Heatwave

This has been a largely uneventful week, mainly because Raymond was in France and I tend to do things with him. We did have a pleasant surprise yesterday as Jonathan and Josie rang to say that they would like to drop in on their way to camping in the New Forest. They weren’t able to stay long but it was lovely to see them. Jonathan was quizzing me about what I thought of Moneywatch. I notice in the credits that he is the only named researcher.

They certainly chose the perfect weekend for camping as it is very warm and still. Their camp site allowed them to have a camp fire so they took a few of our logs with them. They seemed to have enough food for a barbeque banquet but then that is what camping is all about in summer. I felt quite nostalgic for all the times we camped on the continent when the children were small.

The hot weather at night is quite difficult to cope with at the moment as my skin is so itchy and dry. I long for some cooler temperatures but I know this sun is such a bonus for so many people, particularly if they are taking their holidays in this country. It is a long time since we had such a prolonged spell of good weather.

Some of the other symptoms of the graft versus host disease are also a little difficult to cope with so I hope the Marsden can offer some solutions on Monday because I think this is going to be a long haul.

The need for a break

Raymond is back this morning after a very short break in France where he has been working on the boat. He has to get on with the refurbishment as the boat is out of the water and there is a limited time it can spend on the hard. I have missed him and would normally have gone too and we would have gone for a longer period. Usually we spend some time exploring the region and I am quite happy reading while he works on the boat varnishing etc. However, I can’t go to France yet until my condition becomes more stable.

We have some friends in Carentan who have a gite and when the boat is out of the water we can stay there and it is very comfortable. When I think of the people we know in Carentan, our walks and the wild life I feel I miss it very much.

I hope we can get away for a few days in September once we know how the graft versus host disease is progressing. I would love to have a break and change of scene. This time last year Anna and I were in Ireland staying in a cottage belonging to a friend of hers. I had just endured six months of chemotherapy, a period of waiting to find a bone marrow donor, and the bombshell about my conception. So I really needed to get away. It was a wonderful week despite the weather which really recharged my batteries. There is always an element of risk in going away when you are undergoing hospital treatment, however this has to be weighed against the benefit of a change of scene, time away from the business and new places to explore.

A balancing act

In February this year I had a Hickman or Central Line inserted so that drugs and transfusions could easily and painlessly be given. It has proved to be a real boon. However, it needs to be flushed every week to avoid infection. When I was going to the Royal Marsden on a weekly basis, this was done when the blood was taken for testing prior to my seeing the doctor. Now that I am going to the hospital fortnightly, the line is flushed by the community nurse.

This has been done quite successfully but I had a different nurse today. She couldn’t flush any of the lines as they were blocked. In fact one was blocked last week when I went to the Marsden. She rang the hospital who said I could go in today if I was worried. As I haven’t got any other symptoms like a fever and there is no sign of infection at the entry site, the nurse confirmed that it would be all right to wait until I go to the Marsden on Monday for my regular appointment. The community nurse did say that if I was experiencing a blocked line on a regular basis, it might be that the valves were wearing out and it was a sign that the line should be removed. I would like this as it is beginning to chafe my skin particularly in hot weather.

I have used so much of the moisturizing cream I was prescribed by the Marsden that I think I am going to run out before Monday. It is quite a performance in the morning and evening but the rash has spread everywhere and only my face and feet are clear. Some people have to put up with eczema all their lives so I do sympathise. I’d rather put up with the rash for a time than go on another drug regime which may give me even more unfortunate side effects. It is something of a balancing act.

Sunny days

The weather is still fine and sunny. It has been a few years since we had a similar spell of warm weather. Last year it rained most of the summer just as many more people than usual were trying to spend a holiday at home.

The deer are very apparent at the moment. There was a doe in the garden this morning eating away at the flowers and over the weekend the whole family including the two fawns had a lovely time in the back garden. It is wonderful to see the fawns trying out their legs for speed.

My neck is very fiery at the moment as the graft v host disease eczema has spread. It is quite uncomfortable but I am inwardly stronger so I am coping quite well. It makes it easier for Raymond to go to France for a couple of days if he knows I am all right. He has some cleaning to do on the boat  before the new fuel tanks go in.

I am looking forward to seeing the BBC programme Moneywatch this evening as Jonathan has been working on it as a researcher for some months. He returns to Rogue Traders shortly for a while but this time as an assistant producer. When you hear the vast salaries of some of the BBC executives it is galling since most of the people who work for them are on very short-term contracts with no security.

I am so glad I can read again. I am making the most of this opportunity but I am beginning to feel I need to use my brain once more. I have never had such a long period of inactivity but physically I am only just beginning to regain my strength. There is a long journey ahead with lots of difficult symptoms to cope with but I am feeling more positive about everything.

A good weekend

Today is the fourth anniversary of Raymond’s accident. We are still no nearer to getting a date for the hearing. It is highly likely that the solicitors will prefer to settle out of court but the fact that it drags on and on is very discouraging and certainly doesn’t help to convince us that British justice is particularly fair to the victims.

Waiting and being passive whilst others are in control is difficult for most of us who have been quite active in our careers and daily lives. Occasionally in Raymond’s case there is a flurry of activity and then it all subsides again. I feel similarly passive in the way I must just wait and see how this graft versus host disease develops or gradually disappears.

Although physically I am on a plateau, I am beginning to feel more positive mentally which I think is something of a relief not only to me but the family who are not used to my being passive and inactive.

I am pleased that Raymond’s course is going so well. Somehow when people have travelled so far to get here (in this case Slovakia) we feel very responsible that they have a really fulfilling experience. They photograph a variety of people including on this occasion a young boy of just under two years of age who was absolutely excellent.

This afternoon I am looking forward to the Wimbledon Men’s Final. I have been a fan of Wimbledon since I was a teenager and have been lucky enough to attend on several occasions. It has been lovely to have the time to watch the matches on television without feeling I ought to be doing something else. When I was at school Wimbledon fortnight always coincided with school exams and the enjoyment was always tempered with a little guilt that I should have been revising.

Anna returns today and I am looking forward to seeing her. Altogether it has been a good weekend.

Coping with graft versus host disease

It is quite tricky coming to terms with the fact that the bone marrow transplant which aims to give a long term cure, brings with it symptoms I didn’t have before the transplant, such as changes in my mouth. My mouth is perpetually dry and my taste is altered. I always drank Earl Grey tea but now dislike all tea. It can be embarrassing to accept food when out with family or in a café which I then find I don’t like when formerly I would have enjoyed it. I have managed to stabilize my weight loss but not really to increase my appetite.

From my research I think my graft versus host disease is probably the chronic version. At the moment it is comparatively mild although the eczema now covers most of my body. It can last several months or even years but we won’t go there. So many people manage to cope with the most difficult disabilities that I must learn from them how to cope and rise above them.

Yesterday was a little cloudier and we finalized the arrangements for the course. The Slovakians have arrived and all seems to be going well. As ever I have played my small part but mainly I have indulged myself by watching Wimbledon. It is a luxury to be able to watch matches as they are happening which I couldn’t do when I was working.

Looking outward

I am trying to get used to my new regime of lotions and potions to treat the eczema brought on by the graft versus host disease. I am just glad that I don’t have to get out of the house early as I used to when I was working. The warm weather hasn’t helped but it is so good having a long spell of sun as it does lift our spirits.

I must remember next time I am at the Marsden to request the removal of my Hickman Line as it has served its purpose. Now with the skin rashes it is awkward to accommodate but has certainly been useful for when blood has had to be taken and transfusions received. However, now there is an increasing risk of infection so I would like it taken out.

Raymond is busy preparing the course for the people coming from Slovakia. He is also planning to go to the boat next week to prepare for the new tanks to be put in. Having been to a crime scene last weekend, Anna is off to Stafford on Tuesday and I am conscious that I am the only one who is not busy. Having had a very busy life, this is strange to me. When I first came out of hospital I was incapable of being busy anyhow as my concentration was very poor. I know that my energy levels are still lower than normal but I am conscious of being more outward looking now and my concentration has improved enormously. Since the onset of graft versus host disease, ironically I am more positive so I hope I can expand my world a little now.