Wednesday, 20 October 2010

The days ahead

I was wrong about Bob. Although he got reasonably positive statements from the specialist registrar on Monday, now he looks back on it he can see she was far from definite, rather evasive in fact. They got the news yesterday that the disease is back and there is nothing that can be done. I know we are aware that the transplant may not be successful before we undergo it, and we are aware that it is our last chance, but it still comes as a shock because all our hopes have been pinned on this.

It is worse too because several months have elapsed and he, like me, has had GVHD which is supposed to indicate the strength of the graft not only fighting the host but fighting the invading disease. Unfortunately, I think there is a window in the weeks after transplant when the immuno suppressant drugs are used to ensure the successful engraftment, when the opportunity arises for the disease to return if it is aggressive.

It is very difficult to think about the future for them both because, in order to be positive about the transplant and give it every chance of success, you don’t really look at what will happen if it fails. I only know that during the past few weeks of worrying I realise I know nothing about how lymphoma would kill me. If it is in the throat I suppose it would constrict and I would have to be fed through my stomach. I just can’t think about the future from a practical point of view until we know.

Although my thoughts are never far from all this, we do have a wonderful weekend to look forward to. As my birthday is next week on the 27th, Jonathan and Josie are coming on Friday evening for the weekend and we are going to celebrate together. Anna too has a couple of days off in the following week and plans to visit. Surprisingly enough in all this anxiety there is still time to have fun and laugh. We are making the most of the time to be with each other and will love being with the family over the next few days.

The temperature has dropped now after some unseasonal warm weather and I think we shall have the woodburner on over the weekend. It sometimes makes us drop off to sleep in the evenings but it is an indication of how warming, comforting and relaxing it is and that is what we need right now.

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