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One Carer's Account of Living with her Husband's Leukaemia Diagnosis
One Carer's Account of Living with her Husband's Leukaemia Diagnosis
One Carer's Account of Living with her Husband's Leukaemia Diagnosis
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One Carer's Account of Living with her Husband's Leukaemia Diagnosis

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In 2011, Peter Rogers was diagnosed with a rare form of leukaemia. For a fit and active man, recently retired, the news was devastating. Written by his wife, Jennifer, this is the story of Peter’s battle with the disease, expressing the highs and crushing lows of the last three years of his life. Through chemotherapy, blood transfusions and bone marrow transplants, Peter kept meticulous notes: recording both the details of his treatment and his appreciation of the care he received from doctors and other dedicated healthcare staff. But this book is also a testament to the unfailing love and care of his wife, Jennifer, whose selfless devotion shines through her account – not only of coping with Peter’s illness, but poignant memories of their life together, family gatherings and happy holidays with friends. Many will relate to this heart-rending but all-too-common account of love and loss.

LanguageEnglish
Release dateFeb 11, 2018
ISBN9781370231898
One Carer's Account of Living with her Husband's Leukaemia Diagnosis
Author

Jennifer Rogers

Jennifer Rogers is a passionate historian who dedicates her time to the preservation of local history through her volunteer efforts with several organizations. She was appointed and continues to serve as an active board member of the Upper Southampton Historical Advisory Board, as well as a board member of the Craven Hall Historical Society. As a graduate of Pennsylvania State University, Jennifer Rogers obtained her Bachelor of Arts degree in American studies, with a minor in English. While studying at Penn State, Jennifer interned at the Spruance Library at Mercer Museum, where she discovered and transcribed a Civil War soldier's diary, completed two undergraduate research projects and also presented her research and transcriptions of the Bucks County Civil War soldier's diary at the Pennsylvania Historical Association's Annual Conference. For more than two years, she was the collections manager and preservation and communications associate for the SS United States Conservancy.

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    One Carer's Account of Living with her Husband's Leukaemia Diagnosis - Jennifer Rogers

    Preface

    When Peter was diagnosed with Leukaemia on 15th August, 2011, I knew absolutely nothing about that cancer. I had had no idea that this was about to happen to Peter. I had assumed that his gout and tiredness and lack of energy were due to getting older.

    It took a long while for the shock of our new life to settle down and for us to adapt to a we must get on with this approach to life. The more information Peter found for us to read, relating to his illness, the more confused I became, simply because I was learning that, no matter what new fact I learnt about Leukaemia, there were so many variables. Each case is so individual and dependent on many different factors, so that I learnt never to presume this or that would happen. The most important fact that remained in my head throughout all of Peter’s subsequent treatment was something his haematology consultant, Dr Hamilton said to us after his CMML (Chronic Myelomonocytic Leukaemia) had transformed into Acute Myeloid Leukaemia, which was that the CMML would always stay, irrespective of whatever treatment he had.

    It felt to me that we were now walking along a tight-rope, never certain at what point we would fall off. I say we, for as far as I was concerned, Peter and I were in this together. From the first moment he was diagnosed, during the nights of lying in the quiet darkness, occasionally talking about our thoughts, feelings, family, treatments, we would always hold each other’s hand.

    All along this new direction we were now travelling, I never knew what to expect. I read the facts about each course of chemotherapy Peter had, and learnt about the possible outcomes, but none of the team of doctors or nurses, or Peter himself, could predict how it would actually all turn out. As his progress along this route advanced, the uncertainty of it all actually increased. I learnt to live one day at a time and not to plan too far ahead. Infection was always to be feared, and prevented if at all possible.

    One of the reasons I felt I needed to record this period of our life in detail, was with the thought that it might give another patient or more especially another ‘carer’—for that was what I was officially labelled—some idea of what to expect may or may not happen. Added to that, I would dearly love to play a part in promoting stem cell donation. Apart from the occasional appeal for donors we see from time to time on the television, I have a feeling it is still relatively unknown. Receiving a near as possible perfect stem cell donation is key to a successful transplant. Considering how individual we all are as human beings, that must, I presume, be the same for our bloods (I am including the many components of blood here). So, the more people donating stem cells, the better the selection for the recipients.

    We were extraordinarily lucky to be living so close to the Royal Devon and Exeter hospital which has an outstanding haematology department and, in my opinion, an outstanding staff to include not only the doctors and nurses, consultants, specialist nurses, auxiliaries, house-keepers, catering, and cleaners (or are they included in house-keeping?). Plus, I must mention specifically the Exeter Leukaemia Fund charity (ELF) and Friends of the Oncology and Radiotherapy Centre, Exeter (FORCE). These two charities are also outstanding, in their dedication to helping both the patients and their carers. When Peter and I moved to Bristol for his bone marrow transplant, I missed both ELF and FORCE tremendously, which also taught me how essential their work is.

    My time in Bristol was very lonely and extremely stressful. Again, I was very lucky that our fantastic family and friends were always there for us, but there were many hours when they could not possibly be physically with me. It would be my dearest wish, to be able in some way to make life a little more comfortable for the carers of the adult bone marrow transplant patients in Bristol. I cannot assume what it is like in the Plymouth BMT unit.

    I think I ought to point out that the techniques that are used to obtain bone marrow or peripheral blood cells from patients and donors are essentially the same, although there are subtle differences. The cells for a transplant are obtained from the bone marrow or the blood. These are called stem cells. The process used to collect stem cells is called harvesting. There are two different ways that stem cells can be harvested: bone marrow harvest or peripheral blood stem cell harvest.

    Before Peter left Exeter for his transplant in Bristol, I was able to talk to Rachel, a haematology nurse working on Yarty ward. She had spent six months working in the BMT unit in Bristol. She was willing and eager to pass on any information to me regarding the carer’s responsibilities, which I found invaluable. But she had little knowledge about the living accommodation as her work had been on the ward with the patients. At least I had been able to talk to someone about what might lie ahead of us both.

    Phase 1

    The room was very dark and silent. The windows framed a lighter rectangle in the darkness, the moon was shining outside. Peter was very still, breathing quietly, no sign of restlessness or discomfort. I can remember feeling very hot and then realising it was because Peter’s body felt like it was burning beside me. He felt somehow hotter than a fever heat, and I had felt those when the children were young. Very slowly, I gently started to inch myself further away from his burning, sweating body trying not to disturb him and eventually reached a cooler place to sleep. That was not like me at all. Normally I am drawn to heat like a moth to a flame. Next day, Peter appeared to be quite well, no apparent sign of an approaching cold or any other illness. So, I gradually forgot all about the whole episode. I didn’t realise it then, but I was to learn this was not a good sign.

    Peter and I lived in Devon, a beautiful county with no bad views anywhere. There are many hills and vales and roads, or rather lanes, which in the middle of summer remind me of what it must be like to drive around in a maze. The Devon banks along the edges of the lanes with uncut hedges and the wild flowers in full bloom made it more difficult to see the incredible views. But we loved it. We loved being so close to several different beaches. We loved being so near to the city of Exeter and all that it had to offer, the cinemas, restaurants, a newish shopping centre with lots of our favourite shops.

    Peter had retired young, a sort of ‘forced’ retirement, which was not at all how he had planned it to happen. But after a longish period of readjustment when, I believe, he was in mourning for his lost business, he began to appreciate his time at home. He had been involved in the car trade and eventually he began to realise he was lucky to be out of such a stressful environment. But I was still working, not full time, but nevertheless working. I was ending my teaching career with supply work. That gave me the best of both worlds. I could work more or less when I wanted, but could choose not to work if Peter and I wanted to do something or go somewhere together.

    We had a great partnership. I would go to work and Peter learnt how to do the washing and change the bed and he even did the ironing! What’s more, he probably did the ironing better than me. But that was Peter all over, he did everything really well. For example, he would iron my jeans and shirts inside out. That is doing the job better than me! The only area of domesticity left to me was the cooking. He had a motto: ‘you cook, I look’ which meant he would put on some music, pour us each a glass of wine and then would sit and watch me cook.

    I had become sixty years old in February 2010, but I decided to work on until the end of the summer term at the end of July. And when I retired I decided there were two things I would like to do more. The first was to walk and the other was to visit the cinema. I love watching films but I had missed so many over the years with bringing up the children, working and seeing friends. So that was what we did, together. Then I had a lovely new pair of deep blue walking boots for my birthday present, so comfortable I could have gone to bed in them. We then joined the Ramblers Association. I was not sure about my friends knowing we were now official ramblers, they do have a reputation for wearing bobble hats and carrying funny sticks, but as far as I was concerned they were well-organised, very friendly people and provided us with an ideal way to walk. We had no worries about trespassing or worse. It made us make a date in the diary we would keep, instead of doing something more trivial which could wait.

    After we had been on a few walks, Peter had a problem with his walking boots. They were old and inadequate, so he needed some new boots. He was probably a little envious of mine! When he was properly measured and fitted for these new boots he discovered he needed a size 13 and not the 10 1/2 he had always told me he needed. It explained all the blisters he had endured after buying new shoes. We didn’t realise it then, but those boots were to become the only footwear Peter would be able to wear when his feet became swollen and painful.

    The sore toe was becoming a bit of a problem. It was incredibly painful and quite swollen. I knew that if Peter was going to make an appointment to see his doctor, the pain in his toe must be really bad. As we expected, Tim told Peter he had gout. Tim had been a doctor for many years and obviously knew gout when he saw it, and so it was a simple case of prescribing tablets for Peter to take. I have to admit that I had no idea just how painful gout can be. Just a touch of the bed sheet on his foot made Peter wince with pain. He was in too much pain to walk for the enjoyment of walking. Getting from A to B was enough of an effort. Not only was it very painful, but it was also the fact that his toe and foot were very swollen by now. In fact the top of Peter’s foot looked just like he had been stung by a bee, so he needed to sit with his foot resting on a foot-stall.

    This gouty foot made it almost completely impossible for Peter to wear normal shoes. We were supposed to be going to the Picture House in Exeter to watch a live link of Jamie Cullum at the Cheltenham Jazz Festival, but Peter had a shoe dilemma. He just didn’t know what to put on his feet. We thought about his Crocs, or even his slippers. Finally he decided to wear the wonderful size 13 walking boots. He found that if he left the laces on the boot for the gouty foot very loosely laced, he could just about squeeze his foot in without too much pain.

    It was about that time when we began noticing the number of bruises appearing on Peter’s body. He seemed to have acquired rather a lot, and we could not explain the reason for most of them. I can’t remember how it happened, but Peter was advised by someone to stop taking a daily aspirin. He had Atrial Fibrillation and the aspirin helped to prevent a blood-clot. We never considered the bruises to be a sinister warning sign. They were just bruises, not painful, just a bit unsightly. After all, we grow up with bruises; they are part of our life, aren’t they?

    On Friday 27th May, 2011, we had been invited to Cornwall to visit our dear friends Lynn and Paul. We had met them about ten or eleven years previously and we loved their company. Paul is a G.P. and his wife a senior nurse in a hospital day unit. Over the years we had become firm friends. They owned a holiday cottage, and Peter and I were lucky enough to be frequently invited to stay with them while they were there. We were in the habit of us all, plus their dog, going for lovely walks either along the cliffs or down on the beach, mostly in the winter, spring or autumn when the place was not full of holiday makers. We liked to visit Padstow using the ferry-boat or drive to Fowey where we would have a trip on the river to look at the mussel beds and try and spot a kingfisher or egret. Then, we would look for somewhere to have lunch or dinner, depending on the time of day. Or sometimes we would make an early start and travel to Daymer Bay for breakfast in Jamie Oliver’s restaurant, ‘Fifteen’. The views of the beach from the restaurant were just beautiful. The sand stretches for miles in both directions, encouraging everyone to go walking along it after their meal. We loved it! We would have very happy evenings, sat around their dining table, sometimes with other friends of theirs who were also staying in their cottage or perhaps staying nearby. Or often it would be with their family and their friends. Usually, we would stay up far too late, drinking wine and discussing anything and everything, planning parties or, more often, the next holiday. We considered ourselves fortunate to be their friends.

    It was while we were on one of these visits to Cornwall when Peter’s gout was particularly painful and swollen, that Paul asked Peter if his G.P. had taken any blood tests to confirm the gout diagnosis. It was a surprise to me, to learn that he should have needed one, but then I am not a doctor. Paul had assumed that he would have had a test, as apparently, that was what he would have done. Paul invited Peter to visit his new medical centre when we next went to visit them at home, as he wanted to give him a blood test, probably to prove that the troublesome gout was the result of his lifestyle and nothing else. Peter needed no persuading to visit the new premises as the two of them had discussed the building a great deal and Peter was interested to see how it had all worked out. So it was all arranged and Peter and I went to visit Lynn and Paul and the new medical centre. About a couple of weeks later, we had a phone call from Paul.

    We had the usual catch up conversation after which Paul told Peter that he needed to make an appointment with his own doctor and to ask for a full blood test to be taken. The results of the tests he had taken had come back and he was obviously not happy about the results. He made Peter promise that he would make an appointment to see his own doctor. He said nothing more.

    The next day Lynn phoned me, telling me to make sure that Peter visited his doctor and to ask for a full blood test to be taken. It was important she said. So, Peter did make an appointment, but it wasn’t easy. He did not feel at all comfortable about asking his G.P. for a blood test and having to explain why. However, he did it, and it was done. Poor Peter, he hated needles at the best of times, and now he was having tests involving needles!

    But the next step was to get the results. It seemed like ages went by and we heard nothing. No results. Each time Peter phoned the surgery asking for his results he was told nothing, for a variety of reasons. We decided to ask for a printout of the results and then, Hey Presto! Peter was told that an appointment had been made for him at the haematology department at the Royal Devon and Exeter Hospital, on 15th August, four weeks away.

    Friday 29th July

    It was beautiful summer weather, hot and sunny, perfect for our week-end in Bampton, Oxfordshire, with John and Margaret, two more dear old friends. Even better, we were collecting Lynn and Paul on the way as they were spending the week-end with us as well.

    The plan was to stay at John and Margaret’s house, and if the weather remained dry and sunny, we would spend the Saturday on their boat cruising along the Thames. Fortunately the weather remained sunny and warm; perfect for a blissful day of relaxation, with only occasionally helping with the ropes at the locks. In between locks we enjoyed the scenery and the occasional glass of wine. John had to remain on tea and soft drinks only, being the captain of the boat and then also the car driver at the end of the boat trip.

    We moored alongside a pretty pub garden where we had a leisurely lunch. It was such a pleasant way to spend a glorious summer’s day, sitting with friends in the deliciously warm sunshine, but at the back of my mind was the nagging reminder that Peter’s appointment at the haematology department was slowly getting nearer and nearer. I was feeling very anxious, but I was also very aware of Peter’s own anxiety. There were questions I wanted to ask Lynn, because of her nursing background, but I did not want to ask them in front of Peter. Fortunately, there was a moment during the week-end, between the bathroom and bedroom when Lynn and I passed each other and I just had to ask Lynn my deepest worry: was it possible that Peter could have Leukaemia? I could tell from the look on her face that I had not asked a ridiculous question, in fact, she replied that she had asked Paul exactly the same question. She pushed open her bedroom door and called, ‘Paul, Jenny has just asked me the same question I asked you. Is it possible that Peter has Leukaemia?’ Paul looked at Lynn.

    Paul is, in my opinion, a brilliant G.P. He is the most gentle, diplomatic and professional man

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