One thing I do know about recovering from a bone marrow transplant is that it is not an unbroken road to recovery. When we went to the Royal Marsden on Monday, Bob, who had his transplant at the same time as I did, was suffering from a slight sore throat and cough. By the time we arrived he was in a side room, had already had his chest x-rayed and there was discussion going on as to whether he should be readmitted to the ward where he could be closely observed.
I suppose that as there are fewer coughs and colds around in summer we had become a little blasé about the dangers of infection. I was of a mind that it was a calculated risk but all the time the medical staff are very keen to know that you are keeping well and we have to understand that small infections which we could easily shrug off in normal times, are much more dangerous when you have no immunity.
Progress is a balancing act. I was gradually taken off the steroids and anti-rejection drugs and shortly afterwards developed graft versus host disease. The consultant is pleased that this has demonstrated that the graft has taken and it is able to fight disease (important for long-term survival) but he has said that at the moment the graft is too strong and although I have tried to tolerate the effects of GVHD, enough is enough. I have been put back on a fairly small dose of cyclosporine (anti-rejection drug) with the hope that this will calm down the eczema which is difficult to bear as it is all over every part of my body. The process of recovery is trial and error as far as the drugs and their quantities are concerned as everyone is different.
I am impressed at the staff’s level of concern for us as individuals. Their other balancing act -which they do seem to get right - is the absolute professionalism which runs alongside knowing us as individuals and the friendliness which that engenders. Every time we go there, although the driving is tiring for Raymond and it involves some expense, we both heave a sigh of relief and remind ourselves how thankful we are that we made the decision to go there for the treatment.