Friday, 25 June 2010

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.

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