A good visit to the Marsden

We have just returned from our visit to the Marsden having stayed with Jonathan overnight. The receptionists and nursing staff know me by name now and the nurse who took my blood said she would hurry the results for me in case I needed a blood transfusion so I could have it that day since she knew we lived a distance from the hospital. She said she thought I wouldn’t need one as I looked less anemic than before. That proved to be correct and all my blood counts were up possibly because I have been taken off the drug septrin.

We then saw the doctor who agreed I had graft versus host disease and confirmed what I already knew, that they welcome some manifestation of this as it means the immune system is working which will also fight the lymphoma. She checked my liver function and blood counts and said that I had the best kind of graft versus host disease in that it wasn’t affecting my internal organs. She prescribed a number of creams to treat my skin which in the heat yesterday was really bad, and also an anti-histamine for the itching.

She couldn’t say how long it would all last, perhaps some months, and warned me it could get worse but she seemed very positive. I have the impression that they can treat the symptoms of the disease but can’t actually cure it. I think what I have read on-line also confirms this. It looks as if I just have to grin and bear it for the moment.

Both Jonathan and Anna were pleased with the news and Anna thinks I am more myself lately. I think coming of some of the medication and not being anemic has helped enormously. I felt so tired and useless before which is quite depressing. I feel much more positive now and hopeful for the outcome in the long term which is not something I have been able to think about before.

Being normal

As the likelihood of meeting people with infections is less in the height of summer I decided to join Raymond and the photographic group for lunch. This is a real excursion for me. If the Marsden use steroids to combat the graft versus host disease, this will increase my risk of succumbing to infections so I must make the most of my opportunities. It is nice to be normal although difficult this weather refusing salads or garnishes because of the risk posed by raw vegetables. Yesterday I made potato salad and even cooked the spring onions!

This afternoon while Raymond was finishing off the course, Anna and I watched the woeful England versus Germany game. I can’t say enjoyed it or would have done even if the scoreline hadn’t been so bad. Jonathan telephoned at half time; I think he was nearly hoarse from shouting at the television. We are both looking forward to seeing him tomorrow.

This evening we went out for a drink after the course was finished. This is actually a luxury for me and it is good to do something together. It has been very hot today so we may appreciate it being a little cooler tomorrow when we are travelling. I never know what the temperature is going to be at the Marsden so I am prepared for all eventualities and I hope it goes well.

Glorious weather

I’m still marvelling at having the internet back again. We take it for granted that we can communicate instantly with people which is especially useful for Ray with his courses and wonderful for me at the moment in my semi-isolation. I also hadn’t realized how often I use it for looking up information. Previously if I didn’t have the right reference book, if it wasn’t urgent it just wouldn’t have been done. Certainly it means patients have become much more knowledgeable about their conditions.

Reading about graft versus host disease is rather frightening so I think I shall try to absorb the information in small chunks as given to me by the hospital. It is a difficult and sometimes dangerous condition to treat but it would seem that most patients who have an unrelated donor go through this at some point and the symptoms can last some years. I am hoping that my symptoms will remain mild and therefore bearable.

I have had a little more energy this weekend. This has been useful as we’ve had a few more problems than usual in organizing this particular course. We mainly rely on students as photographic models and most have either gone home or are on holiday. However, the fact that the weather has been so wonderful also lifts my spirits and makes us all more cheerful.

The joys of the internet

Raymond is running a course this Friday, Saturday and Sunday and, as usual, we have been busy organizing everything. It has been made more difficult this time because of the way our telephones and internet have been affected in the last three weeks. These days they are our essential means of communication. However, this morning the internet was connected at long last and I feel connected to the wider world once again.

Since last weekend I have been afflicted with skin rashes which have particularly affected my hands and wrists. I think this is graft versus host disease but I shall be able to confirm this on Monday when we visit the Marsden Hospital. One of the other patients who had his transplant at the same time as I did has had this rash for some weeks. Hopefully the hospital will be able to control the symptoms. If they can then this is not a bad sign. The doctors have noted that patients who have had graft versus host disease have a better long term outcome than those who don’t and ultimately that is what the transplant is all about. However, obviously a lot depends on whether this can be properly controlled so that it does not become chronic.

The whole procedure of transplant and what follows is still partly unknown to me. Before you have the transplant you can’t absorb everything as it is too daunting and sometimes too much knowledge of what might happen can deter you from making the only step which is likely to offer a possible cure.

At this stage it is possible to be optimistic and I hope that the medical staff at the Marsden will be able to offer some solutions. I think it may be likely that I shall be on steroids again but as I have lost so much weight recently in some ways the prospect isn’t as off-putting as it might have been. It is wonderfully sunny again today so it is encouraging me to be more optimistic.

Still in the library

Despite lots of promises the internet is still not connected and Ray is now taking serious compensation with the telephone company. As a household we all need telephone and internet connections as communications are important and there are no real alternatives.

I was very sick yesterday but better today and I am thinking about the future. When I was first diagnosed with lymphoma I was told I had two and a half to four years to live which was quite a shock. I also learned that the only hope of longer survival was a bone marrow transplant. Although I know that my transplant has taken I won't know if it is going to be effective against the lymphoma itself for some time.

The regular visits to hospital in some ways remove me from the truth of my situation. Control of my life has been handed over to hospital staff and everything is geared around these visits. How Raymond copes when he is not even ill, I'll never know. He sincerely believes I am going to get better and all this is temporary.

I know that nothing about this situation is certain and it is very difficult to plan anything. I keep thinking, "Suppose this is the best it's going to get". This isn't just pessimism but the result of looking around me at other patients. It makes you view the limited life you have very differently. We have to make the most of the here and now. As always there are lots of things that need to be done on the boat or in connection with the courses but I think we are going to have to plan our lives a little differently. They may still be dominated by hospital visits, at least for now, but the days in between must take on a more vital significance.

I haven't solved the problem of how I am going to occupy myself meaningfully but I have decided that it is unlikely I shall go back to doing the PhD at Southampton next year. It is partly because I don't feel inspired by my supervisor or think the relationship will work, but also because research can be quite solitary and maybe Raymond and I don't have the luxury of trying to find time to be with each other. Maybe if I do get better I shall find some other challenges which will not dominate my time so significantly. I hate giving up on anything but life has dealt us a hand which we can't ignore.

Re-evaluation

Still no internet and it is so difficult to penetrate these organizations. This morning an engineer arrived to fix the internet only to discover that the broadband has been allocated to the wrong line so another few days I suppose for this to be sorted out.

Prior to my admission to hospital in February this year there was so much to do. I had to anticipate not just what I would need in hospital but how the home would function and I had to make arrangements for my mother's welfare so I was kept quite busy.

When I came out of hospital I was prepared to some extent for the isolation and I began what is proving to be a very long climb towards physical improvement by my mind was in a fog. It is difficult to underestimate the effects of the high dose chemotherapy and the resulting transplant and drug regime. I was devastated that I could not longer read - not even the paper and my concentration meant even watching television was difficult.

The most devastating element was that there was absolutely nothing for me to do. Raymond was run off his feet doing everything in the house as I was banned from handling washing or washing up. Gardening was absolutely forbidden and for weeks I couldn't read. Although I have gradually gained ground in concentration and reading which is wonderful, if anything when my head began to clear I was even more conscious that having spent of life of being busy, I was now completely useless and redundant. When the high points of a week are the visits to hospital, you know you are in trouble.

My visits to the hospital made it clear to me that this was not necessarily a case of this will either work or it won't. Obviously I hope and pray that it does. But even when the transplant does work, it would appear that many people have to visit hospitals far more frequently than I had been given to understand. This has meant I must re-evaluate the future.

The phones are fixed

The telephones have now been fixed after two weeks but it will be a few days before the internet is up and running. I learned on Thursday that the PET scan shows no activity in any of the sites where I had lymphoma before which is a good sign. There were some signs of slight activity in my throat but the medical staff have concluded that this is the result of a slight infection and, in fact, I was sick for no particular reason on the day after the scan.

Now I can begin to look to the future but I'm reconsidering the events of last summer as I have some important decisions to make. By June 2009 when I began my blog, I had been having chemotherapy for six months and it was taking its toll. I had been enjoying my PhD studies as this gave me a focus. In July 2009 Anna took me to a cottage in Ireland belonging to a friend's family. This was a godsend as I was low physically and psychologically.

The weather was pretty cool and sometimes wet but the experience was uplifting and just what we needed. We managed to maintain a balance between doing some work and going out.

The first cycle of chemotherapy which I had in 2009 was only partially effective and this worried me as I knew that a bone marrow transplant could not take place unless I was in full remission. So a new drug had to be found and this, in the end, did prove effective. However, by the end of the summer I realized that I was going to have to suspend my PhD studies.

This was a bitter blow as I had fought hard even to start alongside having chemotherapy. It had been something to hang on to when my whole background started to fall apart but by the end of summer the chemotherapy was affecting my concentration so suspension was inevitable. Instead of starting a new semester in October 2009, all I could cling on to was the fact that the new chemotherapy drug seemed to be working and I should prepare for a bone marrow transplant, perhaps in the spring. The fact that there was so much preparatioon to be done as I would be in hospital for weeks and semi-isolation for months was some focus for my attention which helped to compensate me for having to suspend my studies.

Waiting for PET scan results

Yesterday my PET scan signified I have reached an important milestone since the transplant. As I have some big decisions to make about the future, I am revisiting the period after February 2009, when I had started chemotherapy aned my PhD studies. It was so emotionally charged that I was not always able to see the bigger picture.

Towards the end of May 2009, a potential bone marrow donor was found in Germany. I was very nervous that there was only one but excited that there was hope. The previous few months had exhausted me physically because of the accumulated effects of the chemotherapy, and psychologically because of the damage done to my self-esteem about the circumstances of my birth and the way the truth was kept from me. However much I sympathized with my parents' desire for children, the deception hurt as much as the knowledge that my father was not my biological parent.

By the summer I was coming to the end of my first University semester. I was quite pleased that I was picking up modern research methods, largely thanks to Anna, and getting back into academic writing. We were nearing the time for the end of year reports and no advisor had been appointed so the head of department volunteered. As she is very dynamic I was quite pleased as I felt this was needed to steer the research area back on track to how I wanted it. However, this appointment crossed with my supervisor asking someone else to be my advisor so, unfortunately, the head of department would no longer be involved. An advisor can play a key role in the success of a PhD so although I liked the advisor on a personal level I was disturbed that she had little experience in my field of study and I felt she had reservations about this too.

Once again I felt that because I wasn't a young student embarking on an academic career, my needs were not being taken seriously and this caused me much disquiet. If you ask anyone about the success of their PhD studies they will say that their relationship with their supervisor and advisor was crucial. However, by that time we had reached the end of the semester and I was feeling weak with the chemotherapy.

Three months after transplant

It's three months since my transplant so there are lots of tests at the moment. Last week it was the bone marrow biopsy and today the PET scan. However, I have been looking back at the period when I started my PhD as the distance in time is allowing me tobe more objective. I had met my superviser briefly the previous year when I first applied and I was disappointed that he was not more enthusiastic. He seemed really to be tryingt to say that a PhD was for students about to set out on an academic career rather than for someone my age keen to pursue an academic interest. If tuition fees weren't being charged I could understand the priority, but learning is supposed to be lifelong.

I started the PhD in February 2009. Straightaway my supervisor reminded me that in view of my chemotherapy, I might have to suspend my studies. Whilst this is exactly what I did have to do in the end, this wasn't really said so much for my benefit but because the University cannot afford to have students falling behind with their work as it reflects badly on the supervision. I do appreciate this and I was able to meet all deadlines. It was certainly interesting and demanding which is exactly what I needed during that period. Having finished teaching the previous year, I really felt a sense of purpose.

The chemotherapy initialy was not qute as bad as CHOP-R haed been in 2007 and I didn't lose my hair so I didn't look or feel like a victim to the same degree. However, during this period a search was being undertaken for a potential bone marrow doonor which proved difficult. It was during this time that I found out that I was donor conceived. This was a life-changing experience and not in a good way as I felt it as making the hunt for a bone marrow donor more dificult since I was no longer confident about my ethnic background. Throughout this period I ontinued with my studies and did not mention this discovery to my supervisor as the relationship was not close.

Trying to be positive

The journey I am currently undergoing has been difficult physically and psychologically. I admitted to Anna yesterday that I was feeling somewhat depressed and she commented that it wasn't unlike the feelings some people get when they retire except that I had never planned for a retirement which was going to be so inactive.

If I hadn't been diagnosed with lymphoma, I doubt if I would have retired when I did, but you can't go on for ever. As it was, having had a year of teaching through illness and chemotherapy, my final year of teaching took place whilst I was in partial remission and feeling comparatively well. I knew I would miss teaching, the companionship of staff and relationship with the girls. However, I had had a successful career which ended on a high.

I had a lot to look forward to. During the darkest days of my illness, Raymond had booked two trips on the QE2 which we were due to take in the September, two months after the start of my retirement and I had already been accepted by Southampton University to study for a PhD. When I finished my MA many years before I would have loved to have gone on to do a PhD but the children were young and I needed to earn a living so this was something I promised I'd do when I retired. Before submitted a proposal there is always plenty of research to carry out and this was fun. Sometimes it involved Anna and I studying together, going to libraries or the National Archives.

I was due to start the PhD in February 2009 but by November 2008 my partial remission was over and the lymphoma had returned just as the oncologist said it would. I decided I would still go ahead as it gave me something to aim for and I was keeping occupied. I did change from full to part-time and although my chemotherapy had started in January 2009, I was very positive.

Back in the library

We have two outside telephone lines and they have now been mixed up for days and the internet is not yet working so I am back in the library. I find it very difficult being cut off from the outside world bearing in mind I am supposed to be in relative isolation. I went to the local library the other day and found it closed with just a hand-written note. Raymond went inside to find the decorators were in but no one had thought to say either why the library was closed or how long it would be closed for.

I have been to the Marsden twice in the past ten days but Monday's visit was a marathon. We left early in the morning and had blood taken. I then went to the pentamidine room as I have been taken off septrin in case it was lowering my red blood cell count. Apparently my red blood cells had fallen further so it was suggested I should have a transfusion. I said I would have one provided I could have it that day as this has been a busy week for us and I didn't want two consecutive days at the hospital.

The appointment with the doctor went well and he agreed that I could have one bag of blood rather than two so it could be fitted in. After that I went for my bone marrow biopsy. It's all happening because we are at the three month landmark. That was as painful as I remember but the afternoon was not over as it was back to the ward for a blood transfusion. We eventually got home at 7.30 p.m. and I was so exhausted I went straight to bed. I am back at the Marsden next week as I have a PET scan, another three month landmark. I just hope the results are encouraging.

A reclusive life

After a couple of dismal and very cold days, the sun is out and the weather is picking up. It really could do with being a little more consistent in temperature considering that it is June. I still feel the cold dreadfully so the warmer days are so much better.

Ray has had to prompt his solicitor once again about trying to move ahead with the case concerning his accident four years ago. There ought by now to be a time schedule instituted by the Court. We have just received the report from the other side’s forensic accountant and over the next few days we shall try to examine its findings carefully as they will need to be refuted. It is difficult to believe the games that insurers and loss adjusters will play to avoid paying out in what should be a black and white case. Biffa, whose lorry ploughed into the line of stationary traffic in which Ray was situated, have washed their hands of all responsibility so the moral question does not really come into play.

I ought really to be making the most of the summer because when the autumn and winter months come there is going to be so much more danger of being surrounded by infection. However, I am finding it difficult to motivate myself into activity. If I could be sure that this bone marrow transplant were working it would be easier but I am so afraid of being too hopeful and thinking I have a future that it is very easy to become depressed because the outcome is unknown. The drama of being in hospital is over and now I must cope with a somewhat reclusive life and a lack of independence and I am finding this more difficult than I had anticipated.