had been put to good use once again as he was able to display her paintings there.

When Iain visited that evening we took the drip stand for a walk, sitting in the sunshine outside the Accident and Emergency Department. I was missing the daylight and fresh air desperately.

I was still having some vaginal bleeding. Dr. Chris consulted her boss and it was decided I should stop taking the Norethisterone as when taken over a longish period of time this can cause bleeding. I also had a smear test.

On Thursday I was transferred back to Treble Ward. My chemotherapy was running very slowly and it didn't seem very likely that it would be finished in five days. Everyone was very welcoming, June was still there having had yet another operation. I wrote,

"It was wonderful to see the sky and daylight and feel the fresh air."

I could see the trees again, the leaves were already beginning to change colour, heralding the arrival of autumn. I felt strangely at home here!

Lumbar puncture number three was due. I had stopped worrying about this procedure now. Tom arrived at supper time. He always had me laughing when he visited and he teased me unmercifully as I tried to eat my supper lying flat on my back. As I was in my own room using the bed pan was not quite such a problem.

The next day I had a card from Buckingham Palace. In April the Duchess of York had opened Three Bears House, part of Children's Ward. I had been introduced to her. Doris, mum's neighbour, had written to her explaining my present situation. Sarah sent her best wishes and a photograph of the princesses, Beatrice and Eugenie. What a lovely surprise.

The chemotherapy was becoming more and more delayed. Dr. Simon had a long conversation with the pharmacist about speeding up the flow, but it was becoming more and more apparent that it would not be finished in time for me to go home on Saturday.

By Saturday morning I was thoroughly fed up. Iain came and washed what remained of my hair. After lunch he settled me down for a sleep and went to see his children. I remember how warm and sunny it was as I dozed on my bed. Nurse Jo did my afternoon observations and horror of horrors, I had a temperature of 38. The doctor was summoned, I was examined, blood samples were taken. Did I have an infection in the line? Had my white count already dropped? It looked as though I might not get home before the next period of isolation began. I slept again. I was feeling,

"fed up and miserable and nauseous," my parents came to see me, but, "I really

couldn't be bothered with visitors."

The chemotherapy finally finished at 4am and at long last I was detached from the drip and I insisted that the drip stand be wheeled away immediately. Next morning my temperature was down. I was free of the drip and was able to walk up and down the ward un-encumbered. I went to chat with June. I packed quickly, desperate to escape and get home. We decided to go to Communion in the chapel. But we were an hour early. Helen was there and did us a special service on our own. The collect for the day was so appropriate:

"Give us grace to endure the sufferings of this present time."

We raced home and had coffee in the garden. I sorted some fabrics, intending to do some patchwork during my isolation. Tim and Maggie invited us for supper once more.

Monday was the August Bank Holiday and the Milletts assembled for a family tea. I felt uneasy wearing my wig, but everyone else seemed to cope with it. It was so long since I had been to mum-in-laws and it felt good to be back with them all - even the dogs! We went to supper at a local pub, but I felt hot and uncomfortable in my wig so we didn't stay very long.

I knew I had to go back to hospital next day. I was upset and tearful. It seemed to get harder each time.

Iain took me to the hospital early next morning before catching the train to work. The side room was not ready so I was offered a bed on the main ward, opposite June. We chatted a while, she seemed cheerful, as always, I never heard her complain.

I decided to go to see Avril since she lives very close to the hospital. I left her phone number with Nurse Moira who promised to phone me if I was needed for anything. I had this feeling of needing to make the most of my freedom before the door was shut once again. Having coffee with Avril compensated a little for the lunch I'd missed the previous week.

Nurse Moira rang to say that Dr. Sarah was waiting to do my blood tests, so I reluctantly hurried back to the ward. By this time my room was ready. Helen called to see me and cheered me , assuring me it was quite a normal reaction , not wanting to come back to hospital. Quite an obvious comment I realise now, but at least I was able to acknowledge it.

Next morning the commode was wheeled in and the door shut; my third period of isolation began. I was delighted by a present from my teaching colleagues at the centre where I was based for administrative purposes. They sent a flowered cross stitch kit, as I couldn't have the real thing. I attempted to start sewing but found my eyes would not focus on something so intricate.

I noted in my diary that I was feeling, "very weary and shivery" and slept most of the next day. I still felt, "light headed" the following morning and my mouth was getting sore again. I wrote,

"it's hell to eat," and my backside was becoming uncomfortable.

Maggie came to see me and brought me a video of all the saints at church, something I had requested. It was a little embarrassing as everyone seemed so self conscious in front of the camera. It was lovely to see them all and receive their get well messages.

Platelet transfusions were by now just part of the routine, every three or four days during my isolation. Platelets are the component which makes the blood clot. After any transfusion the Hickman line had to be flushed in order to keep it clear. This too had become part of the routine. The ward was especially busy, with the staff working to their limits. This particular time my platelets had run through, but it was some time before a nurse was free to come and flush the line, time enough for the platelets to have clotted and so blocked the line. Dr. Sarah tried unsuccessfully to free the clot with heparin, fortunately the line had two lumen so my antibiotics could still be given.

Iain had hatched a cold so had to stay outside my room. I missed our cuddles and had to be content with conversations on the walkie-talkie phone.

The mouth and bottom problems were not improving. I wrote,

"Food is painful going in and coming out. I hope it does lots of good in between!"

Helen brought me Communion on Sunday. I was feeling very uncomfortable and weepy. I wanted to be at All Saint's Church for Communion. This was to be Christopher's last Sunday before taking up a new post at Bradford Cathedral. He had been very supportive since I had been diagnosed, we felt very sad at his departure. The familiar words of the service brought memories flooding back and my tears began to flow.

By Monday my line was leaking badly. Dr. Richard came to take blood, nothing came out, he tried the other lumin, still no blood. It was well and truly blocked it seemed.

An hour later I became very shivery and shaky. I shivered so much the bed shook. I was quite frightened, I didn't like being out of control of my body. This was my first rigor. Nurse Vikki put me to bed and I tried to relax, listening to a tape Helen had given me of the Harsnet choir, with which she was singing. I slept for a while. Dr. Richard arrived with a Hickman line repair kit, but had little success.

I slept again after lunch and woke at 4pm feeling cold and shivery. Another bed rattling rigor occurred. Nurse Marika took my temperature, it was 38.

I wrote,

"I really feel quite low, it really feels like an uphill battle this time."

Dr Richard came to put a venflom into my hand as the line could no longer be used. I was desperate for re-assurance. He told me that I had no white cells yet and the rigors were caused by high temperatures which showed that I had an infection. I knew all this.

"Does it mean anything?" I demanded,

"You know it doesn't - it's just going to be a longer job than last time," was the reply.

It had been decided that my blocked and now useless line should be removed. Dr. Richard administered ample quantities of local anaesthetic and with just a little cutting and a lot of pushing and pulling it came out. Nurse Marika had to keep pressing on the wound for several minutes afterwards in order to prevent bruising. Apparently several other lines from the same batch had fractured in the same way. A letter of complaint was to be sent to the manufacturer.

Dr. Maeve came to see that everything was in order. We discussed things, like Iain's cold; she pointed out if he passed it on to me now, with no white cells to fight infection it could easily develop into pneumonia. She was reluctant to replace my line at this stage as it could be another source of infection. Generally she was pleased with my progress.

My temperature seemed to be going up and down over the next few days. I had a fan to keep me cool but I found the constant whirring very aggravating. I slept a good deal of the time. Blood for the daily test had to be taken directly from my arm. Transfusions and antibiotics had to be given via a venflom in the back of my hand or arm, these only lasted three or four days. I was sore and bruised and feeling like a pin cushion.

I had a new neighbour in the next room. Sharon, I had heard about her from the nurses. She had leukaemia too. She had her Hickman line removed just after I had been diagnosed. It seemed she had now relapsed. Her remission can only have lasted for three months. I felt rather removed from her, I hadn't met her and could not really identify with her in any way. Maybe this was some sort of defense mechanism coming into play. Iain was very upset when I told him about her, feeling that this was some sort of indication of what might be in store for me. This must have been a really difficult time for him. Dr. Maeve talked to him at length and I think he felt a little more confident afterwards.

On Saturday evening Iain went to supper with Tim and Maggie. I watched the Last Night of the Proms on television. I really enjoyed the broadcast. The soloist a Welsh mezzo soprano wore an incredible blue gown, during her performance of Rule Britannia, she raised her arm to reveal a red Welsh dragon set into the folds of the sleeves.

Nurse Glenda came to give me my antibiotics. She is a keen amateur operatic performer and I recall her singing with the performers on television. I admitted to her how ill I was feeling. She sympathised, saying it was hardly surprising considering how high my temperature was. It felt as though she was giving me permission to feel ill and sorry for myself. I really had not felt this miserable before.

On Sunday I wrote,

"Black Sunday, the lowest point ever, total annihilation. Iain came and washed and dressed me."

Alan was due to visit but we asked him not to come. Maurice came to give us Communion but I was fast asleep.

By now I was on the strongest possible antibiotic called amphotericin. I had developed an allergic rash and had a permanent headache. Dr. Richard assured me that it makes people feel rough. It all seemed to be a bit of a conspiracy on the doctors part. It felt as though they had found the antibiotic which gave me the worst side effects and then pumped me full of it! The rash itched like crazy. I had my piggy photograph and had collected several get well soon cards with pigs on them. As I lay on my bed I felt like a sow scratching herself.

At this point I really felt it would be easier to die, than to put up the fight I felt I needed to survive this illness. Later I picked up my A.S.B., but really could not concentrate to read anything. The book opened at the now familiar reading in John 15. Somehow I focused on the verse,

"Remain in my love."

I slept badly that night. Nurses were constantly in and out checking my temperature and giving me antibiotics. Those words kept coming back to me like a mantra. Everytime I woke up I thought of those words and so I made it through the night.

The next days were anxious ones. I hardly recorded anything in my diary.

Iain stayed with me on the Monday. It was Denise's birthday. She had been so loyal, visiting me every day I was in hospital. I had wanted to give her a special present and thought for a long time about what it should be. I knew she enjoyed singing and so arranged for Carole, who taught music, to give her a voice lesson and assessment. I just about managed to write the card. It was an historic day too, the Peace Treaty in the Middle East was signed between Rabin and Arafat in the USA.

By Tuesday I had 8 neutrophils, at last my bone marrow was beginning to regenerate.

By Wednesday there were 30. I was beginning to feel a little better. Dr. Yvonne did her rounds,

"I warned you course three would be the worst."

She hadn't or if she had I had promptly forgotten.

I received a letter from Kathy, wife of my R.E. teacher from school. Jane and I had often talked about them, wondering where they might be. During my maniacal demands of course one, I had asked Tim (who works for S.P.C.K.) to photocopy some relevant pages from Crockfords Directory of Clergy. So we had managed to track Rev. Ron and Kathy to Bristol. I passed the address to Jane and she had written to them.

Kathy updated us on their last 25 years. They were now planning their retirement and a return to Canterbury. She wrote words of encouragement and help,

"Our health is more than anything and I think for most of us it isn't until we lose

health that we appreciate all God has given us."

She recalled a service in Canterbury Cathedral and hearing Ian White-Thompson, then Dean, preaching,

"Give your souls time to catch up with your bodies."

Re-reading that letter now, two years on, I realise what a slow process that has been for me. I feel I have only just caught up with myself!

There was also a letter from Clifford. I was greatly encouraged to hear of his continued progress.

Once again I was finding visitors very tiring. The nursing staff noticed how my spirits flagged after some long visits. I was told to ask them to intervene when this happened.

On Friday I wrote,

"I feel re-assured, safe somehow, as though I've been brought back from the brink."

I woke the next morning feeling,

"refreshed and revived."

Dr. Yvonne came in without her gown, mask and gloves. I had sufficient neutrifils for the door to be open again. She was very kind and re-assuring, saying that I now needed to go home to restore and rebuild myself before the final course of treatment She warned me that I would be extremely tired and emotional. She complimented me on the way in which I was coping with the illness and treatment. Iain joined us, putting on his gown, it was a lovely moment being able to tell him it was no longer needed.

I could have the window open again, there was a fresh breeze and I could hear the birds singing again. But I felt vulnerable: I couldn't cope with the door being fully open yet, but there was a small side panel which allowed in just a little of the noise and bustle of the ward outside.

On Sunday we were able to enjoy the one-day cricket match which was happening outside my window. It was being televised so Iain could watch it with the volume turned down and hear it live.

We heard that Derek had returned home to Poland as there was nothing further that could be done to treat his leukaemia. Again we found ourselves asking, why him and not me?

Dr. Yvonne was encouraging me to build up my strength by eating lots of protein foods, taking "Build-up" drinks and wandering round the ward. After 17 days in isolation even a trip to the ward kitchen really felt an adventure. Denise came to visit and took me for a walk to the League of Friends shop to buy some cards. I was feeling terribly weak and a little overawed by everything. We went into Children's Ward and saw all the familiar faces once more.

The message about eating protein soon got about. My parents arrived with some delicious mum-made chicken sandwiches, which I demolished pretty rapidly.

One of the great advantages of being in the Mountbatten Centre was that I could make use of the Support Therapies on offer, aromatherapy, reflexology and relaxation techniques. Iain and I had an appointment with Frances, the relaxation therapist. She asked us about our life-style, but I found I had almost forgotten what that was. She recommended the use of camomile tea and lavender oil to help us sleep. We were shown breathing exercises, similar to the ones Heike had shown me in singing lessons. My use of the Taize tape met with her approval. Frances made us another appointment and I was more than pleased to learn that she would still be able to see me during reverse barrier nursing.

On returning to the ward we were greeted with the news I could go home.

Chapter 5

Home in time for lunch. Iain had renewed the pot-pourri and everything smelt delicious,

"What a thoughtful man I have!"

I had a really good soak in the bath. With no Hickman line to worry about I could be totally immersed. What luxury after those days of isolation and washing in a bowl, much of the time I had felt too weak to use the portable shower.

I wrote this letter to be photocopied and sent to various friends and relatives,

" September 22nd

Just to update you on events - I came home today, it was wonderful - course three now over, 3 down 1 to go!

This course really has been a struggle. The consultant describes it as taking my bone marrow to the brink of extinction, this time everything else, my emotions, Faith, spirit and entire body seemed to go with it.

The chemotherapy lasted for five days and was by "continuous infusion", something I'd not experienced before, I also had to go to a different ward for this, the Mountbatten Centre, a very modern and comfortable unit, but with no natural daylight and everyone there was being treated for cancer in some shape or form. I found it a little depressing there. The staff were all very kind but Treble Ward feels like my second home now.

I went back to Treble and straight into "splendid isolation." I developed an infection in the Hickman line and it started to leak and had to be removed, so I had to have venfloms and conventional blood tests in my arms.

Iain caught a cold and couldn't come into my room for a whole week.

My temperature kept indicating infections, I think they used eight different antibiotics in all, one of which caused an allergic rash. I wasn't in pain, I just felt really, really weak and incredibly feeble.

Gradually things improved, the staff were all wonderfully caring. Iain's been marvellous, visiting at least once a day, going up to the London office as much as possible and keeping things going here (especially the washing!)

I can't tell you how marvellous it is to be home. I am to have lots of rest and protein - next stop Sainsbury's to stock up on wholesome goodies.

I have to go back to hospital for a blood test on Tuesday. Then course four will begin on October 4th or 11th depending how quickly I recover.

Sorry if this letter seems a little cold, but it is the only way I can write to you all and say what has been happening."

I had a visit from Chris, a fellow hospital teacher in Birmingham, now retired. She was living with a friend who was working on the Channel Tunnel project and had a flat in Calais. I had written and told her of my illness and she had decided to channel hop and see me, catching the ferry to Dover, hiring a car to drive to the hospital, only to learn I was at home, where she had driven to find me. What a surprise.

I suddenly realised that her friend's brother had leukaemia and a bone marrow transplant. Sadly he had recently died. She didn't know which strain of the disease he had had and we didn't discuss it very much.

On Thursday evening we drove to Jenny's house, to collect the camomile tea and lavender oil I had asked her to buy. As it was her son's 18th birthday we also delivered some champagne. Iain was a little anxious and over protective during the evening, but for my part it felt wonderfully normal to be drinking with friends and munching high protein nuts. We left with a chicken casserole Jenny had cooked for our supper the next day.

I woke up the next day having forgotten I was ill. It was horrid being jolted back to the reality of the situation.

Marion came bearing our lunch and she drove us to the sea front and I was able to enjoy a brief walk and benefit from the exercise and sea air.

It was autumn again. The seasonal changes still remind me of my vulnerability. I watched the leaves then as they changed colour and fell to the ground. I thought of how they had looked in the spring, the tight buds waiting to shoot into life. Spring, would I see the next one, I wondered?

It was time to put away the summer clothes. I was tempted to put little love notes in the pockets of Iain's shirts, but thought how painful that would be for him if I didn't make it.

I wasn't sleeping too well at this time. My brain was in overdrive, planning what I would do the next day. I used to get up and sort papers, throwing away lots of outdated teaching notes and reports. I'd put the washing on, do the ironing, write letters or read and drink camomile tea.

We had an appointment with Philippa, the reflexologist. I found it very relaxing, but it must have been rather boring for Iain, sitting, watching my feet being massaged. I was pleased to hear that Philippa would be able to give me treatment whilst being reverse barrier nursed too.

We shopped in Canterbury. I treated myself to a new blazer and Iain bought some new shirts.

Mum cooked us lunch. I went for a sleep on their bed. I wondered just how long it had been since I'd slept there. We had, to take home, a mum-made cauliflower cheese, some jam and Iain's favourite pickled onions, all grown by dad at his allotment. But first I had an appointment with Dr. Maeve at the path. lab.

I had another blood test. Arrangements were made for me to have a day trip to the Mountbatten Centre the next day. This was to have a new Hickman line inserted and another lumbar puncture and just for good measure, a further bone marrow biopsy.

The anaesthetist was already waiting for me when I arrived at the centre the next morning. At 10am I was pushed, on my bed, into the treatment room. Some valium and antibiotics were administered via a butterfly line in the back of my hand. I felt rather like a butterfly once the valium took effect and really wasn't very aware of the line going in. I was soon back on the ward. At 1pm I walked to x-ray. They needed to check that the line had not punctured my lung.

Dr. Maggie appeared at 1.30pm for the lumbar puncture. The staff on the Mountbatten Centre were happy that I should stay flat for only four hours as I had not had any adverse effects from the previous ones. So I managed with only one bed pan. By 6pm I was sitting up eating my supper.

At 7pm Dr. Maeve came to do the biopsy. Since I make no further comment about it in my diary I can only assume that by this stage the procedure was a comparatively painfree one.

I packed.

At 8pm Iain arrived to find me ready and anxious to get home. He really couldn't believe his eyes, expecting me to be laid low by the procedures of the day. I did insist on sitting in the back of the car. I could not face the prospect of wearing a seat belt; my chest felt sore and bruised.

What a day trip that had been!

Thursday 30th September was another day to remember. Alan and his wife, Maggie had an interest in a lovely old house in Teynham. They used it as their weekend retreat from London. A beautiful ? century building, with pretty gardens, surrounded by orchards, with fine views out towards the Thames estuary. We heard the devastating news that there had been an extensive fire and only the kitchen and dining room remained.

The following weekend Iain and I went to see what was left of the house. It was eerily quiet and there was a horrible, lingering smoky smell. It felt strangely symbolic, the wreck of a house and me. Would we both rise Phoenix-like again to new lives? What else would befall our family this year we wondered?

Chris' school had their annual sponsored walk through the woods. I was touched that his house had decided to give their proceeds to The Leukaemia Research Fund. It turned out to be a very wet and muddy walk but he managed to raise £56.

On Monday I returned to the Mountbatten Centre for my fourth and last course of treatment. Dr. Richard came to examine me, telling me my bone marrow biopsy was looking good. He wrote me up for my chemotherapy, this time it was a blue.liquid.

I was getting used to being in the centre. I didn't find it as intimidating as it had once been. This time there were mostly women patients and it felt very quiet and peaceful.

I met Christine who had a blood disorder which needed treating with transfusions and drugs. Every two weeks she needed to spend a night in the centre and had been doing so for two years already and would have to do so,

"for the rest of your life?" I asked without thinking.

The blue chemicals made me feel queasy and gave me a headache. I only ate dry biscuits, cheese and fruit that week. As I wasn't having a "continuous infusion" I was able to wander around quite freely, making trips to the League of Friends shop and fruit stall.

On Tuesday I spiked a temperature. The usual blood cultures were taken, I had my throat swabbed, a mid-stream urine specimen was requested and antibiotics prescribed. Dr. Yvonne seemed to think the chemotherapy could account for the rise in temperature and the treatment might have to be stopped if things did not return to normal. This made me anxious, I just wanted to get things over and done with as speedily as possible.

I had my first aromatherapy session with Abi. For a long time I had been attracted to this treatment but had always considered it rather an extravagance. Tom had even given me the cash to have a session for my birthday the previous year, but I'd blown it on a new dress instead. Now it was offered free - a cancer fringe benefit!

It was relaxing and made me feel and smell good. I don't recall which oils were used but it was a lovely experience. Abi is from the Maldives, somewhere Iain has said he'd like to visit. She described beautiful islands set in clear, unpolluted seas.

I returned to the ward to be told that I could stop the antibiotics as my temperature had settled.

I can't recall when autografting was first discussed with us. This is where my bone marrow is harvested and then later returned by means of transfusion. I had by this time read Jose Carreras' autobiography, in which he describes his experience of the procedure. I now wanted to know more of what would be involved. Dr. Yvonne was thrilled to hear me talking in these terms as it showed I was mentally ready for such intervention and my bone marrow seemed to be standing up to all the treatment I was having. Sister Louise showed me the isolation rooms which were used for transplant patients.

Most evenings I managed to read a passage from my A.S.B. Often the passage gave me words of hope or comfort. I read from Paul's letter to the Romans, he writes about suffering,

"suffering produces endurance and endurance produces character and character

produces hope and hope does not disappoint us, because God's love has been poured into our hearts, through the Holy Spirit which has been given to us."

Barbara, a friend from church, sent me a small copy of a Russian Icon, called "Our Lady of Tenderness". I had this on the table at the end of my bed. I often used it to focus on in moments of quietness or when things became difficult.

Helen was still visiting me every day. It was at this time that I started to help in the writing of her sermons. This particular week she was having difficulties and was sharing her thoughts with me. We read the relevant passages from the Bible and after an exchange of ideas she was able to complete her sermon. Most weeks after that, whenever I was in hospital, I was able to help her in this way. A very valuable experience for both of us.

The Mountbatten Centre closes on a Friday evening, as I'd finished my chemotherapy I was going home too. It felt rather like the end of term at school as I waited for Iain to collect me after his day at work. I think I was the last to leave.

James had gone to a party with school friends in Rochester and we had an early night. But had a rude awakening about 12.30am when the door bell rang. Iain went down to answer it, he half recognised the taxi driver from Rochester,

"I've brought James home,"the driver explained, but where was James? He pointed to the dishevelled, inebriate heap at his feet! It took a little while to get back to sleep after that.

I was very impressed with James the next morning. He was up at 7am and went off to school without even being called.

On Monday I had another blood test, but as my white count hadn't dropped as much as had been expected I was sent home again.

Alan and Maggie had given me a tapestry of Millet's "The Gleaners" so we went to buy some wools and a frame. I felt confused, but the staff were very helpful and I left the shop with all I needed to complete it. I soon had the canvas on its frame and had identified all the colours. I studied my embroidery books before making a start.

A new project for the next period of isolation.

My room had been booked on Treble Ward for Wednesday morning. Iain had missed so much time from work that we decided to accept Aileen's offer of help and asked her to take me to the hospital. It was pouring with rain as we left. This was the day for interviews for our new vicar. As we reversed out of the drive John and Sally were walking on the opposite pavement, sheltering under a large umbrella, on their way to inspect the vicarage -soon to be their new home.

Aileen stayed with me for a while, I was able to make us a cup of coffee in the ward kitchen as we waited for my bed to be free. I went to path. lab. for another blood test. I chatted to June, we updated each other on our progress. I went for another session with the relaxation therapist, this time making an imaginary journey, rather like June and I had done. Dr. Yvonne made her rounds, telling me isolation would begin the next day. After supper,

"Iain and Pickfords" arrived and I "made the room home."

I had a letter from Cyril, a retired headteacher with whom I had worked. It seems he and his wife Gwen had been at a Harvest Supper the previous weekend,

"We overheard a snatch of conversation from someone opposite us at the table.

When we enquired we found out it was you being remembered and talked about in a complimentary way together with regret for the long period of treatment you were having to undergo."

He went on to tell me how they were spending their retirement,

"Gwen spends a lot of her time working for The League of Friends and is vice chairman of our group. So if you find anything is needed for patient comfort let her know and she can put it before her committee."

I had met nurse Louise during my last course of treatment. She had worked on Viking Ward at Margate Hospital, where the haematology patients are nursed. She had been extolling the merits of the Ivac thermometers which were in use there. They are more accurate and work more quickly than a conventional one. She was surprised that they were not used at Canterbury.

I saw an opportunity here. Maybe we could take advantage of Gwen's offer of help, to buy some of these for the ward. Louise promised to get me a catalogue, we spoke to Sister Karen and I wrote back to Cyril with all the necessary details. The League of Friends had bought a computer for the children to use in their lessons on the ward so I knew what needed to be done.

When Helen came to see me I was able to discuss with her our reading about the centurion in Luke's gospel. He had a servant who was ill and sent for Jesus to cure him. Before Jesus reached the house, another servant was sent telling Jesus it was not necessary for him to go to the house, he knew if Jesus just gave the word the servant would be healed. Jesus commended the centurion's Faith to his followers. There seemed to be a message here for us. I felt Iain needed to be more confident and be like the centurion. Helen was as reassuring as ever, pointing out that we should never feel guilty about a lack of Faith. She reminded me that we were both approaching my illness from different points of view, we were after all two different people.

My mouth was sore again and my backside went beyond being sore to being positively painful. I couldn't sit comfortably. Opening my bowels was unbearably painful and left me feeling very weak. I used to wait for Iain to come so that he could help me back to bed from the commode. Dr. Maeve examined me and told me I had an anal split. Anusol cream was prescribed but didn't give me very much relief.

My temperature rose, I was shivery and spent much of my time sleeping. The usual infusions of antibiotics, platelets and blood were administered via my line.

Sharon went home after being in hospital for seven weeks.

The reading in the A.S.B. for 9th Sunday before Christmas was all about Nicodemus. He questioned Jesus about entering the kingdom of God. Jesus told him that he needed to be born again in a spiritual sense. It seemed that through my illness

this had happened to me. I was reminded so many times and in so many ways that God loved me and was caring for me.

By October 25th I had 2 neutrophils the bone marrow was beginning to regenerate. Although they came back quickly they increased very slowly. I wondered how long it would take this time. My brain was in overdrive as I planned all the things I would do when I got home. I hoped I might make it for November 1st, All Saints' Day, our church's patronal festival. But more important was Iain's birthday- November 3rd. I had been busy with the yuppie phone, making plans. I arranged with Barbara to bring us Communion. I rang the supermarkets to find out which one had the most appropriate novelty birthday cake.

Frances and Philippa both treated me during my isolation. Frances took me on more imaginary journeys. On one I went home, feeling like Goldilocks exploring the house whilst everyone was away.

I had a note from June, who had gone to the hospice. She wrote suggesting that I went there for one of my after lunch journeys. She was very happy there, sadly she died a few weeks later.

On Friday 29th October the government voted in support of the ordination of women. Helen visited that day, as usual, wearing her mask, gown, hat and gloves. Her bleep sounded. She opened the door ajar, asking a passing nurse,

"Can you take this message, so I don't have to get undressed!"

The call was from a female colleague to say that she couldn't get out of the prison she was visiting!

Tom had bought tickets for he and Chris to go to theT.O.C.A. Shoot Out at Donnington race track that weekend, their hero Nigel Mansell was due to race. I had written a letter to him explaining my situation. It would have been a wonderful thank you to them, for all their support, if they could have met Nigel. We sent copies to the race track and to his homes in Florida and the Isle of Man. We never found out if he received these letters, as he crashed his car and was taken to hospital. So the boys did not get to meet him, but sometime later signed photographs arrived for them.

Dr. Richard came to the end of his rotation with the haematology team at the end of October. He had seen me on a daily basis through all my treatment. We bought him a glass tankard decorated with the Canterbury crest, as a thank you and leaving present, he also had his birthday on November 3rd. He was touched by our gift, remarking that they only had small glasses where he lived. He recalled June 18th and coming, with Yvonne, with the news that would turn my life upside down. I'd been his patient and he'd seen me through so much of the treatment. My door would open again first thing in the morning he promised.

Iain developed a sore throat so didn't come in to see me. Being Sunday he went off to chapel for Communion and then took himself home to bed.

Next morning when he rang he sounded poorly and fed up. I wanted to be there to look after him but could do nothing, still in isolation. The G.P. said he had a virus.

Dr. Maggie was the new S.H.O. She did my daily blood test at 9 o'clock, but didn't open the door. That day passed so slowly waiting for the door to be opened. I became angry and very agitated. I wrote,

"....waiting-the longest day and you (Iain) home ill-it's all getting beyond a joke. 5.10pm and I'm still waiting."

Dr. Yvonne finally appeared in the evening. I only had 80 neutrifils but she was prepared to open the door. Nineteen days was more than enough isolation. She joked that the white cells were going to heal my sore bottom instead of appearing in the blood. She didn't seem unduly concerned about Iain's virus, but I didn't ask about going home.

I rang to tell Iain my good news, he sounded awful. The boys hadn't been near him and he was feeling very neglected. I rang the home number again and asked Tom to take Iain a drink and some supper. I wrote:

"I feel so helpless and frustrated stuck here with you ill at home. I just want to get home and live a normal life again with you."

Maurice visited the next day. In the course of recent conversation I had mentioned how I had made contact with my R.E. teacher. He recognised the name immediately. It seems he and Ron had been at college together, so he'd telephoned and spoken with him.

Wednesday 3rd November- Iain's birthday. Me stuck in hospital, he stuck at home. Happy Birthday! I'd had to cancel arrangements I'd made. Instead Denise had posted his card for me and ordered flowers from the hospital florist, to be delivered to him at home.

Dr. Yvonne did her rounds, my neutrifils had increased to 112. I could go home on Friday if my temperature remained normal.

Nurse Moira came to flush and dress my line. She told me that Maureen was a patient in the Mountbatten Centre. It seemed she had relapsed and no further treatment could be given.

That evening a volunteer from Hospital Radio came in, asking for requests for that evening's broadcast. I asked her enthusiastically to play Happy Birthday for Iain. She assured me he'd be able to hear it at home. Here was my opportunity to make his day special after all! I rang him to tell him to tune his radio in. Wrong wavelength. All I could do was phone him when the request came on air and hold the radio headphones close to the yuppie phone. They didn't have Happy Birthday and played Russ Conway's "Birthday Cake Blues" instead. Very appropriate.

I had spent a great deal of my time on my tapestry, working along the rows, rather like knitting, with a needle attached to each length of coloured wool. Dr. Maeve inspected my work and was horrified when she looked at the back - I'd done it all wrong it seemed. I wasn't going to unpick it now. Denise looked at it too, it seems I should have worked each block of colour in turn. Joy, the lady who brought round the library books and I knew also from swimming was aghast at my method of working, it was such a waste of the expensive wools. Too bad- this would be my rebellion. I'd just carry on. After all no one would see the back when it was framed.

Friday 5th November - release day after four courses of chemotherapy and four periods of reverse barrier nursing. I had asked Tom to collect me but was delighted when Iain arrived at lunchtime. Dr. Yvonne came, there was lots of hugging as we bade our farewells. She made encouraging noises about my progress.

We left a thank you note for the nurses, with a contribution towards their proposed Christmas dinner.

Tom and Jen had taken my radio and walkie-talkie phone home the previous evening when they visited. I now managed to pack my possessions into a case, a box and some carrier bags marked, "patient's property".

Chapter 6

Thee fresh air greeted me as we left the building. It was a beautiful, sunny and golden day. Iain drove slowly through the woods so I could enjoy the trees in their autumn colours.

Tom and James were home already so we had a cup of tea and I went upstairs for a sleep. But my brain was whirring, there seemed so much to do. My things needed unpacking. The fridge had been turned off accidentally and needed cleaning. I wanted a bath, I weighed myself: 8st12lbs, only half a stone lighter than when I had first been diagnosed.

That evening we watched the video Dr. Yvonne had lent us, of Jose Carreras and Agnes Baltsa performing Bizet's Carmen.

Saturday 6th November was dad's 80th birthday. We had arranged to take mum and dad to Wye Downs. He had camped there as a boy scout and liked to go back there. It was a very damp and windy day so we didn't walk far, but they enjoyed the ride out. We had tea and birthday cake with them.

On Sunday we watched the service on I.T.V., from St. Mary Bredin's Church in Canterbury. We spotted John and Avril in the congregation. We enjoyed the sermon. The vicar gave three reasons why he knew he was a Christian. A promise, a sacrifice and a guarantee. God made promises to us and promises are made at a Baptism. God made a sacrifice for us in the death of his son. Every Christian has guarantees. I could identify with these three things. Yes I was a Christian. I found this a very moving service. It was strange to be sharing this with John and Avril through the television.

Iain took me to one of our favourite pubs for lunch. I ate the biggest meal I'd eaten for a long time. As we discussed the events of the last few months he remarked,

"If the leukaemia doesn't get you the haemorrhoids will!"

In the evening we went to the Taize service at church, which Tim and Maggie organise. I'd not been in the church since June and felt a little anxious and self conscious. The church was lit by candles and the congregation was small so it wasn't too overwhelming. The church looked beautiful bathed in candle light, it was like seeing things for the first time after so long an absence. The altar frontal and banners glinted warmly and everyone was so pleased to see us again.

Our new routine gradually evolved. Iain was back at work. I would get up in a very leisurely style, making myself a cup of tea, taking it back to bed and reading for a while.

I was able to cope with the washing. Kim still came to help with the housework but I managed the dusting and tidying. I think we shared the ironing at that stage. James and Iain did the shopping at weekends. I was beginning to cook simple suppers for us to eat in the evening.

I was still needing to sleep for an hour or two during the day. I would read some more late in the afternoon before Iain came home at suppertime.

I began to visit friends again. I took a thank you gift to Denise, some of her favourite perfume. Her youngest son, Paul baked some shortbread specially for me to have with my tea.

Jane was staying with her parents in Canterbury, so I took the opportunity to have coffee with them.

Friends invited me for lunch.

I went out with mum and dad for lunch. To the local college where students practise their skills in cooking and waiting. To a local church where the proceeds from the ploughman's lunches go to church funds.

Iain and I had lunch at the Barn, a local pub, again. Although he and James had been there, my last visit had been on June 9th.

A group of teaching colleagues invited us to a reunion. Since I should have hosted the previous one in the summer and had to cancel because of my illness, it was an extra special occasion.

The group with which I had sung held a charity concert. The proceeds of which went to help a local aid convoy going to Bosnia. It was good to see familiar faces and be able to enjoy their singing again.

We had discussions about whether Chris should come back to live with us. I missed him dreadfully, but really did not feel I could cope with the responsibility involved and he seemed happy and settled with his dad and little sisters. He phoned and visited frequently. I was able to go to his school's parents' evening. The reports were varied, but he was obviously well supported by the staff and his friends. Emma was particularly special to him, she was able to help him as her dad had died of cancer a few years earlier. She became a frequent visitor and they spent a lot of time together.

Tom and Jen announced their engagement the week before Christmas.

I really felt as though I had lost both my lads and my fertility in one fell swoop as a result of my illness and its treatment.

It snowed towards the end of November. We shopped in Dover after visiting Denise, but the sky looked so ominous we didn't stay long. The following morning we awoke to the sound of snow tumbling off the roof. There was that quiet, whiteness reflected into the bedroom that only comes when it has snowed.

Alan and Maggie called in and their seven year old son, Ben was soon busy in the garden, building me a snowman. We all watched the Raymond Briggs "Snowman" on video as he thawed out.

I was able to drive myself to the hospital for blood tests. I had my platelet transfusions in the Mountbatten Centre as and when they were needed. I kept my appointments with Philippa and Abi for my reflexology and aromatherapy.

I had to take my temperature night and morning to check for early signs of infection. This was a nerve wracking time. I was desperate not to have to go back into hospital. When there was a rise I had to ring the hospital. Blood cultures were taken from the Hickman line but I was relieved to find I could be treated in the Mountbatten Centre as an outpatient. Their organisation was such that I arrived at the appointed time, was given the anti-biotic, Ticerplanin through my line and could then leave. This happened once a day for five days at the end of November.

I met up with Sharon again. She was having regular platelet transfusions. We were highly amused to learn that these were delivered in a taxi from the Blood Transfusion Centre at Tooting.

On December 2nd I had another lumbar puncture and injection of methotrexate and a bone marrow biopsy. Dr. Maeve was to look very carefully at this sample and then decide whether or not to go ahead with the bone marrow transplant.

I was aware that Maureen was a patient in one of the side rooms. She was having antibiotic. I wondered how she was but did not have the courage to ask the staff.

Iain and his mum went to the funeral of a family friend. They met the friend's grand-daughter who was a nurse at the Marsden hospital. She spoke very favourably about transplants and our hopes began to soar again.

Iain and I met Maeve and Yvonne on December 13th to discuss the transplant. I think it was an exercise in testing my resolve to undergo the procedure as much as anything. They seemed more concerned with that than my physical state. They proposed to harvest the bone marrow under general anaesthetic on January 10th. One week later I would start a further course of chemotherapy and this would be followed by a longer period of reverse barrier nursing. They promised me the usual side effects from the treatment: sore mouth, sore bottom, infections, fever, antibiotics etc. They advised me to put on a stone in weight as I might not feel like eating during the treatment. What a wonderful thing to be told two weeks before Christmas! We felt elated as we left their office and we walked on air along the corridor. This is what we had been hoping for, it could mean a cure.

The following day I heard a news bulletin on the radio. It seemed doctors had carried out successful trials on cancer patients using "blood transplants". I wrote in my diary,

"Are the newest break throughs too late for me?"

Iain rang Dr. Maeve the next day. She knew of the work but told him it was still very experimental.

Our friend Heather had recently undergone a hysterectomy. I was able to be a hospital visitor, it was strange to reverse the rolls after so long as a patient. I had to collect some more dressing packs from Treble ward. It was such a novel experience to walk in and straight out of the ward, I half expected to be called back and shown to a bed.

I bought some woollen tartan fabric from Liberties to make myself a skirt. I enjoyed getting out the sewing machine again and making myself some new clothes. I'd been influenced by all the "power dressing" females at the hospital and chose a straight style which would go well with my new blazer.

Barbara was able to bring us house Communion. We had all been disappointed at missing Iain's birthday. She reminded me of Red Riding Hood when she arrived with a basket covered with a white, hand embroidered table cloth. She unpacked a cross, she'd bought whilst on holiday in Brittany, and the pyx bearing the consecrated wafers. It was a very peaceful service as we sat in the sitting room with the log fire crackling.

We were soon able to attend Parish Communion at church again. After a six month absence it was a memorable event. Our friends were so pleased to see us there again. Iain was asked to read the lesson on the following Sunday.

Christmas was approaching fast. Barbara had recommended a shop in Teynham. With no crowds or parking problems. We managed to find several presents there and had them gift wrapped too.

We had already bought cards and some presents from The Leukaemia Research Fund catalogue. Our Christmas card list had grown considerably to include the many friends we had made during my illness. It was a good opportunity to update established friends on my progress and tell them about the transplant. There were also the friends we only contact at Christmas who knew nothing of what had been happening to us.

The boys came to lunch and stayed to decorate the house and tree. Cards came with every post. I was very upset when one arrived addressed just to Iain, Joan and James, a further reminder that the boys had left home.

We met Iain's children in Sevenoaks for a pre-Christmas lunch at the Harvester restaurant.

I met Olga in Canterbury and did more shopping. I was looking for a top to wear with my black trousers, to the Children's Ward staff party. I found a white angora jumper and trimmed it with red tinsel to cover my Hickman line. I'd not seen some of the staff since June so it was quite an event for me.

I was able to join Avril and Carole for a Christmas celebration, having missed the summer get together I was able to appreciate it more than ever.

We went to a performance of Handel's "Messiah", given by local choirs in All Saint's Church. We were amazed at the wealth of talent they displayed in their spine tingling interpretation.

Three days before Christmas I went to the Mountbatten Centre for yet another lumbar puncture and dose of methotrexate. The ward was festooned with cards from grateful patients and families. Helen came and we discussed her Christmas Day sermon. In talking to her I realised how special this Christmas was for me without the usual rush and bustle, it made me more aware of what Christmas should be about. Iain was able to take me home in the evening. Sister Louise was on duty and showed us the isolation rooms. I chose the one I wanted to be in for my transplant. The staff were looking forward to this as they didn't happen very often. Louise explained about the reverse barrier nursing and its restrictions of diet and visiting. It would be different here as the air immediately outside my room would be filtered. The room had been designed for the use of patients who needed long periods of isolation, there was an en-suite loo and shower.

Our mum's had helped with the Christmas fayre. My mum made our pudding and Olga made one of her famous white Christmas cakes. Iain had discovered frozen roast potatoes in Sainsbury's. We were determined to make this an easy and relaxing Christmas.

Christmas Eve followed its usual pattern of carols in Canterbury Cathedral with my parents. This is a very popular service but we had good seats in the nave. It began with the lights being dimmed as the solo voice of a choirboy echoed through the vaulted building, singing, "Once in Royal David's City". There were the familiar readings of the Christmas story and a blessing from the Archbishop. I wondered if this would be my last Christmas, it all seemed so special this year.

Mum had already prepared tea, sausage rolls, mince pies and the first slice of Christmas cake. Chris, Tom and Jen were able to join us to make a rare family gathering.

Tom came home on Christmas morning, just as we were getting up. We waited for him to wrap his presents and then had a grand present opening session in front of the fire!

The service at All Saints' Church was at 10.00am, I think I managed to coerce Chris into joining us, but Tom had some sleep to catch up on! It was good to have them both there for lunch and we had a bottle of champagne to celebrate my being there! I've always enjoyed cooking and setting the table for Christmas lunch and this year was no exception. I remember well the advice given to me by a colleague at my first school, she recommended a large glass of sherry before beginning and then you don't worry much about the outcome, you just enjoy it!

After lunch the boys went to their dad's and Iain and I settled in front of the fire with the licquers, nuts and chocolates. We did manage to have a short walk, "round the block" to give ourselves some fresh air and exercise. It was fun looking in on other people's Christmases as we walked passed houses with their curtains open.

Marion was "at home" on Boxing Day, so we called in at coffee time, before collecting my parents to taking them to Ramsgate, where Alan and Maggie had rented a flat for the holiday. They had splendid views across the harbour and out to sea. We ventured out after lunch, but it was bitterly cold and windy. We dodged the waves as they broke over the jetty. Ben was unusually quiet and lethargic, hardly surprising when he hatched chicken-pox a few days later.

Next day Helen rang to tell us that Maureen had died on Christmas Eve. The news made me feel that my own future was less certain, death seemed to be more an inevitability than ever before.

Chris missed the bus home from Emma's house. He'd warned me that her house was very isolated, but I thought I knew where it was, so Iain and I set out quite confidently to fetch him. We drove around the village a couple of times, asking several people for directions, finally we enquired in the pub before finding the cottage.

Tom arrived home very late (or early) again. Iain found this very irritating. Richard had given James a video which I didn't think was particularly suitable and I was anxious that Chris should not watch it. All in all I was finding the realities of everyday family life a little bit too demanding. I wasn't coping and almost wanted to escape back to the hospital.

Iain and his lads planned a shopping trip to Bromley for belated Christmas presents. This seemed a good opportunity for Chris and me to visit Doreen as she lives nearby in Orpington. This was the longest trip I'd made for several months. Doreen always gives the warmest of welcomes and we enjoyed our lunch and a bottle of their homemade wine made with their own grapes. But it was all very exhausting for me.

We had not made plans for New Year's Eve. It's one of those occasions when we hope something will turn up, but invariably, nothing does. We went to bed at 11pm.

"I had no desire to see the New Year in, '93 was no better than '92. What for '94? It frightens and depresses me."

I wrote in my diary:

    Iain's mum came for lunch on New Year's Day and Chris and Emma joined us.

On January 4th I was due to have my seventh and final lumbar puncture and infusion of methotrexate. First I went to Children's Ward to have coffee with Denise. It looked and felt rather like it had when I'd been for my interview. There were lots of new staff I didn't recognise.

The Mountbatten Centre was very quiet. Dr. Maggie came to take my blood for testing and sent me for an x-ray and an E.C.G. in readiness for the transplant. On returning to the ward Dr. Maeve was waiting to do another bone marrow biopsy. Helen called to say hello. I had to wait until 4 o'clock for the lumbar puncture.

Avril and John had been on holiday to Cyprus and brought me back a hand made lace collar. I enjoyed hearing about their trip.

Dr. Yvonne came and was very encouraging, talking about the transplant. At 8.15 Dr. Simon gave me a brief examination and allowed me to go home. I felt light headed and weary and went straight to bed.

Next morning I woke up with a very sore back and spent most of my day lying on the sofa.. It was no easier by evening so Iain rang the Mountbatten Centre. They advised me to have a hot bath. Iain checked that the sites of the biopsy and lumbar puncture were quite clean. My temperature was up a little when I went to bed.

There was no improvement next day and Iain stayed home. He rang Dr. Maggie at 9 o'clock and she arranged to meet us at the Accident Centre. She examined me, afraid I might have meningitis, but was satisfied I didn't and sent me home. Iain caught the next train to work and I spent another day on the sofa.

Tom had an appointment at 6 o'clock with a Personal Vetting government official, in connection with his job. Jen and I teased him about James Bond and boxes of Milk Tray chocolates, referring to the adverts of the time and adjourned to a bedroom, so that I could lie down and Tom could have his interview in the sitting room. I let them prepare supper.

By bedtime my temperature was up to 39. Iain rang the hospital again and spoke to Dr. Neil who rang Dr. Maeve at home in order to find out what I should do. I was admitted at 9pm. When we arrived the ward was quiet and peaceful, the lights were low and my bed turned back ready for me, it all looked so inviting. I was in such agony, it was a relief to surrender myself to safe, capable hands once more.

Dr. Neil examined me, it seemed I might have arachnoiditis, an inflammation of the spinal cord. The boys were highly amused by this name as the film "Arachnophobia" was doing the rounds at the time. Antibiotics were duly prescribed and administered. I spent a very uncomfortable night and had to have help even to turn over. We were becoming anxious. Would this interfere with the bone marrow harvest which was now only three days away?

Sharon came in next morning for a platelet transfusion,

"My white cells are all up the creek."

She told me, resolute as ever.

Helen came bearing a Winnie the Pooh balloon. We read the Bible readings for the following Sunday and discussed her sermon.

I was weighed and measured in preparation for the bone marrow harvest. It looked as though it might still go ahead.

As it was Friday and the centre would close for the weekend, I had to be moved.. Because my back was still very sore I was wheeled through the corridors on my bed and helped into the now familiar side room on Treble Ward. Nurse Julia, thoughtful as ever, organised my locker and buzzer, so that I could call for help if I needed it. Tom and Jen visited and I sent them home with a list of things I needed, obviously I was to stay a while.

By the Saturday morning my back was a little easier and my temperature normal. It seemed I had nothing more than severe bruising and inflammation from the lumbar puncture. I enjoyed a soak in the bath and a change into some clean clothes.

Dr. Yvonne came, she had looked at the slides of the latest biopsy and now introduced the term, "borderline quality bone marrow".

What did this mean?

We were confused and anxious. Dr. Maeve came and the two of them went into a huddle in the sister's office.

What was happening?

Maeve confirmed our worst fears,

"We may have missed the window."

A further bone marrow biopsy would be taken on the Monday, which would be sent to King's College Hospital in London for cytogenetic analysis. This had never been mentioned before, but she assured us it was all part of the routine preliminaries prior to transplantation. Two out of every three patients,

"Get through this hoop," she told us.

The harvest would be cancelled and the theatre re-booked for the following week. We really weren't feeling terribly hopeful. We had been so near to the transplant, now I felt we were right back where we had been a month before. We had been expecting too much again!

Iain beat a hasty retreat after this conversation with Dr. Maeve. He was terribly upset, I wished he had stayed, because I was too and needed to share that with him.

I slept for a while- my escape from reality. Sister Karen came to talk with me, advising me to look upon it as a "temporary hiccup."

I wrote,

"I feel we've lost a month waiting now. Somewhere I want to be able to say: "this is the first day of the rest of my life." "

There was an understandable urgency to get on with whatever life I had left to me.

In the evening we went to a party in the hospital organised by the Optimists, a group set up to help cancer patients and their families. You are automatically a member when you attend the Mountbatten Centre for treatment.

Iain brought in my "posh frock" and I enjoyed being able to dress up and feeling that we had a social life again. It was strange walking out through the ward and through the hospital. The corridors were strangely dim and deserted, I'd never seen them like that before.

When we arrived people were talking in groups. I soon spotted Jay but I don't think she recognised me at first, she hadn't seen me with my wig before. She explained that there had been a mix up with the catering arrangements and Paul had gone to the Pizza Hut to buy extra provisions. I recognised other people that I'd met in the Mountbatten Centre. Iain went to get some chairs for us and returned with a park bench from the waiting area! My back still made it impossible for me to sit comfortably for long periods. There was a fancy dress competition for the best dressed dracular, won by the chief executive. There was live music and games. We laughed a lot, but then one always does in Paul's company.

We left at about 10pm. It all felt very strange, Iain taking me back to the ward and leaving me there, a bit like a first date. We had briefly forgotten our problems. I was feeling very tired. Sister Jane, who had helped organise the party came to the ward and gave me a lovely basket of flowers from the Optimists. I was very touched by this gesture. I was feeling very sad and weepy. I felt the fight for life was greater than I could cope with. This latest set back seemed so cruel, we had been so near to a transplant and now it all seemed far away.

Next morning being Sunday, we went to Communion in the chapel. There is a fine view over Canterbury from the windows and as I gazed out over the city my attention was drawn to the reflection of candle light on the glass, it gave a bright, steady light, very symbolic.

Monday 10th January was not the day we had hoped it would be. At 11am Dr. Maeve came to do the biopsy. After she had carried out the procedure she left my room for something, leaving the phial of bone marrow on my bed table. I remember looking at it, somehow my future seemed to be contained within it. I looked at it and prayed and hoped and thought positive thoughts, like I'd never done before.

Since I was not in isolation or attached to an intravenous drip, I used to go off for walks around the hospital grounds. Visiting colleagues on Children's Ward, having tea at the Charity shop and going to post letters.

I was to have a kidney function test on the Thursday. Since this had already been booked I kept the appointment. The Department of Nuclear Medicine was on the opposite side of the hospital campus, so I took the opportunity to walk there. The test involved having dye injected into my arm and having blood tests taken at regular intervals after this. I had time to walk back to the ward between each test, thoroughly enjoying the fresh air and freedom this allowed me.

It was late in the afternoon when Drs. Maeve and Maggie came. They had the results from King's College Hospital. I could not have the bone marrow transplant. The cytogenetic tests showed that I still had leukaemic cells in my bone marrow. But King's were offering the possibility of a new treatment called a stem cell transplant, the procedure I'd heard about on the radio only a few weeks before. An appointment had already been made for me for 10am on the following Wednesday. I was to see Dr.Tony, tall, dark and of Italian extraction.

I asked the question no one ever asks,

"Without further treatment, how long will it be before I relapse?"

Maeve told me about two months.

So short a time.

Not long.

But I could be like Sharon and have more chemotherapy, but it was only buying me time.

I cried.

Maggie cried, "It ain't bloody fair," she said for all of us.

I felt numbed, devastated.

Was this really happening to me?

Dr. Maeve made arrangements to see Iain and me in her office in the Path. Lab. on Saturday morning to discuss our options.

Helen arrived. Dr. Maggie had been very thoughtful and bleeped her, guessing that I would want to see her after having been given such dreadful news. I'm not sure what we talked about. I repeated all that had been said. She quoted Psalm 91, where the writer speaks of God as his "refuge and fortress", giving protection and courage,

"he shall give his angels charge over thee, to keep thee in all thy ways."

I was so pleased when Tom and Jen arrived. He asked about the test results. He too asked how long it would be before I relapsed. It was a relief that he asked these questions and understood the situation. There had been times when we had worried that he was not facing up to things. The last thing I needed at this time was to have to pretend that everything was going to be fine.

Iain came around 8.30pm. It had been a very long wait. I repeated all I could recall of my conversation with Dr. Maeve. He wasn't at all keen on the idea of experimental treatment in London. We cried together. We wondered what we should tell my parents. How could we tell Chris that I had months rather than years to live?

Iain left at 11pm when I had my final dose of antibiotics. I turned to my A.S.B., it opened at Psalm 80,

"Restore us again O Lord of hosts, show us the light of your countenance."

I felt strangely tranquil when I woke the next morning. Everything felt a bit unreal. Sister Karen came to talk to me. Giving really constructive advice, suggesting Iain should work part time, reminding me that other people needed to spend time with me too, the boys, my parents and friends.

I bought the newspaper, the cartoon seemed to be just for me that day:

                                    PEANUTS CARTOON !

Dr. Yvonne came to talk. I asked her advice about what we should tell people. She offered to speak with the boys, as she had when I had first been diagnosed. She advised me to go out and "be feckless."

I was due to have a lung function test as part of the preparation for the transplant. It all seemed a bit pointless now but I went anyway. Iain arrived and we walked to the Outpatients department. I cried as we waited to go in. The nurse on duty was very kind, but obviously had no idea what was wrong.

We walked back to the ward. Iain went to see my parents and bring them up to date with what was happening. I went to see Denise in Children's Ward. Everyone there was rather upset as one of our regular, handicapped patients had died at home the previous night. Apparently she had woken up, smiled and said good-bye to her mum. She hadn't been scared, why should I be?

I gave them my news as best I could. I didn't want to be too blatant, but I wanted them to realise the situation.

On returning to the ward I was told I could go home. I walked to pharmacy to collect my tablets to take home. Iain, Chris and Emma came to meet me.

Chapter 7

We drove Emma home, then took Chris to his dad's. We talked to him about the results of my test, not sure exactly what or how much to tell him. He asked,

"Is it a question of, when, or, if you relapse?"

I was amazed. Both boys seemed to have asked the right questions at the right time. They both seemed to have grasped the situation. I didn't feel we had to soften things for them, all this made things easier for me.

We couldn't make up our minds whether to eat in or go out for supper. Verity rang to find out how I was. Whatever she said spurred us into going to Giovanni's for our meal. This is Whitstable's most expensive restaurant. We talked about my dying and what Iain should do. It was all in very general terms, we didn't come to any major decisions or conclusions.

Following Dr. Yvonne's advice to be feckless we went shopping for an expensive coat in Liberties. I wore it out of the shop, feeling extremely smart. Our next stop was the travel agents, where we collected brochures on bargain breaks to Florence. As we sat eating our lunch in a restaurant, I caught sight of a young family and was very grateful that I hadn't been faced with leukaemia and leaving a young family.

We took the boys and Jen for Sunday lunch at a local pub. There was lots of fun and laughter.

On Monday morning Iain went for a hair cut. The barber told him he looked really fed up. How on earth do you tell a comparative stranger that something as traumatic as this is happening in your life?

I kept my appointment with the reflexologist on Tuesday and then went to see Helen in

her office. I wanted to talk to her. At this time I was desperately searching for someone to tell me how to behave or the right way to conduct myself, given the present circumstances. I'd always been able to read books to prepare me for the major events in my life. I suppose that had begun when my mother had given me books on the facts of life early in adolescence. I'd been able to read about marriage, childbirth, divorce and being a step parent. I somehow expected there should now be a handbook on death and dying. It was many months later that a friend from church pointed out to me that it is a totally unique situation, no one's been there and been able to come back and tell us what happens or what it's like. Roy Castle joked about this in a television interview after his relapse, saying that no one had come back to complain yet! Maybe he had felt these things too.

Helen was reassuring, as ever, saying that I seemed to be doing the right things. I asked how Maureen had acted at this time. She told me of another cancer patient she had known who used to say that he was O.K, it was his cancer that was not.

In our discussions Iain and I talked about the Sharon Road and the King's Road. In other words following the route Sharon was now on: waiting for relapse and then having further chemotherapy. The King's road referred to the possibility of having the new stem cell treatment. I discussed these now with Helen. Ironically when I talked to her about the King's road she thought I was alluding to the way in which we felt God was directing us.

After lots of tears and talk I left Helen and walked to my parent's house. What would I say to them? How should I act? I was very conscious that dad was doing too much talking. He made the tea. I wondered just what he was thinking and feeling at that time.

Wednesday 19th January. The alarm went at 6am. and we were well on our way to London by 7am. I felt as though I was going on holiday. We found the hospital in Denmark Hill without too much trouble. We met not Dr. Tony, as we had expected but Dr. Mufti, a tiny Sri Lankan with an obvious sense of humour. He took a brief medical history and was very interested to know if I'd ever been in contact with any chemicals, I could not think of any such instances. He examined me. He explained the procedure for a stem cell transplant. I would have another course of chemotherapy, followed by a period of isolation when I would have daily injections of granulocyte colony stimulating factor (GCSF), which stimulates the growth of new blood cells. The stem cells would then be harvested over a three day period at King's College Hospital, where I would attend as an outpatient. I would then have a further course of chemotherapy, the stem cells would be given back to me by transfusion and I would be isolated at King's while my bone marrow regenerated once again. Dr. Mufti seemed confident; in his opinion, not going ahead with the procedure would have been a waste of the four courses of chemotherapy I had already been given. There were only 2% leukaemic cells remaining in my blood, he did not think it would be a problem to eradicate these.

We were shown the Derek Mitchell Ward, where the transplant would take place. It opened in December 1992, having been specially adapted for such work. There were five single rooms, each with its own loo, basin,shower, T.V., fridge and incoming telephone. The whole unit had an air filtration system so visitors did not have to wear gowns, masks, hats and gloves. All very different from what we were used to at Canterbury.

Dr. Mufti took us back to the main reception desk of the hospital and wrote his phone number on a piece of paper for us to call him when we had made our decision.

We went to have some coffee. I was desperate for Iain to give some indication of what he was feeling about all this. Dr. Mufti was confident of success, he had given me new hope. I had realised during the last week just how important hope is. Without it it is hard to go on living. I understand St. Paul writing to the people of Corinth:

"In this life we have three great lasting qualities - faith, hope and love."

Iain and I quickly agreed that the stem cell transplant was our way forward. Ironically Dr. Mufti had written his number on a pad distributed by medical reps trying to sell a particular brand of insulin, on the bottom was written,

"NOW YOU HAVE A CHOICE".

We had arranged to meet Alan and Maggie for lunch. They appeared at noon, having found the famous, "Phoenix and Firkin" pub, built on Denmark Hill railway station following a fire. It offered a wonderful assortment of salads and served excellent beer, and was to give Iain much succour in the coming months!

Alan and Maggie were encouraging and very reassuring about the decision we had made.

We left the pub around 2pm and filled the car up with petrol. We had planned to have a long weekend visiting Devon and Cornwall. I had received lots of support from my Aunt and her family in Devon and as I'd not seen her for at least 15 years felt I wanted to go and visit her. Several Milletts are buried in and around Penzance, so we thought we could see Cornwall too.

The traffic was heavy as we headed out of London towards the M4. I dozed some of the way. We stopped for tea at the motorway services at Sedgemoor. From where Iain rang his boss to tell him what the hospital had said. He offered Iain compassionate leave for the days we would be away.

We reached the country house hotel we had booked just outside Okehampton, in time for a long soaky bath before supper. It was really pretty with low oak beams, pine furniture and pretty flowery curtains and drapes. The food was excellent. C'est la vie......

Next day we attempted to brave the damp and cold and walked on Sourton Tor but we were soon enveloped in a blanket of mist and had to imagine the fine views into Cornwall.

We drove into Holsworthy to find Aunty Peggy and Uncle Albert. They both looked well. We chatted about the family. I had taken some photographs of the boys to show them. Uncle Albert had once been a church organist and he entertained us on his piano. He and Iain had a heated discussion about women priests.

Iain used their phone to ring Dr. Mufti and tell him of our decision. Arrangements would be made for me to be admitted to Canterbury hospital for the next session of chemotherapy, prior to the stem cell transplant.

My cousin, Liz came for supper and there was more family talk.

We drove back to our hotel through the dark and horizontal rain my aunt had warned us of.

Next morning over breakfast we planned our route to Cornwall. We decided to go via Wadebridge to see the boatyard where Cornish Shrimpers are built. Iain had been to the Boat Show the previous week and brought their brochures home to dream with. It took some finding as it was some way out of the town. One of the partners took us round. It was fascinating to see the boats at the various stages of production. I particularly liked the solid wooden masts. We came away with more brochures and price lists.

Iain realised we were very near to Trebetherick, where the poet John Betjeman had lived. We parked the car by the beach. The sun greeted us and we walked along the sands paddling in our wellington boots. We followed the path across the sand dunes to the church of St. Enodoc, where Betjeman is buried. It is a very peaceful place and quite deserted in January. Apparently the dunes have been known to cover the church and the only means of access for the priest to read the daily office was via a trap door in the roof.

We reached Penzance in the middle of the afternoon. I was feeling very tired and in need of sleep. We tried several hotels, they were either full, cold or being repainted ready for the summer season. We picked a guest house as a last resort. I collapsed into sleep whilst Iain explored the town. I had a quick dip in the rather unsavoury hip bath before eating supper in the "Turk's Head". We needed an early night but the bed was uncomfortable and Iain was sure he was being bitten!

After waking early, we ate a hearty breakfast, packed, paid the bill and ran. Then we shopped in the town and were made welcome in the church, recently rebuilt after considerable fire damage. We found the family graves. It was still cold and damp so we found the car and drove along the coast to Mousehole and Lamorna Cove. The sun came out as we reached Porthcurno and the Minach Theatre. I have vivid memories of the beautiful colours there,the greens and browns in the watery winter sun. Land's End was clear and sunny. We asked some fellow sightseers to take our photograph. We went into the hotel for coffee and rather wished we had spent the night there. It was warm and comfortable and boasts some stunning sea views. Iain rang Drs. Yvonne and Maeve to tell them of our decision.

We had a Cornish Pasty for lunch in Sennen and then drove to St. Just from where Iain's forebears originate. Of course there are more Milletts buried here and commemorated on plaques inside the church. I bought myself a copper thimble as a souvenir of the village.

Considering all the damp and gloom of Cornwall, or maybe it was all those Millett graves, we elected to head for Exeter and spend a comfortable night in the Trust House there, thus enabling us to attend a Sunday morning service in the cathedral.

It was dark by the time we reached Exeter. We walked to the cathedral to see if anything was happening there that evening. Nothing was scheduled but we were given a warm welcome by some ladies in the Chapter House who invited us to coffee after the service the next day. We did some window shopping before returning to the hotel for a leisurely bath and supper.

I slept well and really did not want to get up. I was enjoying this luxurious living, away from the realities awaiting us on our return home.

We were surprised to find the altar in Exeter Cathedral set "in the round", with the congregation seated around it. The choir was impressive. The theme for the day was, signs and miracles. We sat down for the Old Testament reading, I seemed to recognise the voice of the reader and looking up realised it was the partner we'd met at the boatbuilders. Iain and I looked at each other, what a coincidence, (or was it another of Christopher's Godincidences?). Could this be a sign for Iain's dream boat to become a reality I wondered? The sermon was preached by the Sub Dean, he recalled visiting Solemnes Abbey in France during his holidays, as we had two years earlier. He spoke of the many different ways in which the Lord manifests himself to us. We sang the final hymn,

"Soldiers of Christ arise and put your armour on,"

I really felt I was going home to do just that. The last line ends,

"and stand entire at last."

I wondered just what that meant for me.

After the service we went to the Chapter House, our friends of the previous evening greeted us. We felt able to tell our story when asked what had brought us to Exeter. We spoke to Gary from Cornish Shrimpers. I asked him if he had ever sold a boat before whilst reading the lesson!

We went back to the hotel to pay the bill and collect the car. By the time we reached Clacket's Lane services on the M25 we needed a break. We rang Tim and Maggie's home in Orpington and invited ourselves to tea and were given supper. They were so pleased to see us and it was wonderful to be able to share more positive news with them. Tim was very enthusiastic about our boat buying plans too.

We made it home around 6.30pm.

I had just Monday at home before embarking on the next course of chemotherapy. That evening Iain filled out the order for the boat. I was adamant he should do this. O.K. we couldn't really afford it, but I felt he needed something to look forward to, something to plan for, something positive on the horizon.

I felt warm and comfortable in my bed next morning. I felt safe there and didn't want to get up. What was in store for me now I wondered? I packed a bag, unsure if it was to be for four days or four weeks. We didn't know how quickly my white count would drop and I'd need to go into isolation. I might be home again for the weekend.

As we left home we saw a removal van at the vicarage. The new vicar was arriving. I hoped I would get to meet him.

The Mountbatten Centre was hectic when we arrived. Sharon was there, having more platelets and Christine was having her two weekly blood transfusion. I felt I was among friends.

My next bed neighbour was a Dutch lady who talked incessantly, this was to prove a little irritating by the end of the week.

Iain and I had supper in the staff restaurant before beginning my treatment at 9pm. I was to have infusions night and morning for four days. I was fast asleep before the first one was finished.

I'd forgotten about the delicious scrambled egg Nurse Denise made and so thoroughly enjoyed my breakfast.

Apart from the chemotherapy I was to need various other things to counteract possible side effects from the chemotherapy, including eye drops and tablets to prevent a build up of uric acid and gout! Nurse Jane came to see me, she was extremely supportive and admired our decision to go ahead with the stem cell transplant.

I had a relaxation session booked with Frances. She showed me how to use Rainbow Meditation. This involves imagining each colour of the rainbow and cocooning yourself within it.

Mum rang me to say that dad was unwell. She had called the GP who had diagnosed a mini-stroke. There didn't seem to be any lasting damage, he just needed to take things easy for a few days.

Iain met Tim and some ex-colleagues for lunch in London. When he visited in the evening he was very excited about the boat. He had decided to call it "Mince Pies". We saw it as a guarantee for his future. If I survived and was able to enjoy it too that would be a bonus. I knew too, that whatever happened there would be lots of support from friends like Tim and Maggie.

We supped at the staff restaurant again and then decided to really escape. We went for a drive in the car. I really felt like a truant. The BBC were serialising "Middlemarch" on television and I enjoyed being able to follow this whilst having my evening dose of chemotherapy.

Sister Louise asked me to write an article about being a patient in the Mountbatten Centre for the Optomist's Newsletter. I, obviously, was well experienced to do this.

An infection had developed in my Hickman Line so antibiotics were being administered through the line to try to kill the bugs.

On Friday I had the usual weekend transfer to Treble Ward. I sent my belongings ahead in the wheelchair they had sent for me and walked the "scenic route" with Lesley, taking the opportunity to get some fresh air and exercise. I had an aromatherapy session booked with Abi and then had a toasted tea cake and tea in the charity shop. I was in no hurry to surrender myself to the ward.

It felt strange as I'd not been in the ward as a patient for three months. I was surrounded by strangers again. Emma's mum had been to visit me and had left a bunch of snowdrops which she had picked from her garden. I was touched and heartened by the gesture and only too sorry to have missed her.

On Saturday morning Pip and Richard came to see me. Pip was very enthusiastic about my hair. It was growing back, thin and grey. I looked a bit like Judi Dench, Pip said. Richard is always bright and cheerful, as he left he remarked,

"I'll see you at Easter,"

that was so encouraging as by then my treatment would be finished and another milestone reached.

I slept for an hour after they had gone and while everyone else had their visitors. Then chatted to the elderly lady in the bed opposite me. She had overheard us talking about our frozen roast potatoes and thought they would be a convenient idea for her as she lived on her own. She told me about her family.

My last dose of chemotherapy finished at 3am on Sunday morning. I was promptly sick. Unusual right at the end of treatment. But I was feeling anxious as my GCSF injections were due to start that day and we weren't too sure what the side effects of this might be. Drs Maeve and Yvonne had expressed some concern that it might "tickle up" the leukaemic cells as well as the healthy new blood cells, but Dr Mufti had not shared this view.

In the morning Sister Karen moved me into the side ward, ready for my isolation. She gave me my first injection. She had been involved in the original trials of the drug at her previous hospital. I felt encouraged by this.

I was allowed a day-trip home. It was a beautiful, sunny, crisp morning but it felt strange going home like this. I had coffee and toast followed by a soak in a hot bath. I could hear the church bells ringing as I relaxed in the bubbles.

We went for a walk by the sea and posted the order for the boat. After Pip's encouraging comments about my hair I decided not to wear my wig, but it was cold and I felt very self conscious not wearing it. We shopped at a nearby store buying ice cream for lunch. We were amused to hear a couple arguing in the shop- other people's Sundays. It really made us realise what quality of life is all about.

Chris had to do a geography project comparing different types of holiday locations. We reminisced as we looked at the photographs taken on our holidays together. It was painful to see how robust and healthy I had looked. I had hair too, thick and dark and curly.

Tom and Jen came for lunch. Everything felt strange, I knew I wasn't staying, I had to be back at the hospital for 9pm, I felt like a guest in my own home. I wasn't sure quite where I belonged.

The phlebotamist who came to do my blood test on Monday morning told me how she had trained as a dental nurse. Part of the training was to check patient's mouths for unusual lumps or swellings. She recalled a child who had leukaemia diagnosed in this way and died six weeks later. Just another reminder of how lucky I was to be alive. I'm writing this some two years on and have just returned from my check up with the dentist. I'm pleased to report that she too now has a very thorough check of the mouth, gums and tongue as well as the teeth.

Tom rang to say he had a cold and would not be visiting. He had also heard that his work would take him to Damascus on 20th March. This would be his first trip abroad with the company, something he had been looking forward to for a long time. I wondered where I would be by then, Canterbury Hospital, King's College Hospital or at home?

Dr. Yvonne did her rounds. She admitted that she was out of her depths with my treatment, but Dr. Mufti was orchestrating things from London. He had said that I was in, "good shape", which was very encouraging. Yvonne suggested that I might be allowed out for lunch the next day, but it depended on the results of the blood test.

Iain visited after work and we watched Panorama with interest. The programme was reporting on the links between childhood leukaemia and electro-magnetic fields. One day a reason has to be found for this illness.

Tuesday was a frustrating day as I waited for the results of the blood tests to see if I could go out. The results finally came at 5pm, my white count had dropped from 4.3 to 1.5, which meant I very definitely could not go out. In fact the door would be shut and my isolation would begin the day after next and last between two to three weeks.

John, from the next room introduced himself and we chatted from time to time during the day. I showed him the photographs of our west country trip and discovered that his partner, Sally's, great-grandfather, Septimus was the vicar at St. Enodoc's Church in Trebetherick who had used the trap door in the roof to gain entry to the church. Another Godincidence maybe. John was moved to a surgical ward but Sally used to call in most days to update me on his progress.

Frances brought a cassette for relaxation that I had asked her to make for me, along the lines of our sessions together. With exercises to relax the whole body and imaginary journeys, exploring the surroundings by using the senses. She had finished the tape with a selection of classical music.

Philippa came to do some reflexology on my feet, which was also relaxing.

Mum and dad came to visit. They came by bus instead of walking as they usually did. It was good to see dad again, he seemed quite recovered.

When Iain visited that night he brought the phone and rigged the intercom already for the next day.

Thursday 3rd of February was an ideal day to begin isolation. It was wet and windy outside but I felt quite snug in my little room.

Nurse Marie talked to me about June. She had visited her at the hospice where she had been very happy. Her drugs had been sorted and her pain controlled to such an extent that she could go home, where she had died in November.

Iain arrived at 8.50 for his evening visit. I felt annoyed with him, it seemed silly for him to come so late. I'm not sure if my concern had been for him or myself. I suggested that he had Friday night at home as he would be in on Saturday morning. It was clearly an exhausting time for him, going to work all day, coming home and then coming to the hospital to visit me and for how much longer would it go on?

Denise was visiting every day again. She brought a flower box made of paper which she Blu-Tac'd to the window and each day the children from the ward made a flower or butterfly to go in it

I was having regular transfusions of blood and platelets as the chemotherapy began to take effect. My mouth was getting sore. So was my bottom, it was bleeding by now. Helen suggested that the hard loo paper provided by the N.H.S. might not be helping me so mum brought me something softer which helped a little.

I was keeping myself busy. I had established my usual isolation routine.

Helen had brought her landing curtains for me to sew the hems. She had recently moved to a new house and I was pleased to have something different to sew. My tapestry was growing slowly. I managed to do a couple of rows most days. People were still telling me I was doing it wrong: it had become my rebellion!

It was at this time that I discovered the delights of cross-stitch embroidery. I realised that I'd not bought Iain a card for Valentine's Day and decided it would be nice to make one. I enlisted Lesley's help as she is quite an expert in the field. She brought me some fabric , thread, needles, a frame and a design from her collection and started me off- albeit through glass, challenging me to keep the back as neat as the front- unlike my tapestry. I soon got the hang of it and was pleased with my efforts. But the finished work needed pressing and mounting- difficult when in isolation. Helen took it and pressed it and donated a Pritt stick, remarking that, "creativity is God like". Chris went to CandH Fabrics and chose a card to mount it in and so with our joint efforts the card was ready for February 14th.

Iain's mum lent me the autobiography, "Some Other Rainbow", by Jill Morrell and John McCarthy. Telling of his experiences as a hostage in Beirut. I suppose there are similarities with his situation and being in isolation as part of the treatment for leukaemia.

The following Tuesday Sharon was admitted. She was very poorly. Somehow her being there so close to death confirmed that we had made the right choice, to go ahead with the transplant.

Brenda, a friend from church came to visit. It was in explaining the treatment to her that I suddenly realised that it could actually be successful and give me some long term remission. It was quite a remarkable experience allowing myself the luxury of thinking that this could work. Did I dare to hope?

Margaret, a student nurse, came to do my observations and we talked about death and dying. It was a subject few people seemed able to talk about. She gave me a copy of "The Dying Person's Bill of Rights", it lists sixteen points a dying person has the rights to with regard to their treatment, carers and family. I identified with,

"I have the right to maintain a sense of hopefulness."

My hair was beginning to fall out again, "looks a bit like cat fur," I wrote in my diary.

Mum and dad were walking to the hospital again now. But I was finding visitors very tiring. It was often hard to find things to talk about. Sometimes I just wanted to sleep

Sue sent me a card with the words,

"All shall be well, and all shall be well, and all manner of things shall be well."

This is a quote from Julian of Norwich. I had no idea who she was but found the sentiments comforting.

Keith was a regular visitor. He told me he was planning an ecumenical gathering to be called, "Wellspring" which would be held at Aylesford Priory, near Maidstone on 17th June 1995. It seemed a long way off. Would I make it there? Keith promised to buy me lunch if I did. (I did make it but Keith was too busy with the Bishop to buy me lunch!).

I became alarmed on Saturday morning when I had a flow back of blood into my Hickman line, it soon turned into a flood back. It was frightening not knowing what was causing this to happen. I was glad Iain was with me. I thought the switch had broken. But it soon righted itself and cleared.

I was aware that Sharon was sleeping more and more. A Z-bed was brought for her husband to sleep on. It brought back painful memories of when I was first diagnosed. I made up my mind then, that I would like to die at home and not in hospital.

Monday 14th February, St. Valentine's Day It snowed in the morning. My G.C.S.F. injection made my arm swell as though there was an egg in it. At 11.45am Dr. Maggie came in, she wasn't wearing a gown or mask, she told me Sharon had just died, "But that's not going to happen to you," she told me.

A balloon with the words, "You're irresistible" was delivered from Iain, with a card.

Nurse Wendy came to tell me she had washed Sharon and that she looked really peaceful. I appreciated the way in which the staff shared Sharon's death with me, telling me what was happening to her. They didn't try to hide it from me or protect me from it. Nurse Clare asked me if I wanted to draw my curtains when the porters came to take her away. This is the usual practise on the ward, all the curtains are drawn round the beds. I'm not sure if it's a mark of respect or so the other patients don't see the box being wheeled away. I didn't close my curtains and to this day I regret not waving good-bye to Sharon as they took her away.

There were two other deaths on the ward that morning. Nurses Clare and Vikki looked completely drained when they went off duty. They told me they were going to "The Plough and Harrow" and what would I like?

I gave Iain his card when he came that evening. He was very touched by it.

Next day I woke feeling hot, headachey and hungover and I hadn't been anywhere near "The PLough and Harrow". I had a temperature so blood cultures were taken and antibiotics prescribed.

Blood was flowing back through the line again. Nurse Jane came and systematically checked it. She confirmed my original fear that the switch had broken. She was able to replace it with a spare part from a new line. Much to my relief. This was short lived however as the line became blocked during a blood transfusion. The nurse was able to clear it.

I had a bad night. The transfusion finished about 4am, so I was being observed all through the night. I became agitated waiting for my line to be flushed and disconnected. I was afraid the line would block again.

I woke at 6.30am feeling very tearful and rang Iain asking him to stay down with me. He arrived at 8 o'clock and rang the office to tell them he wouldn't be in. He helped me to wash and dress. We asked if I could flush my own line and "bung myself off" after a transfusion. The staff were so overworked that this seemed the only way I could ensure that my line would not become blocked. This helped to alleviate my anxieties. Denise took Iain to have coffee in "Three Bears House" while I caught up on some sleep.

The results from the blood tests showed I had another infection in the line.

Iain went to Hollowshore boatyard to reserve a mooring for "Mince Pies".

Two days later my temperature was still high so my antibiotics were changed. The senior nursing staff were not happy that I was flushing and dressing my own line. This was basic nursing care to which I was entitled. They were concerned that I might be infecting myself. I found this all rather distressing.

"I shouldn't have to be coping with all this," I wrote in my diary.

I slept badly again. Going over past events and memories. I found myself worrying about who would make the sandwiches at my funeral!

Lindsey and Tony came to see me, bringing a woolly lamb with them.

I was also sent a carnation by the owner of a local restaurant which I'd recommended to Helen. Since I was not allowed flowers she put it in the window of the chapel where I could see it from my room.

My temperature still hadn't settled. I was allowed one sheet on my bed and we turned the radiator off in order to try to get it back to normal. I was,

"very cold and miserable and it all seems to be taking a long time." I wrote on Monday 21st February.

Gradually as the white count increased my temperature dropped. On Thursday Dr. Maggie came to do the usual morning blood collection. It wasn't until she apologised for having eaten garlic that I realised she had no mask, gown or hat. The door was open once again after 21 days of isolation.

I was allowed flowers again. Iain brought me some cheery daffodils as a reminder that spring was almost here.

Dr. Maeve did her rounds. She had been trying to get in touch with King's to find out what should happen next and if I could go home. Dr. Maggie called in as she was passing by to see another patient. We were very encouraged by her comment,

"There are good, solid reasons why this could work."

By Saturday I had sufficient neutrophils to be allowed home, at least for the night.

Chapter 8

Next morning I weighed myself and was somewhat horrified to find I had gained more than the stone Dr. Yvonne had recommended. 10st 7lbs. I felt like Mrs. Blobby. But I had been assured that there would be days during the transplant procedure when I would be unable to eat.

On Sunday morning I had to go back to Treble Ward for a blood test. We were able to go to the chapel service while we waited for the results. Alan was in my room when we got back. He brought me a very friendly looking pig he had made me in his pottery class, another for my collection.

Dr. Maeve came to say my blood levels were fine and I could be discharged but would have to attend Mountbatten Centre next day as an out patient for another platelet transfusion. We hurriedly stripped the room and packed my possessions. We dropped Alan at the railway station and drove to Hollowshore to look at the mooring Iain had booked. It was good to be walking in the fresh air.

Next day I went with Iain to Sainsbury's to help with the shopping. Once again I found it a very tiring and overwhelming experience.

That afternoon I went back to the hospital for my G.C.S.F. injection and platelets.

Tuesday's blood test had to be sent to King's College Hospital for analysis. The results were back on Wednesday afternoon and Yvonne had my instructions for the stem cell harvest. I had to report to R.D.Lawrence ward at 1pm Thursday 3rd March, next day.

"Here at last," I wrote.

We left home at 10am and had a good drive to Denmark Hill. We had an early lunch in the "Phoenix and Firkin". My feelings were a mixture of apprehension, excitement, anxiety and hope as we were shown to the day room to await Dr. Alex. He was a research fellow from Serbia. He took one look at the purpura spots on my legs and demanded a blood test. My platelet level was just 16, far too low to undergo the harvesting process. He sent me to pathology where I was given the usual piriton and hydrocortizone injection to cover me from any adverse side effects from the platelet transfusion. The nurses were fascinated by my line as it was different from the ones fitted there. My platelet count immediately rose to 60.

"Let's go," was Dr. Alex's comment as he escorted me back to the ward. But it seemed we weren't there yet. He warned me that he still had to find a good vein to use and that my Hickman Line might not withstand the pressure involved as the blood went through it. My heart sank. I began to wonder if I would ever get to transplant.

I was ushered to the comfy Parker-Knoll reclining chair next to the cell separator machine, which was kept in a small windowless store-room in the centre of the ward. It was very hot and airless so I elected to take off my wig and woolly jumper. At this point Dr. Mufti and the lovely Dr. Tony decided to do their ward round; Dr. Yvonne and Maeve would love this story! The nurses were a little perturbed by my state of semi-undress, but as I pointed out, we all wear a lot less than I was wearing when we're on the beach in the summer.

The cell separator is a large machine (rather like those used in kidney dialysis), with many dials and tubes attached to it. I was connected to it via my Hickman Line and a cannula in my arm. The idea is that the blood circulates through the machine, where it is spun in a centrifuge so that the cells become separated. The young stem cells are removed and collected in a bag and the rest of the blood is then passed back into the body via the cannula. During each harvesting the blood passes through the centrifuge three times.

There were problems with my blood clotting in the cannula before the treatment began, so the opposite arm was used instead. The Hickman Line seemed to stand up to the pressure without any problems. It was 4pm before things were underway. Iain sat opposite me on a metal storage trunk which reminded me of his school tuck box. There was nothing much to do as my blood went through the system. As Dr. Alex sealed the first gold bag containing the salmon pink coloured cells, he held them aloft very proudly saying,

"These will save your life."

They were then stored in a vat of liquid nitrogen with the other cells yet to be harvested until I was ready for transplantation. A sample of these cells would have to be very carefully examined for any signs of leukaemic cells.

I needed another platelet transfusion after the harvest in order to replace what had been lost in the process and I also needed my daily injection of GCSF. It was 7pm by the time all this was done and 9pm by the time we reached home. I wrote,

"I feel better than I've felt for a long time. Hope springs eternal."

But poor Iain was absolutely shattered.

We were on the road again by 7am for the next day's harvest. We didn't need to meet Dr. Alex until 10am but really had no idea how heavy the traffic might be so early in the morning and arrived with time to spare. We went to a Sainsbury's near to the hospital to stock up with food. It left me feeling tired and weak after the journey.

My platelet count was 43. I was relieved to hear those words again from Dr. Alex,

"O.K. let's go!"

The cannula blocked again as my blood clotted in it. So he used my right arm but it was very uncomfortable and I needed to keep clenching my fist onto a roll of bandage in order to maintain "access pressure" on the machine. I didn't like to complain about the discomfort I was experiencing in my arm. Everytime the pressure fell an alarm would sound on the machine.

Iain decided to go to the "Sailing Centre"; there was nothing practical he could do and it was all rather tedious. He returned at 2pm having bought charts and books on navigation to assist with the trips he was planning for the summer in "Mince Pies". By this time my arm was very sore and painful, but we had another gold bag full of wonderful pink stem cells.

Dr. Alex arranged to meet us in Out Patients an hour later. There we were told I would need to return next day for a third harvesting session in order to ensure there were sufficient cells for a transplant. I also needed another GCSF injection, but for financial reasons this would have to be given at Canterbury Hospital.

I left the hospital tired, dejected, hungry and in tears. What an ordeal this was turning into. I felt I just wanted to be whole again.

It was fortunate that Iain was carrying the mobile phone. He phoned Dr. Yvonne to tell her what was happening. The traffic was heavy and it was 5.30 by the time we arrived on Treble Ward, but the GCSF had not arrived from pharmacy. We sought refuge, tea and cake in the staff restaurant, before returning to the ward for my injection.. Then it was home, supper, bath and bed by 9pm, feeling utterly exhausted.

We had a clear run to Denmark Hill next morning, being a Saturday. My platelet count was 23 which warranted another,

"O.K. let's go." from Alex. He had an anti-coagulant already so there were no problems inserting the cannula and there was no discomfort once it was in place. The harvest was complete by 1.30 but my platelet count had dropped to 10. Arrangements were made for the platelets to be sent from the regional centre at Tooting to Canterbury where I would have the transfusion.

We had been invited to lunch at Tim and Maggie's house in Orpington, so we decided to keep this arrangement before driving to Canterbury to rendezvous with the platelets. I felt a little vulnerable driving round with such a low count. I remember leaping out of the car and saying to them,

"I stand before you - harvested!"

Our meal was dubbed my harvest thanksgiving and included some delicious smoked salmon! Iain and Tim poured over the sailing charts dreaming of trips they would make. We left them around 5.30 and had a slow crawl back to Canterbury.

Dr. Oz was "on call" for the haematologists and came to administer the cover and platelets. He had trained at King's and knew Dr. Mufti and R.D.Lawrence Ward, and spent a long time talking to us about all the staff and patients he had known there. It was 9.30 by the time we got home. It had been another exhausting day so we slept well that night.

We were back on Treble ward at 10.15 to meet Dr. Oz for my blood test. We were getting quite familiar with the system by now and offered to take the blood to the path. lab. ourselves. We waited for the result, speculating what the platelet level might be, after the two bags I had been given the previous evening I was confident it would be reasonably high. We were handed the printout - I couldn't believe it only 14. Dr. Yvonne had already had platelets sent from Tooting, so we took the two bags back to the ward. Fortunately Nurse Moira, who is qualified to give I.V. drugs was on duty. But we had to wait for the cover to take effect and for the platelets to run through my line.

Iain was becoming understandably agitated, saying that I should have had the harvest as an in patient. He left me having the transfusion and went for a walk to cool off. We finally reached home at 2.30. After some lunch and a sleep our spirits were restored and we went to church for a Taize service. I was moved by the singing and felt refreshed and strengthened by the experience. We were introduced to John, our new vicar.

Iain took James for a drink. I was glad to have space and the house to myself. I was beginning to feel that they preferred life without me. I also felt in danger of having, "no fixed abode" and belonging nowhere. The strains and stresses of the last four days were showing.

I needed yet another transfusion on Monday as the platelet count was still only17.

Tuesday was a non hospital day, total freedom. Tom took me to our favourite pub in the country for lunch. His departure for Damascus had been re-scheduled to the next day. It was a lovely sunny, spring day. It felt strange as we drove through the green countryside, knowing we were both to embark on journeys with uncertain destinations, not knowing quite when we would be back there again or what was in store for us. It had been hard letting Jen and her mum help Tom to prepare for this trip, it would have been easy to have been jealous and resentful of their involvement, but I was grateful to them for doing the things I just did not have the stamina to do. I left him at Jen's house with a hug, but no tears. I saw this as ," my golden boy's golden opportunity."

Next day's blood results showed a platelet count of 27, which was sufficient to go another day without transfusion. I saw Dr. Yvonne but as yet there had been no word from King's.

My platelet count was beginning to stabilise, on Wednesday at 27 I had yet another day without needing a transfusion. I wrote in my diary that my hands were very shaky, I had mentioned it to the doctor but she wasn't concerned. Gradually it improved and disappeared.

I went to the solicitors to sign a new will. Iain and I had spent a lot of time discussing this, not sure how best to secure some sort of financial future for the boys should the need arise.

Jen rang to say she had heard from Tom. They had arrived safely, apparently there were lots of bars and lots of work to be done. Jen and I discussed what we could do for his birthday at the end of the month, he was to be 21.

My platelet count was up to 39 on Friday and I did not have to have blood tests over the weekend. A whole week without a transfusion! Dr. Yvonne still had no news from King's.

It was wonderful to have a whole weekend uninterrupted by visits to the hospital. We were able to relax and have a "normal" weekend. We shopped. We watched the service form Bristol Cathedral of the first women to be ordained. We wondered when Helen's ordination would be.

It was Mothering Sunday and we had invited the mums and dad for Sunday lunch. It was very much a joint effort. Mum brought vegetables grown by dad which she had prepared and Olga brought one of her apple pies, of course there were frozen roast potatoes. Chris and James cleared up after the meal. Jen called in at teatime, both mums had made cakes.

We read an article in the paper about bereaved children. It made me realise how important it would be to write to the boys whilst I was in hospital in London.

Tom rang from Damascus, he sounded tired. The work was hard and physical, demolition and bricklaying. They were working from 8am to 6pm, then going back to the hotel for a bath and off to a bar for supper.

It had been a hectic day. Although I had coped physically, emotionally I was feeling very drained.

Drs. Yvonne and Maeve had invited us to a meeting they were to have with a medical rep. about stem cell transplants. We were shown a video of the procedure. It was rather technical and left us feeling even more out of our depths. Dr. Maeve rang King's but Dr. Mufti was doing a ward round and Drs. Alex and Tony were at a conference. She suggested we ring her again next day.

I needed a medical certificate for work so we called in at the Health Centre. Our G.P. asked to see me, he already had a letter from King's in my file but admitted it was all beyond him.

I had lunch with Heather on Tuesday and decided not to take the car. Since I would be resting in between journeys I knew I could make it there and back. Even though it was raining by the time I left I thoroughly enjoyed the fresh air and exercise. I felt that life had a bit of normality once more.

I rang Dr. Maeve. She had spoken to King's. They had told her that lots of my cells had to be looked at, they could only look at 20 a day. She compared it to train spotting. A result had been promised for Thursday. I wrote in my diary,

"What a relief, two more days to play."

I had been disappointed before and I really didn't want to allow myself much space to hope that this treatment would work. Keeping my expectations to a minimum would somehow cushion me from further hurt and disappointment.

On Wednesday my parents came to Whitstable. I met them from the bus and we went to have the usual Ploughman's Lunch at the town church. They had been doing this trip quite regularly for several years since they'd stayed to look after the boys whilst Iain and I had gone away on a holiday.

Lindsey and Lucy came for lunch on Thursday. We walked along the sea front. There was lots of fun and laughter and I really enjoyed their company.

I rang Dr. Maeve. She had heard nothing but promised to ring us in the evening.

We had just finished supper when her call came. Iain answered. She told us it was not good news. I listened on the second phone. It seems there were some abnormal cells in the stem cells; the transplant could not take place. Dr. Mufti had asked for another bone marrow biopsy to be taken on the following Monday. It all seemed rather pointless, if the stem cells weren't clear, what possible chance was there that the bone marrow would be clear? I felt as though we were discussing someone else, this really wasn't happening to me. We were right back where we had been in January. But at least we had the consolation of knowing that we had tried. But I didn't feel particularly consoled. Dr. Maeve arranged to see us on Saturday morning to talk things through.

Chris was anxious to know the results. I wondered if I didn't tell him enough of what was happening. It was hard to know how much to tell him, how much he could take and what , if anything, I should protect him from. We talked about it again over breakfast next morning. I explained once again, that I would relapse and then have more chemotherapy. Then we discussed arrangements for his birthday, also at the end of the month.

I rang my parents to tell them the news. Mum had an appointment at the hospital so we offered her a lift.

We went for a pub lunch and the landlord admired my new "hairdo". We were highly amused by this.

Helen came to supper that evening. We went for a walk by the sea as she had not been there before. After we'd eaten we talked about my funeral and how I was feeling. We helped write her sermon for the Sunday.

On Saturday we kept our appointment with Dr.Maeve. She looked tired. She and Iain went to get some coffee. It was many months later that Iain admitted to me that he had taken that opportunity to ask about my prognosis. Maeve felt that at that time I had about six months to live. She apologised for tucking into her coffee and some fig rolls but announced she was pregnant. The baby was due in October. I didn't even dare to think that far ahead.

The bone marrow biopsy was to see how much the disease had progressed since the last one. It seemed there were still some choices, of a sort, open to us. There was the possibility of a transplant at relapse or I could have injections of interferon, a drug widely used to slow down the spread of cancer cells. I think we talked for at least a couple of hours. Even Maeve agreed that there was very little hope of my bone marrow being free of leukaemic cells.

We went home and tried to do some of the normal things of life. Shopping at Sainsbury's. Cooking. We walked to the video shop. I chose Roald Dahl's, "The Witches". It was brilliant entertainment, even James enjoyed it. I had read it with children in hospital and liked the bit where he warns the children that they can never be sure who is a witch,

"It might even be your lovely teacher reading it to you now."

My favourite part in the video is when all the witches gathered for their convention and removed their wigs. It seems rather ironic that Roald Dahl died of leukaemia.

We spent time in the garden on Sunday. Iain dug out the compost heap and I helped to spread it round the shrubs. I tidied the beds while Iain pruned.

We had lunch at Olga's and joined all the other dog-walkers enjoying the early spring sunshine.

On Monday morning the path. lab. was full. Dr. Maeve appeared with the now familiar orange tray containing all the paraphernalia needed for a bone marrow biopsy. She took a sample which would go to King's, a sample for her use and the rest dripped onto the floor.

I had to have my blood test in the Mountbatten Centre, where I saw John and Sally. By now his chemotherapy had razed his beard. Our next stop was Children's Ward. En route I met the Domestic Supervisor who I'd been so desperate to see during my maniacal first course of treatment. This was mentioned and I felt rather embarrassed at the memory, but he was kind enough to realise that at the time I had been,

"a very frightened lady."

I had coffee with Denise.

I had arranged to meet Jacquie at the Chestfield Barn for some lunch. It was such a glorious spring day that I was determined to walk there. Once across the busy road it is a lovely walk. I enjoyed the fine views across Whitstable and the Swale to Sheppey in one direction and Herne Bay in the other. It was one of those days when it felt really good to be alive. I realised that I had lost a button from my new coat which I was wearing. This gave me the perfect excuse to walk back the same way and decline all offers of a lift. I was relieved to find the button glinting in the sunlight, rather like the lost coin in the Bible.

Next day I walked to the Post Office in Tankerton to post an envelope to Tom. I had collected several birthday cards and packed these with Happy Birthday balloons, an I am 21 badge, streamers and some party poppers. I later learned that this was something of a, mistake, since all his mail was sent in the Diplomatic Bag and it seems that party poppers contain small amounts of explosive. Oooops. How was I to know?

I had a day shopping in Canterbury and met Iain's mum for lunch in Liberties. She was busy buying Easter presents for the family.

Aileen was involved with the Healing Ministry at church and had been wanting me to visit Burrswood Christian healing centre with her. We had discussed this even before I was ill. I had always declined. Although I had been to services at church and had the laying on of hands, I was a little sceptical and wary about it. I agreed to go to Burrswood with Aileen and read up about Dorothy Kerin. At the age of 23 she was thought to be dying but she received healing and survived, dedicating her life to healing others, Burrswood was set up by her for this purpose.

So on Thursday 24th March Aileen and I set out, not expecting anything miraculous to happen. I had an open mind. I remember hoping that maybe we would have the opportunity to talk about death and dying as we drove through the Kentish countryside.

It was crowded when we arrived. We soon learned that Bishop Morris Maddocks, the Archbishop's adviser for the ministry of health and healing, was to preach. We had to sit in the side chapel. It was bathed in sunlight and rather nice to be away from the main congregation. When we reached the point in the service where we were to receive the laying on of hands, I was very conscious that people seemed to be praying for others they knew. I felt rather selfish being there for me. Aileen went ahead, telling the priest about me. When my turn came he asked about Iain and prayed for us both. It was a very powerful moment. I remember crying uncontrollably. Aileen held my hand as I went back to my seat.

We browsed in the bookshop and then had lunch. We met Morris Maddocks and Aileen handed me his book, she had bought it for me and he had signed it,

"In thanksgiving and prayer for Christ's healing touch."

It was warm enough to walk in the gardens and we sat for a long time enjoying the sun and surroundings by the lake.

We left about 3.30, but our homeward journey was dogged by diversions. Aileen later compared these with all the set backs I had encountered before my transplant. We stopped for tea in Biddenden and finally reached home at 6.30.

James came out of the house immediately we pulled into the drive; he had obviously been watching for us.

Chapter 9

"There are lots of messages on the answerphone and I think its good news."

I replayed the messages from Iain and Dr. Maeve.It seemed that the bone marrow biopsy showed that I was now clear of leukaemic cells and King's College Hospital would have a bed for me on Monday. I could now have the bone marrow transplant.

I rang Maeve immediately, she and Yvonne were as amazed as we were. I told them where I had been that day. I rang Aileen to tell her and to thank her for taking me to Burrswood. I didn't know who to ring next. I wanted everyone to know.my good news.

I rang Keith, my parents, Helen, Maggie and Avril. I tried ringing Tom in Damascus, but there was no reply. I wrote to Burrswood to tell them what had happened.

What a day it had been. I was exhausted but too excited to sleep.

We had planned to go away that weekend and saw no reason to change our plans. Particularly as we had no idea how long I would have to stay in hospital in London, or when we might be able to go away again. Iain wanted to visit Ely, for no particular reason, so we had booked into a hotel there.

We left home straight after lunch and arrived in Ely around 3.30. The cathedral looked very imposing, standing majestically in the midst of the fens. But the hotel was uninviting. We consulted our maps and guide books and decided that Norwich was the next nearest cathedral town. With the aid of the mobile phone we were able to book into a hotel close to the cathedral.

The sunshine gave us a pretty drive across fenland country. We marvelled at the richness of the dark soil, so unlike the chalky soil of Kent. We caught glimpses of the Broads with its small boats. We hit Norwich just as it was getting dark. It was rush hour, the traffic was heavy and there were numerous one-way streets to confuse us. We had to ask directions from various people before we found the hotel.

After a rest, we went out to explore the city, having a drink in a large, noisy pub, before supping in an excellent wine bar close to the hotel. Our conversation centred on the events of the last week and our hopes and fears for the future. We were conscious, at one point, of the couple on the next table listening in. It was hardly the conversation most couples have over dinner!

We slept well and relaxed over breakfast with the newspapers, next morning. We visited the cathedral. It was very light inside, being built from stone from Caen in France, just like Canterbury Cathedral. We admired the beautifully vaulted roof with its intricate bosses. We found some amusing misericords in the choir. There were some interesting paintings; I particularly liked Opie's "Presentation at the Temple". Browsing in the gift shop I saw once again a card with the saying of Julian of Norwich which Sue had sent me,

"All will be well........"

We shopped. Iain bought a new mac for himself in Marks and Spencer while I joined other critical and admiring partners on a leather button backed sofa provided for the purpose. It was an enormous store and very crowded and as tiredness began to overtake me I found it all very overwhelming. I was wanting to find a craft shop. Helen had lent me a cross-stitch book which had designs for small monograms which could be mounted to make cards. I thought sewing these would be a good way to help pass the time whilst I was isolated at King's. After much searching we were directed to a shop right behind the hotel. The owner was very helpful, advising me about fabric and threads. I left the shop fully kitted out to begin this new project.

I slept for an hour, before an early supper. We had discovered, much to our delight that there was to be a performance of Bach's "St. Matthew Passion" in the cathedral that evening and had reserved seats. The acoustics and choir were excellent. It was the first time we had heard the entire work and found it very uplifting.

It was Palm Sunday and we attended the morning service in the cathedral. We were encouraged to go into the precincts to wave palms and branches as the choir processed into the church. It was a rather perfunctory occasion compared to the previous year when we had been in Winchester and processed joyfully through the town, singing hymns and gathering people as we passed.

I realised that Easter was fast approaching so we stopped at a supermarket on the way home to buy Easter eggs for the family. We were home by 4pm as I had to get sorted and packed for my next important trip!

Iain took one of the bags I had packed to work with him next morning. I didn't have to be at King's until 4pm so we had agreed I should travel by train and Iain would meet me at Denmark Hill station. As I left home I wondered how long it would be before I saw it all again. The garden was budding with new spring life. I felt apprehensive and excited as I left it all behind.

I had to change trains at Bromley South and had left early enough to shop in Bromley. I had spent my three college years there in the late 1960's and was intrigued to see how it looked now. I had heard a good deal about the Glades shopping centre and stopped in my tracks when I saw that it had been built exactly where I had spent one miserable term in digs with a tyrannical landlady. This was at the time that the awful news of Fred and Rosemary West's atrocities had come to light and I smiled to myself as I wickedly wondered if Mrs. W.-W. might just have been buried under the Glades!

Avril's and Maggie's birthdays were imminent and I really wanted to get something for them. I found a Portmerion vase for Maggie and a crystal ring stand for Avril. I also managed to find a recording of the Bach Choir singing "The St. Matthew Passion", in English, which would be Iain's Easter egg.

I reached Denmark Hill before Iain and waited for him on the platform. When he arrived we had something to eat in the "Phoenix and Firkin". I remember looking out towards the caramel coloured tower block of the hospital which seemed to dominate the view. Trying to convince myself that it wouldn't be too long before I would be able to sit there again with the transplant behind me.

I had been told to report to PP2 at 4pm. It transpired that PP referred to Private Patients. We were expected and I was ushered in to room 11. It was a large, clean, carpeted single room. The large picture windows with their net curtains made it feel very light and airy. There were easy chairs, a table, TV and a telephone. It all felt very palatial and gave me an easy introduction as an in-patient at the hospital. A nurse came to check my temperature, pulse, weight and blood pressure, and to complete all the usual procedures necessary on admission to hospital.

The ward hostess breezed in, wearing a black dress and frilly white pinny to take my order for the four course supper. I had just started my avocado pear and prawns when Dr. Tony arrived. He pointed out that this would not last for long, I'm not sure if he was referring to the style of the food or the fact that as my treatment progressed and I became neutropenic I would not be allowed salads and uncooked foods. He asked us if we understood what the transplant procedure involved. He reminded us of the sore mouth and bottom with which we were all too familiar. There was also a possibility of bleeding into the bladder, rather like cystitis. My wee would be monitored every day and if this became a problem the treatment would have to stop and alternative cytotoxic drugs could be given. I think it was me who brought up the question of dying. Dr. Tony assured us he couldn't recall the last death there had been. We were greatly heartened by this comment. He examined my Hickman line and was quite happy with that.

Iain left about 7pm. I watched some TV and then read for a while. I felt very important when my phone rang. It was Alan. We talked about what was to happen to me and about their recent trip to Turkey. He would be able to visit more often as they lived in north London.

Dr. Lisa, the senior house officer, looked in around 9pm. She examined me and took some blood samples for testing before writing prescriptions for the tablets I was taking on a regular basis.

I slept well and woke to find the sun pouring into my room. It was good to realise that Iain was already on his way to London, albeit to work, but at least he would only be a twenty minute train ride away.

The morning was spent writing letters. Everything had happened so quickly that I had not been able to phone everyone to tell them what was happening. I had tried to contact Tom on several occasions but he had always been out and he of all people should know what was happening.

I was sent for an ECG test. It was good to move from my room and have someone to chat with. The technician remembered going to Canterbury with her mother, to buy fabric from the specialist shops which are now long gone.

Late in the afternoon there was a call to say my room in the Derek Mitchell unit was now ready. As I had already given my supper order to the ward hostess and Iain would be on his way to visit me in PP2 it was decided that I shouldn't move until after supper. Iain arrived at about 5.30, looking less travel worn than when he used to visit me in Canterbury. He helped me to move.

The new room seemed small after the luxury of the private wing, but it was bigger than the one I knew so well in Canterbury. It was clean and comparatively newly decorated. The wide windows made the room light and airy and had pretty flowery curtains There were fine views into Ruskin Park in one direction and the hospital chimney and boiler room in the other. Beyond that, the roofs and office blocks of London could be seen. The hospital was in the flight path to Heathrow airport so I became a keen plane spotter during my stay. Next to my bed was my locker, on which there was an electric fan and my phone, to receive incoming calls. There was an arm chair behind which was a small built in cupboard for my clothes. The en-suite bathroom had a shower, loo and wash basin with a mirror over it. I was horrified at the 11 stone reflection that stared out at me, I'd never seen me with such chunky shoulders before, thankful it wasn't a full length mirror. There was a small TV on a trolley next to the door. Next to this was a fridge in which to store my drinks. There was another sink beside the window.

Dr. Lisa came to tell us that the bone marrow harvest had been booked for 9.30am on Thursday. More tests had been arranged for the next day.

Alan came to visit. He looked tanned and relaxed. He gave me some sketches he had made whilst in Turkey, of places he knew Iain and I had enjoyed on our trip there in 1986. He and Iain left at 7.45, probably for the Phoenix!

I felt lonely, isolated, anxious and homesick and I'm not sure what else.

I set about marking my territory with things from home. The back of the door which led out into the ward was used to display my get well soon cards and later Easter cards were Blu-Tacked to the bathroom door. I put Alan's sketches on the wall and hung up the calendar, ready to have each day crossed off as it passed. This was to be home for the next few weeks.

I settled down to study the literature given to me about the unit and what I could and could not eat. The rules were much stricter than at Canterbury: breakfast cereal and biscuits had to come from individually wrapped packets, any fresh fruit had to be peeled outside my room and then brought in to me. No ice cream was allowed.

The booklet about the unit told me about the nursing staff, there were two nurses on duty, they were RG nurses trained to give IV drugs; no more waiting round for someone qualified to flush my line, no more worries about lines becoming blocked. The consultant's ward rounds were every Monday and Thursday. A senior house officer and registrar would see me every morning. There would be a daily routine of weighing to check for any fluid retention and possible kidney failure. Urine would also be checked daily, as Dr. Tony had already explained. Blood samples would also be analysed. Daily fluid charts had to be kept, I hadn't fully appreciated the importance of flushing the chemotherapy drugs through the system before, I would have to continue to drink at least three litres of liquids every day. The usual observations would be taken four hourly during the day to check for any signs of infection. On Mondays and Thursdays the Hickman line dressings would be changed, using a clear plastic dressing. Mondays were also designated, swab days, I looked forward to having to produce specimens of urine, sputum and stool. My mouth, nose and Hickman line site would also be swabbed! There was advice about mouth care and about isolation procedures. Most of this was familiar stuff by now but it was useful to have it all written down. We sent photocopies to Dr. Yvonne, thinking they might be useful to future leukaemia sufferers in Canterbury. I gradually became accustomed to the continuous humming created by the air filtration system, wondering if I would be able to sleep with it. The nurse had explained to me that for the system to work efficiently all doors and windows had to remain closed. So even though I was not neutropenic my door had to be shut. I could hear none of the noises out in the unit and felt totally isolated.

Wednesday 30th March, Tom's 21st and Chris' 15th birthdays. I wanted to ring them and wish them happy birthday but my phone was for incoming calls only. I felt pretty miserable.

At 8.45 I was taken in a wheelchair, via the aging lift to the X-ray department, an old and crumbling assortment of rooms. My chest and sinuses were X-rayed. I declined the offer of a wheelchair, preferring to walk back to the ward, where my breakfast was waiting for me.

There was a phone message from Jill, the hospital teacher at King's. Colleagues from Margate hospital, with whom I had been in touch, had met her at the annual conference a couple of weeks earlier telling her I was to have treatment there.

I showered in my en-suite bathroom and dressed, still determined to wear my normal clothes.

Another wheelchair arrived , this time to take me for a lung function test. As I waited at the lift John arrived, he was on his way to meet Avril's parents in London. What a joy to see a friendly face and I was very relieved not to have missed him. He came with me and waited whilst the tests were carried out. They were more or less identical with the ones I'd had in Canterbury in January. We walked back through the dingy corridors to my room.

Jill and other colleagues sent me a bouquet of flowers, but the rules about no flowers in the unit are strict so I was allowed a quick look and sniff before donating them to someone on the main ward who had no flowers.

Dr. Anne-Marie, the registrar, came to see me, telling me if all the tests were satisfactory, chemotherapy would start at the weekend.

At 1pm I had yet another wheelchair ride to have a scan. This involved dyes, radio isotopes, cameras and computers. Again I chose to walk back. I was getting to know the geography of the place by now.

Judith, one of the hospital chaplains, came to see me. Helen had been in touch with her. We talked for a while and she promised to bring us Communion next evening.

Jill visited.I had met her at conferences and training days. As we chatted we realised we had quite a lot in common apart from being hospital teachers. Iain came whilst she was still there and immediately offered him a bed, should he need one during my treatment.

Iain quickly adjusted to the new visiting routine. It was a straightforward journey from his office to the hospital and he had discovered a train direct from Denmark Hill to Whitstable. Once home he could stay put. So life was just a little easier for him. We tried to plan the weekend. It would be Easter and Lindsey had invited him to a family lunch on Sunday. She lived in Surrey so he could visit me first. I insisted that he had Saturday "off" and had already arranged for Alan to visit, so there could be no argument that I would be without company.

I had told one of the nurses about it being the boys' birthdays and she let me ring Chris from the nurses station. He had a sore throat and the news from Tom was that he had an upset tummy. Happy birthday boys!

The post card I later received from Tom dated 31st March announced,

"Hello mum.....I'm 21 now and about 2 stone lighter my 21st birthday present from Damascus was gastroenteritis, so I've got to stay in bed for 48 hours and

only eat rice and spuds, drink lots of water and no beer for 2 weeks. You

wanted to know what I'd miss, well the answer is a cup of tea, baked beans and

drinking water out of the tap!"

Being in a small self contained unit meant that I was not woken by the night staff before they went off duty. It was usually the domestic coming in with the breakfast tray that woke me around 8am. No breakfast for me; I was to have a general anaesthetic for the bone marrow harvest. My observations were done, I had to sign the usual pre operation consent forms, I showered and put on one of those delightful operating gowns which are open at the back.

I read for a while, until Dr. Francis, the anaesthetist came. There was some discussion about whether he should use my Hickman line or not to administer the anaesthetic. He seemed reluctant but agreed to use it. Dr. Alex popped in, he would be doing the harvest. He explained that the procedure involved aspirating bone marrow from several sites on the pelvis, in much the same way as happens in a biopsy. One litre of marrow is required for a transplant so it might be necessary to turn me over and take more from my sternum. I remembered reading that Jose Carreras had refused a general anaesthetic as he was anxious about damage to his vocal chords.

It was 10.10am by the clock over the nurses station when I was wheeled away to the theatre. I felt quite calm, excited even. The anaesthetic nurse was annoyed that I was not wearing an identity bracelet, she asked me all sorts of questions to confirm that I was me. I could see Dr. Alex and Dr. Rupin, (one of Dr. Yvonne's proteges) through a glass partition. I really felt I was in safe hands. As I waited the nurse told me enthusiastically that the new theatres were to be in use the following Monday, but I didn't mind missing that. I'd waited long enough for this, I didn't want to wait any longer. I had already been in hospital four days, I had expected to be harvested on the second. Dr. Francis reappeared and syringed a milky white substance into my line, it worked immediately. I don't remember being in the recovery room or going back to the ward.

My next recollection was getting from the trolley back into bed at 12.10. Drs. Tony and Anne-Marie came to tell me that over one litre of marrow had been harvested, chemotherapy would start the day after tomorrow and the bone marrow would be returned the Monday after next. My back was a little sore, but not nearly as painful as I had expected it to be.

I slept off the effects of the anaesthetic until the post arrived, there was a letter from Aileen. I had some sips of water and put my nightie on. Iain rang, anxious to know how things had gone. I was surprised to see Maggie and the children. Their journey from Orpington had been difficult, they felt it was easier to get to Canterbury.

Iain arrived around 4.30, I was very pleased to see him. Judith brought us Communion as she had arranged.

I slept some more after Iain left, until Alan came.

April 1st and Good Friday. Iain and Pip visited. Pip brought me some cross-word puzzle books to help keep me amused.

In the evening I thoroughly enjoyed the Jonathan Miller production of "The St. Matthew Passion". There were no fine choirs as we had heard in Norwich, but a small group of talented young musicians, including, Rachel, Richard and Heike's daughter, who played the violin. Iain had obviously watched it too, as the credits were showing a nurse came in to say he had rung with the message, "Rachel". It was a fitting and peaceful thing to be watching on Good Friday.

Saturday had been designated as Iain's day off. It felt strange knowing he wouldn't be visiting that day, but he needed a rest. We talked on the phone. There was lots of post and I enjoyed displaying the cards on the appropriate doors.

I was getting to know the nurses. Gary was on duty, he was a Glaswegian who, I'm sure, really wanted to be a doctor. He was very earnest and would sit on my bed in an avuncular manner, wondering if there was anything I wanted to ask and was I quite comfortable

I began the cross-stitch "A" for Avril's birthday card. I spent a long time trying to remember how Lesley had shown me to start off without using a knot or leaving an end. Eventually I remembered and became thoroughly engrossed in my work.

After supper Alan came bearing exotic fruit juices and chocolate eggs. We talked about our childhood memories and my illness. The friend of his, Barbara a weaver, had recently died of cancer and Alan told me about her dying and death; how friends had taken her out for drives in the countryside and how she had asked that everyone should take something of her work as a gift after her funeral.

Stuart, the chaplain, brought me Communion early on Easter Sunday morning, long before Iain arrived, bringing goodies from home. The radio-casette player and more tapes, my towelling robe to wear after my shower, the teasmade, tea bags and coffee so I could make my own hot drinks and more bottled water.

Iain left for lunch at Lindsey's and I settled down with my tapestry for the afternoon.

I had quite a collection of Easter cards on the bathroom door. I had received many letters of encouragement from friends. Barbara had quoted 1 Peter 1,

"Praise be to the God and Father of our Lord Jesus Christ, who in his great mercy gave us new birth into a living hope by the resurrection of Jesus Christ."

She went on to say,

"Our living hope is that you will soon be fully restored to health and back in your home with Iain."

A card from an ex-colleague had this message,

"I think of you often and do hope that with spring and new life in the fields and on trees and shrubs, some new and good things will happen for you."

Keith had often compared my illness with the Good Friday experience of Jesus, but I hadn't really understood what he meant. I really didn't see how anything I had experienced could be compared with Jesus' experiences on earth. But now see that his earthly experiences were all about sharing our pain and suffering.

Recently Helen quoted a fellow hospital chaplain, who had likened those wakeful hours on a ward, the night before an operation as a Gethsemane experience.

Some 18 months after my transplant, at a time when I was feeling particularly depressed, I read Sheila Cassidy's book, "Good Friday People". What she says about her suffering while imprisoned in Chile and the way she handled it and God's place in it, summed up just how I was feeling,

"There is a very real danger that, in trying to wrest a spiritual meaning from suffering, we get lured into glorifying it and thereby deny its awfulness. I myself did this for a number of years by trying to over-spiritualise my experience of torture. So convinced was I of my encounter with God in prison that I denied to myself and everyone else what a devastating experience it had been. It was only when, many years later, I had to cope with the psychological aftermath of the experience - what is called the post traumatic stress syndrome - that I was able to acknowledge how wounded I had been. This admission in no way negated the spiritual dimension of the experience: it was indeed a very precious time of closeness to God - but it was also very terrible indeed. Such understanding as I have of my own experience confirms for me how important it is for us to maintain a paschal overview of suffering, holding in the same focus the awful reality of suffering and the mind-blowing truth that God is somehow in it."

So this was a very special Easter for me. A time of great hope for new life.

Easter Monday, day 3 of chemotherapy, busulphan, in tablet form this time. I had become constipated and my bottom was sore. I was becoming shaky again. But as Dr. Mufti pointed out they were all familiar side effects, nothing I'd not had in Canterbury.

Verity and Lindsey came with magazines to read. I realised what a magazine "snob" I was, much preferring expensive publications like, "Goodhousekeeping" and "Vogue" to their cheaper counterparts. Lindsey was very interested to hear about my diary and we talked about my trip to Burrswood and healing.

On Tuesday I wrote a long letter to Tom, but my shakiness was getting worse and every so often I would have an involuntary jerk which sent my pen off the page.

Chris travelled from Herne Bay by train and Iain met him at Denmark Hill station. He coped splendidly with the journey, enjoying the independence and sense of adventure it gave him. It was lovely to see him again.

I woke on Wednesday feeling really rough. Every morning on waking I would open the curtains and watch the workmen below. I remember sitting up, but the next thing I was aware of was that I was lying down again. Nurse Julia came in with my pills, I was drinking my tea when the cup dropped from my hands onto the bed. I was having "absences", a frightening feeling. I had taught several children with this condition and now knew how it felt and realised how difficult it must make the learning situation, to lose consciousness momentarily like this.

I remembered that nurse Gary had given me my pills in two separate containers. One contained the busulphan while the other had eight different pills, one of which was to prevent fitting, which was a side effect of this chemotherapy. Dr. Lisa came to check me out. Confirming that the absences were a reaction to the drugs. I was advised to stay in bed all day. I slept for most of the morning and had no further incidences.

John and Avril visited, having returned her parents to Euston station. I was so pleased to see them. Avril brought me sun flower notelets and John set to cleaning my leaking fridge.

I was feeling weepy when Iain arrived. It seemed as though I saved up all my sadness and worries until he was with me, which seemed very unfair.

After 4 days of tablets I was to have a new drug, cyclophosphamide, which was given through my line, this was the drug which could cause the bladder problems so another drug, Mesna, was given simultaneously to protect the bladder wall.

On Friday I was introduced to Corrine, an ex-patient who was visiting the unit. She was in her mid twenties, with a young family and had undergone two transplants. She had been discharged two weeks earlier. She was terribly shaky - like me - she told me she could not even manage to sign her cheque at the supermarket check-out. She told horrific tales about her cystitis. All in all I did not find this very helpful, terrified that the shakes would continue and dreading all the other things which could go wrong.

Iain had Friday afternoons off work and arrived at lunch time. Chris came during the afternoon and Alan, Maggie and Ben rendezvoused with him in my room. They had arranged to take Chris home with them for a few days.

I was having to go to the loo three or four times during the night, the nurse told me that Victoria, a fellow patient, had been up eleven times the previous night! I was permanently attached to the drip stand so it took some careful manoeuvering, getting out of bed, positioning the drip stand, propelling it to the bathroom door, parking it beside the loo and then repeating the whole performance to get back to bed. I was beginning to feel bored and fed up and I didn't like being permanently tethered again. My weight gain seemed to be more or less permanent now, even though I wasn't eating very much.

The food at King's left a lot to be desired. I remember that the broad beans were very good. I decided to be adventurous and try some of the ethnic menus. A wonderful curry arrived, there was lengthy discussion with the nurse as to whether or not I could eat it, but after several phone calls it was deemed safe. I had several of these meals until my mouth became so sore that eating rice was painful. Instead I indulged in eating by proxy, as I watched cooking programmes on television and collected the recipes from the magazines my visitors brought me, looking forward to cooking them when I went home.

Monday 11th April, a momentous day. My chemotherapy was finished and I could wander freely round the room without dragging the drip stand behind me. The new term had started and Jill came with her packed lunch. She did this several times a week during my stay. She later confessed that she had been very dubious about visiting me initially but had thoroughly enjoyed these lunch time sorties.

The doctors did a ward round, everything seemed to be going to plan.

Mondays were the high spot of the week, when we were all taken in wheelchairs for a routine x-ray. This was the only time I got to see any other patients. I did suggest a mass break out, but no one seemed very interested.

Late in the afternoon my bone marrow was brought in, three golden bags of the stuff. It was the same salmon pink colour liquid as the stem cells. The first bag went up on the drip stand, was connected to my Hickman line and was transfused into my body like all the other bags of blood products and drugs had been.

Iain came in half way through the second bag. I was relieved to see him, I was feeling hot and bothered. The sun was streaming into my room and the preservative in which the bone marrow had been stored made everything smell like the fish stall on Whitstable harbour on a hot summer's day. I could taste it too, which was rather revolting. He had been through so much with me that I felt he had earned his place at my side on transplant day. Now we had to sit back and wait while the bone marrow cells found their way through the circulation into the cavities of my marrow where we hoped and prayed they would start to grow again.

Chris brought mum on the train for a visit. It seemed ages since I had seen her. She would be able to visualise me in my room now. She brought a letter from dad, who really had not felt up to making the journey. She gave me all the news from home and good wishes from all the neighbours. Chris took her to the Phoenix and Firkin for lunch.

There was entertainment in the afternoon when an Air, Sea Rescue helicopter landed in Ruskin Park. I later found out that a kidney had been delivered for transplantation.

On Wednesday I had a visit from Sister Joyce, a Franciscan who worked on a part time basis on the chaplaincy team at the hospital. She asked me how I was coping. I felt able to talk to her about dying and how we seemed to be confronted by a black hole of uncertainty beyond September. I told her of my visit of Burrswood and how I wondered what would have happened if I hadn't gone; would the bone marrow have been clear anyway? She pointed out that we had no way of knowing the answers to questions like these but put it all down to God's wonderful mysteries. We spoke of the pleasures of simple, everyday things. I felt really refreshed being able to have someone like her to talk to in this way. Joyce became another frequent and welcome visitor during my stay.

Next day I noted in my diary that my throat, mouth and bottom were all very sore. I wrote nothing else for a whole week as I was feeling so unwell. Then I made very brief notes to remind myself what had happened.

On Friday Dr. Yvonne rang me, she said my throat sounded very sore - it was! Jill brought me some straws from children's ward to help me with my drinking.

Dr. Rupin did the ward round on Saturday morning and told me I was allowed to feel a bit rough.

I was totally surprised on Monday when Tom appeared. The job had been completed earlier than expected and he was now on leave. He seemed to have gained a new confidence. I felt very proud of him. He bought me a hexagonal wooden trinket box, the lid of which is inlaid with intricate geometric patterns of contrasting wood and mother of pearl. He had travelled on the plane from Damascus with an ex-colleague of Iain's. He talked about all his exploits and adventures.

My mouth and throat were so sore by Tuesday that I was given a morphine derivative, via my line. It made me very sleepy but took away much of the discomfort.

On Thursday I was approached by a research student to take part in a Megakaryocyte Maturation Study. She carefully explained about the study she was carrying out, how she needed samples of blood from people twelve days after transplant, would I like to participate? The morphine was making me very confused and I really hadn't understood what was involved. She had mentioned placental cord blood and I was very anxious about the whole thing. Fortunately Maggie arrived at this point, I knew her legal brain would be able to cope with the paper the student had left for my perusal. Apparently the student only wanted 50mls. of my blood. I was pleased to be able to help medical research.

At this time I realised what a splendid hospital visitor Maggie really was. Somehow I felt I needed to entertain my visitors in some way. She assured me this was not necessary, she could see how uncomfortable it was for me to talk and insisted I lie back and let her do the entertaining.

From my window I had watched the trees change from their spring to summer colours. People in the park were no longer wearing coats but lighter summer clothes. Games of football had changed to tennis and cricket. My Laura Ashley catalogue had arrived and I picked out a cotton skirt and top, knowing a new outfit would revive my flagging spirits.

Dr Tony did a ward round on Friday. It seemed my white cell count had gone from .5 to 1.8, really encouraging news, at last there were signs of regeneration. He suggested to my delight that I might be allowed home the following week. Dr. Mufti confirmed this on his Monday ward round. I had been prepared for a really long stay and hadn't thought much about when it would end, just living form day to day.

Being Monday I had my usual ride to x-ray. It was late in the afternoon and as I sat waiting my turn the administrative staff were packing up and going home at the end of their working day. How I envied them their smart suits, high heeled shoes and beautifully coiffed hair. I wondered where home might be for them, imagining them dashing off to shop and cook for partners and families. My home and family seemed a million miles away.

Iain came and found me in x-ray. I sent him to buy some jelly babies and fruit pastilles thinking they might sooth my sore mouth and take away the horrible taste I had in it.

On Tuesday Doreen and Doug came to see me, bringing an enormous fabric sunflower to add to my collection. As always she had me laughing but I was finding visitors very tiring. Jane came in the evening and stayed a little while. I was anxious about her going home on her own after dark on the train.

I was feeling tired and sorry for myself. My throat and mouth were a little better. But not my bottom and now my vagina was sore too. I seemed to have different creams to apply everywhere.

On Tuesday Tom hired a car and brought mum to visit.

The switch on my line was beginning to play up again. I recognised the symptoms this time and the nurse phoned the Mountbatten Centre for a replacement. It arrived by return post with detailed instructions from Nurse Jane about fitting it.

On his Thursday ward round Dr. Mufti suggested that I might be transferred back to the Kent and Canterbury hospital to continue my antibiotics and await further regeneration. It sounded a splendid idea to us!

Alan visited. They had been looking at houses around Canterbury to replace the house that had been lost in the fire at Teynham. They had offered on a coastguard cottage overlooking Dover harbour, which they had all liked.

On Friday the registrar rang Canterbury to finalise my transfer. I would need a further blood transfusion on Saturday but could leave at 6pm when the antibiotics would be finished for the day. I could spend Saturday night at home and report to the Kent and Canterbury on Sunday morning.

Dr. Tony came to say good-bye.

I couldn't sleep that night, I was far too excited at the prospect of going home.

Saturday 30th April. I was awake early, I showered, dressed and packed.

Tom and Chris visited and took some of my belongings home.

Iain arrived in the middle of the afternoon. He was agitated to find that the blood transfusion had not started, I don't think the blood had even arrived from Tooting at that stage. We chatted to the nurses as they hurried the blood and antibiotic through my line, but it was 9pm before we were able to leave. We said our good-byes to the staff who had looked after me so well. It felt wonderful to be walking through the doors of the unit for the last time. I was determined to walk to the car and enjoy the fresh air of which I had been deprived for so long. It was a warm, balmy evening. The south London streets were crowded with Saturday night revellers as we drove through. It was late by the time we reached home, but the garden smelt wonderful. I didn't sleep well, my night time dose of tablets seemed to be stuck on my chest and there was a cold draught from the window on my bald head. The worst thing was the ringing in the silence after living for five weeks with the noise of an air filtration unit.

Chapter 10

It was lovely to wake to the sound of bird song, it was a beautiful, sunny morning. I looked out to see that the flowers and hedges had burst into summer life in my absence. I enjoyed pegging out the washing and ironing myself a summer skirt to wear. I had a soak in the bath and quickly re-packed my bag.

The wards at Kent and Canterbury hospital had been reorganised since my last stay and Treble Ward had moved to Northbourne Ward. Nurse Moira was pleased to see us and showed me to my room. There were five side wards set apart from the main ward, with their own loo and shower. I was to have what was affectionately known as the "broom cupboard". There was just enough space for my bed, locker and chair. It had been converted from two cupboards. The two small windows looked out onto the roof and another wall. I didn't care, they could have put my bed in the sluice, I was just happy to be back in Canterbury, near friends, family and home. I could have the door open and was free to wander about.

The sun was shining, windows were open and I could hear the singing from the chapel just along the corridor. After the service we went to the staff restaurant for lunch with Helen.

Mum and dad came in the afternoon, bringing me a bunch of roses, the first flowers I had been allowed for several weeks. They looked so pretty on my window sill.

Early May Bank Holiday Monday. I woke up feeling good and enjoyed a shower. I settled down to a sewing morning. My tapestry was now 2/3rds finished and I somehow felt that its completion would coincide with going home, so I was anxious to get on with it. I was also busy with a cross-stitch card which I had designed to give to Helen for her ordination. Fortunately I could see down the corridor from my room and hide it before she reached me.

Tim and Maggie came. Chris joined them too and it was all rather a squash in my little room, so we walked down the drive and sat on a seat. Chris told me all about his go-carting the previous evening with Tom, but they had both been very shocked by the news of Ayerton Senna's death.

We were surprised when Dr. Maeve appeared, being a bank holiday we hadn't expected to see a doctor. She was really encouraging about the way things were progressing, but warned me that I would have to take things very slowly. There would be a temptation to over do things as though making up for time that had been lost to me. She warned me I would have to stay out of the sun for two years as the treatment could result in a permanently disfiguring pigmentation of the skin. It was wonderful to hear her talking about two years, for so long now we had not thought further ahead than two months.

Denise resumed her daily visits.

Nurse Jane looked in saying,

"I must go and tell Mountbatten Centre you are here."

Sister Karen asked if she could use me for a case study in her oncology course. I was really beginning to feel as though I were a celebrity, everyone was so pleased to see me.

My temperature was not settled and it was decided that my Hickman line should be removed, as it may have been causing an infection, although none had shown up on swabs or cultures that had already been taken. It was late on Thursday evening by the time the senior house officer had time to do this. He admitted it was the first line he had removed which made me apprehensive, but I knew that Dr. Yvonne had spoken to him on the phone and was keeping in touch with what was happening. Valium was duly administered via my line and soon reached my brain, taking away any unpleasant sensations, a local anaesthetic was also given. It felt as though the doctor was unpicking some sewing which had gone wrong as he attempted to remove the line from my chest. I felt nothing and it was soon out and the tip was sent to the path. lab. to be cultured. We later heard that nothing had been found, making its removal rather unnecessary. I had two stitches put in and settled down for the night.

My temperature was still up next morning, but Dr. Sarah assured me it might take 24 hours for it to settle. I was getting impatient to go home. Dr. Mufti had said I would only need to stay a couple of days and now a week had passed. But I would not be allowed to go until my temperature settled.

I was still needing intravenous antibiotics so a venflom was put into my foot. This was quite a novelty as they are usually put into the arm, but it did mean I could sew more easily.

At this time I saw Dr. Yvonne and Nurse Jane showing George, Maureen's husband around the ward. Money had been donated in her memory and he was being shown where some of it would be spent. It made me feel rather sad to see him and I even began to feel a little guilty. Why should I be alive and she be dead? A few days later I met her god-daughter who was working as a phlebotamist. I was able to tell her how I had felt and she was very positive and re-assuring, encouraging me not to feel sad or guilty. I often think of Maureen and Sharon, my leukaemic sisters, and somehow feel a warmth, that they are encouraging me and that I represent them in my efforts.

I had decided to use the second wig, which I'd put away. It was a lighter colour than the original, but since I'd not worn that for a while I didn't think people would notice. My hairdresser came to the hospital and trimmed the new wig teasing it into shape. I was delighted with the result, not realising how tired the first one had looked.

Sunday 8th May, Helen's ordination. This had been something of a goal for me all through my time at King's. Helen had invited us but we had no way of knowing if I would be well enough to attend. I had my newly coiffed wig, Jen's mum had ironed my "posh frock", Lesley had pressed and mounted the cross-stitch card, mum had been to buy a pottery Canterbury cross as a gift, my antibiotics had been re-timed, blood had been taken early for testing and Dr. Yvonne had agreed that I could be released for the day. Dr. Maggie had also been invited so I would have a doctor by my side!

It was a beautiful, warm, sunny May morning. We saw John and Avril in the queue which was forming in the precincts. As we entered the nave my eye was caught by the banner behind the altar, on it were the words of Julian of Norwich,

"All shall be well, and all shall be well, and all manner of things shall be well."

It was the feast day of Julian. The seats were filling quickly and I recognised many friends from church who I had not seen for so long. There were several people I recognised from the hospital too.

The procession of deacons stopped beside us. I spotted Sue, she smiled and looked absolutely radiant. Helen looked terrified, but later explained that she was just overwhelmed with emotion. Elizabeth and Julia, both from Whitstable were there too. George Carey the Archbishop followed them, wearing a new cope and mitre in shades of blue and sparkling silver. It felt an amazingly happy occasion for the ordinands and congregation alike and for us it was something of a thanksgiving for the new hope and life I now had.

We had a good view of the pulpit as the Archbishop preached. He reminded us we were all there because of love. He asked that we support those being ordained and pray for those who opposed this ordination of women priests. Half the women were ordained at the nave altar and then the procession continued into the quire where the rest were ordained.

Communion followed, as we waited I remember looking through the small doorway leading into the quire. I could see the Archbishop on his seat and the beautiful chandelier glinting above him as silhouetted figures moved about.

After the service as the new priests processed back through the nave, spontaneous applause rang around the lofty building, they were all smiles on this historic occasion.

Outside a group of Catholic women hoisted a banner proclaiming, "Catholic women next!".

We had been invited to lunch at Helen's house, where we met friends she had talked about and enjoyed a splendid lunch. It seemed like the first real food I'd seen in a long time. Dr. Maggie reminded me to steer clear of the glorious salads as my white count was still quite low.

I had to be back at the hospital by 4pm for my next dose of antibiotics. Everyone was keen to hear all that had happened during the day.

Chris came to visit in the evening. I was specially pleased to see him as I had spent a very frustrating half an hour trying to work my radio. He left his "Walkman" with me so I could listen to some tapes. I needed something to soothe me after such an exciting day.

I was still needing blood and platelet transfusions. This was not quite as straightforward now my line had been removed. The venfloms only worked for a few days before becoming blocked. It took the doctor three attempts to get the next one in place, leaving me feeling, "punctured and out of control."

My temperature was still up and down. I began to curse the accuracy of the new digital Ivac thermometers we had asked the League of Friends to buy. Nurse Michael suggested using the conventional mercury thermometer and sure enough I had a normal reading.

Helen spent her coffee break with me on Tuesday morning. She looked wonderful and said she felt, "complete". We talked enthusiastically about the service. I asked her how one should receive Communion. In the past I had always kept my head bowed, but over the months of receiving bed and house Communions this did not feel appropriate. The bowed head seemed to show feelings of sin and shame, now I felt I wanted to show my feelings of triumph and thanksgiving and lift my head high. She agreed with me.

Wednesday 11th May, one month from transplant. I woke early feeling refreshed. I read for a while and did some more to my tapestry. After breakfast I had a shower, Dr. Yvonne arrived whilst I was still in the shower, so I hurried out. My blood levels were all going up, she sounded my chest, checked my backside and asked me if I would like to go home. What a question!

I would have to check my temperature regularly and ring the ward if it went above 37.5. I would still need to have blood checks and platelet transfusions as an outpatient.

I rang Iain at his office to tell him the good news, packed and waited for him to arrive. It was 4 o'clock by the time he reached the hospital. We met Lesley on the stairs and asked her to take our photograph as we left the hospital, thinking it would be for the last time. We hadn't realised the film was already finished, but as it turned out we weren't leaving for the last time!

My diary stops at this point, so my writing relies on my memories prompted by some brief entries in Iain's pocket diary.

Thursday 12th May, Ascension Day. We went to a Eucharist service in the hospital chapel, where Helen was celebrating her first Communion as a priest, being able to consecrate the bread and wine for the first time herself.

I was thrilled that she had asked me to read a lesson during the service. The chapel was unusually full by the time we arrived. I felt very nervous as I stood to read, I was still very shaky, in fact I shook so much that Iain thought I was going to drop the Bible. My voice was strong and steady and I'd practised reading the passage several times, so my delivery was fine as I read the passage from Daniel.

I was still needing platelet transfusions and went to the Mountbatten Centre for these. I met with John and Sally again, he had lost weight and was having trouble walking, but was battling on with his treatment.

During the week that followed blood began to appear in my urine and I was having to go to the loo frequently. I had to plan my journey from home to the hospital via several loos and came to know where all the loos in the hospital are! The cystitis became so bad that I was re-admitted to Northbourne Ward on Friday 20th May. I had a bed on the main ward. Nurse Bunty admitted to having a nightmare about me; she was so shocked at the sight of what looked like neat blood I was passing every five to ten minutes. It was all very tiring but I don't remember it being painful.

My red count was falling and I needed another blood transfusion. My arms were becoming very bruised from having so many venfloms put in and taken out so frequently. On the Monday it was decided another Hickman line should be fitted. This was done in the x-ray department. A dye was injected to show the best position for the line. The usual doses of valium and local anaesthetic were given but I don't remember much about the procedure, apart from needing a bed-pan half way through and the surgeons discreetly disappearing whilst I used it. On my return to the ward my bed was moved to a side room. I was sorry to leave the friends I had made but it was nice to have the privacy and one of the best views from the entire hospital. Overlooking the main drive and out to the countryside beyond. There was always plenty to see with people coming and going all day.

Tuesday was very reminiscent of the first line being fitted, my platelet count was low and I bled from the site and needed transfusing again. I was terrified it would bleed as it had then, but after one bag of platelets the bleeding stopped. I was feeling so tense that my body ached. Nurse Moira arranged for me to have an aromatherapy session with Abi. After an hour with her I was completely relaxed.

The cystitis was easing so I was allowed home for the weekend. We went to the 8 o'clock Communion service at church, my bladder held out just long enough for this. I had to go back to Northbourne Ward in the evening for yet more platelets but was allowed home again.

It was the late May Bank holiday and I had to be back at the hospital for midday for my blood test. Nurse Moira had left a note on my bed telling me that John was in the next room. He was very poorly.

Tuesday 31st. May, mum's birthday. I had made her a cross-stitch card and arranged to have a flower basket delivered to my room from the hospital florist at 5pm, knowing that mum and dad and Chris would all be visiting. Iain had bought a birthday cake from Tesco's and Nurse Moira laid on cups of tea for us, so we were able to have a little party.

The cystitis slowly improved, but I would not be discharged until it was completely cleared. Some nights I was allowed home if I was not needing a blood or platelet transfusion.

My tapestry was now complete and I made a start on the cross-stitch kit my colleagues had sent me the previous September. It was a design with pink and purple anemones. I was able to work at this later when I had to attend as an outpatient for platelet transfusions. It took the agony out of all the waiting around that was involved between having blood taken, awaiting the result, platelets arriving and running through my line.

Friday 3rd. June was a lovely sunny morning. I'd been allowed home for the night and drove myself into the hospital. A beautiful "Peace" rose caught my eye as I got into the car. I stopped to pick it to give to John. I went straight to his room only to find someone else there. He had died at midnight.

I saw Dr. Yvonne in path. lab. She wanted to see me on the ward to examine me and if everything was in order I would be discharged.

I left for home at 5pm. FREEDOM!

I had to attend Mountbatten Centre, three times during the following week for platelet transfusions. In between life was beginning to take on some normality. I gradually did a little more each day, although I was still having a sleep in the afternoon.

Twice daily I was taking my temperature for early signs of infection and had to be re-admitted again on Thursday 16th. June with an infection that needed treating with intravenous antibiotic. This was a terrible blow, the boat was due to be delivered three days later. We had asked specially for that date as it would be exactly one year from my being diagnosed, now I was to miss it.

Tim, Maggie and their children had arranged to be there so Iain had lots of supporters, he was very excited. After its arrival and rigging were complete Tim and Maggie came to see me, having saved some of the launching champagne for me. While they were there I was told I could go out for the evening. So they took me home and we surprised Iain. He drove me to see "Mince Pies" and then had a pub supper.

Following a week of antibiotics I was discharged once more.

Two days later I developed an awful tummy ache. I ignored it hoping it would go away. There was no diarrhoea or vomiting and I hadn't eaten anything unusual.

We met Karl for his birthday lunch in Canterbury. I still had tummy ache.

Next day, Sunday, we took "Mince Pies" for her first trip out. I still had awful tummy ache.

I was due to see Drs. Yvonne and Maeve on Monday at 2pm. I felt so miserable and uncomfortable in the morning that I rang Iain at work and asked him to come home. He drove me to the hospital to keep my appointment. The doctors were very positive and encouraging. Maeve pointed out that I had been overdoing things. Yes I'd kitted out the boat with cushions and covers, sleeping bags, pots, pans and a picnic set. She'd warned me about this feeling of making up for lost time. But I hadn't felt that; it was more a feeling of not knowing how much time was left to me, needing to get things done quickly just in case it all went wrong and I relapsed. I was in tears, my tummy ached and I really felt as though I had lost my grip on things. They sent me home to rest.

I spent Tuesday in bed.

On Wednesday I was re-admitted to Mountbatten Centre with gastritis. I slept all the time. I was allowed home late on Friday, promising to return if my temperature went up.

It did. At 10pm. on Saturday. I was re-admitted to Northbourne

Ward, via Accident and Emergency, at 1am. Sunday 3rd. July. I was given more antibiotics.

My temperature did not settle so stronger antibiotic were given and I immediately developed chronic diarrhoea.

During the following week I had my heart checked and my bones scanned. Arrangements were made for me to see the gynaecologist, to investigate the cause of my tummy ache and temperature. All the usual swabs and cultures were taken. Nothing un-toward was found.

Dr. Maggie came to tell us she had passed her medical exams, she was very excited. She called in on Sunday lunch-time with a medicine bottle, bearing a hospital pharmacy label with the magic words, "sweet sherry", printed on it. She disappeared to find some glasses, came back and shut the door and the three of us drank to her future career. I slept for two hours after lunch, and awoke to find a notice on the door saying, "Do not disturb zzzzzzzzzzzzz."

My temperature gradually settled and I was finally discharged on Friday 15th July. One year and one month after I had first been admitted and diagnosed with leukaemia.

Postscript

Iain and I have had much discussion about where I should end my story. I feel there should be some sort of postscript along the lines of life after transplant, telling what I have achieved since then.

When I came home I was weak. The diarrhoea persisted through the summer and autumn. Various tests were carried out. I had to collect all my bowel movements over a three day period. Quite the most disgusting thing I've ever had to do. This showed that I was not absorbing fats properly, this was causing the frequent loose motions which were pale in colour,offensive to smell, bulky and difficult to flush away. Excessive wind and loud, gurglings rather like water running into a drain were also a problem. I was referred to the gastroligist who arranged for me to have a barium meal test, endoscopy and colonoscopy examinations.

There came a point towards the end of October when my weight was down to 8 stone and I was in such pain that we really did not know who to turn to for help. Obviously it wasn't a problem for the haematologists. Iain took the day off work and rang our G.P.. He arrived in minutes, examined me and spoke on the telephone with the gastrologist. Steroids were prescribed and these immediately relieved the pain.

I kept a record of my bowel movements and realised I was having five or six every day. I saw the gastrologist at the outpatient clinic. His diagnosis was that I was suffering with Crohn's disease. He wasn't too sure of the cause but thought it might be the result of prolonged chemotherapy or antibiotics. He pointed out that not many people with acute myeloid leukaemia made it this far so research was limited. When I saw him just before Christmas he suggested I take a pancreatic enzyme, thinking it might help my condition. It did and my Crohn's is now largely under control and I have returned to my usual weight.

I gradually built myself up and regained my strength. I used to go for walks and go a little further each day. There was a time when I couldn't manage the mile and a half into Whitstable or Tankerton and back again without a rest. This was how I came to know all the local tea shops, coffee bars and "greasy spoons". I thoroughly enjoyed sampling their wares and found them a marvellous place for people watching.

In July the Three Tenors Concert was televised from America. We had enjoyed the first one, but this was particularly poignant. After it I was moved to write a long letter to Jose Carreras, telling him how much we had enjoyed the concert and all that had happened to me, I concluded that letter by saying,

"We watched the Three Tenors Concert with tears in our eyes. I wondered......

"Will I be here for the 1998 concert - you made it - why shouldn't I?""

He sent me an autographed photograph and good luck message. I had hoped for a couple of concert tickets, particularly as I'd mentioned what an opera buff Dr. Yvonne is!

In August I organised a Luncheon for my Loyal Ladies, to say thank you to those who had been so supportive throughout my illness-

Helen who had given me spiritual support,

Denise who had visited everyday I had been in hospital in Canterbury,

Maggie who had written some wonderful letters and proved to be such an outstanding hospital visitor,

Jean and Janet who had both written to me every week,

Liz. and Barbara, friends from church who had helped us both,

Jenny and Marion who had visited, written, cooked and gardened for us,

Kim who had kept house in my absence, and

Avril who had inspired me with the sunflowers,

sadly Aileen and Jane were unable to join us.

At the end of August we took Chris and James to Center Parcs, in Sherwood Forest, for a long weekend. It was a last minute booking and we were given a villa near the centre of the village so I would not have to far too walk. It was good being together again and the boys made full use of all the facilities. My finger nails began shedding at this time; yet another side effect of the harsh chemotherapy drugs I had been given during the transplant procedure. It felt rather like a snake loosing its skin. Each nail slowly lifted from the quick, to reveal a perfect, new nail beneath.

September 5th was mum and dad's Golden Wedding Anniversary. Alan and I managed to organise a family party in the tea rooms on Wye Downs. It was a cold, blustery day so we were not able to walk but our table was by the window looking out across the Kent countryside.

At the beginning of October Iain and I put the car on the train and spent ten days in Scotland. First visiting Edinburgh and then renting a cottage in the Angus Glens. The autumn colours were magnificent. The cottage was isolated, with sheep, cattle and rabbits our nearest neighbours. Iain found it too remote, but I loved the peace and tranquillity and there were beautiful views along the glen. We experienced a blizzard as we drove through Balmoral and welcomed the Haggis, neaps and tatties on the menu in Ballater. We visited more family graves in Old Meldrum, north west of Aberdeen.

When we arrived back at King's Cross everything looked so dingy. I felt completely overwhelmed and burst in to tears as we drove up the ramp out of the station. We were back in the real world and I was terrified, not knowing quite what lay ahead.

In December we visited Burrswood to say "thank you" there.

There was a special family party at the London Hilton to celebrate Lucy's 21st birthday. (Iain's niece). I danced till midnight - just like everyone else!

We attended the christening of Dr. Maeve's new daughter, Fiona in the hospital chapel.

Jen organised a surprise party for Tom's 22nd birthday in March.

Next day Iain and I went to the Bach choir's performance of "St. Matthew Passion" at the Festival Hall. Tim sings with the choir and treated us to front row seats. It was beautiful. This is quite an occasion, beginning in the morning, during the break everyone has a picnic lunch on the Embankment. It was a warm sunny day and the London Marathon was happening at the same time. Gradually runners, singers and their respective audiences intermingled on both sides of the river. It all felt very special.

Around this time I remember thinking that I would quite like to go back to work. I was due to see Dr. Yvonne for a blood check. I met Sister Jill and Lesley from Children's Ward as I walked up the hospital drive. I told them my thoughts, but they were not enthusiastic, encouraging me instead to stay home and enjoy the summer. Dr. Yvonne expressed her misgivings about my returning to teach in the hospital with sick and terminally ill children. I was a little thrown by all this. I suppose I'd always assumed life would continue in much the same way as it had before the illness.

I think this realisation and acceptance that life could not be the same again contributed to the depression which followed and lasted through much of the summer. I wondered where life was leading. I had lost my direction and sense of purpose and self worth. I wondered what all the fight and struggle had been for. I would escape by sleeping, but felt scared and panicky when I woke up. I reached a stage when I felt that relapse would have been a relief. This all seemed so ungrateful after the care and devotion everyone had shown me. Fortunately I was able to tell Dr. Maeve how I was feeling when I went for a blood check. Arrangements were made for me to see a counsellor. In talking to her and transcribing my diary I was able to work through my feelings, mourn the life I had lost and start to build a new life for myself.

I remember driving through the woods to Canterbury for my next blood check and wondering just what I could do if I didn't teach.

Aromatherapy!

I could train to be an aromatherapist. I loved the exciting smells and knew I had to do something with people. I phoned around for details of courses. I discussed it with family and friends - the reception was mixed. Abi was absolutely delighted and fully supported my decision. This has given me the sense of purpose and direction my life was lacking. I have commandeered Tom's bedroom and he has dubbed me "Madam Spankey"! When I checked with Helen before writing about Nicodemus she told me he had been at the foot of the cross when Jesus was crucified and probably helped anoint his body and he would have used some of the oils I will use in my aromatherapy.

Sue and Dave invited us to spend the early May Bank holiday weekend with them on their power boat. We gladly accepted but it did pose one problem. How would I cope with a wig whilst travelling at 30 knots in the Channel? My hair was growing back slowly, albeit thin, grey and wispy, but it was there. I no longer wore my wig around the house and gradually more and more people had seen me without it. I had been wondering when I should stop wearing it completely. This must be it. I took myself off to see my loyal hairdresser, wearing my wig and walked home with it in a carrier bag. It felt good feeling the wind in my hair once more.

We had an amazing weekend. It felt like the Mediterranean it was so hot and sunny. David took us on a tour of Portsmouth Harbour while we sipped champagne. Then we powered our way to Weymouth, stopping for lunch at Lulworth Cove.

Dr. Maeve had warned me about keeping out of the sun, so we decided to holiday in England. The Lake District seemed a safe bet - it always rains there. The sun shone the entire week! We walked places as it was less frustrating than constantly reversing the car along the narrow country lanes to let other vehicles pass. Fortunately I had packed my Damon Hill cap the boys had bought me, with trousers and long sleeved shirts I managed to keep myself well covered. Someone told me that the Lake District is the gateway to heaven. As I sat, at 1300 feet on Tilberthwaite Fell, I think I was in heaven. The view was breathtaking, looking across the fells to lakes, with steep, forested slopes and everything so gloriously green. I remember the feeling of pride having accomplished the walk, the whole world seemed to be in front of me. My battle with cancer had all been worthwhile, this is what I had fought for.

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lunch at Lulworth Cove.

Dr. Maeve had warned me about keeping out of the sun, so we decided to holiday in England. The Lake District seemed a safe bet - it always rains there. The sun €

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my story

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