Royal Marsden visit

Going to the Royal Marsden is always interesting. If I am lucky I meet people who have also recently had transplants and can compare notes. Yesterday Richard and Bob said that they had both got Graft Versus Host Disease (GVHD)and because they have had other complications beside their skin, they are on steroids. We all found we feel the cold abnormally and our partners this hot weather are sweltering as we beg for windows to be closed. We have found our sense of smell and particularly taste has been impaired. We can look forward to a food we know well but when it arrives it tastes nothing like that which we expect.

Richard has lost three stone in weight. Since coming out of hospital I have lost one and a half stone but I put on half a stone whilst I was at the Marsden because of all the fluid drips. I think my weight has settled now but I can’t eat much at mealtimes.

When I saw my consultant he was very pleased with how I seemed. He was glad that the GVHD had occurred as it meant that the graft would also fight the lymphoma, and also relieved that I had no other serious complications. I explained how itchy I was since the eczema was now all over and he asked me if I would like some steroids. I was rather reluctant as I wasn’t sure that the side effects of the steroids weren’t worse than the itching. The consultant also picked up on the fact that it seemed like a backward step going back to the immuno-suppressants. I decided I would put up with the itching a little longer in the hope that ultimately it will all settle down. Steroids have quite serious side effects for me including insomnia and dreadful nightmares when I do sleep. Perhaps it is a good thing I do feel the cold as in this hot weather I am wearing trousers and long sleeves to cover my unsightly rash.

I shall be returning to the Marsden on Thursday. Richard has just had his line taken out and Bob had his removed on Monday. We couldn’t get a Monday appointment as they were too busy, but my Hickman Line is coming out on Thursday. It has served its purpose well, particularly in hospital, and I shall not like the bothersome trying to find a vein to remove blood when I go for my appointments, but the line is now an inconvenience and since it was blocked last week is nearing the end of its usefulness.