Thursday, 24 June 2010

Still in the library

Despite lots of promises the internet is still not connected and Ray is now taking serious compensation with the telephone company. As a household we all need telephone and internet connections as communications are important and there are no real alternatives.

I was very sick yesterday but better today and I am thinking about the future. When I was first diagnosed with lymphoma I was told I had two and a half to four years to live which was quite a shock. I also learned that the only hope of longer survival was a bone marrow transplant. Although I know that my transplant has taken I won't know if it is going to be effective against the lymphoma itself for some time.

The regular visits to hospital in some ways remove me from the truth of my situation. Control of my life has been handed over to hospital staff and everything is geared around these visits. How Raymond copes when he is not even ill, I'll never know. He sincerely believes I am going to get better and all this is temporary.

I know that nothing about this situation is certain and it is very difficult to plan anything. I keep thinking, "Suppose this is the best it's going to get". This isn't just pessimism but the result of looking around me at other patients. It makes you view the limited life you have very differently. We have to make the most of the here and now. As always there are lots of things that need to be done on the boat or in connection with the courses but I think we are going to have to plan our lives a little differently. They may still be dominated by hospital visits, at least for now, but the days in between must take on a more vital significance.

I haven't solved the problem of how I am going to occupy myself meaningfully but I have decided that it is unlikely I shall go back to doing the PhD at Southampton next year. It is partly because I don't feel inspired by my supervisor or think the relationship will work, but also because research can be quite solitary and maybe Raymond and I don't have the luxury of trying to find time to be with each other. Maybe if I do get better I shall find some other challenges which will not dominate my time so significantly. I hate giving up on anything but life has dealt us a hand which we can't ignore.

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