I know I can’t change the ultimate outcome of this disease. Wherever possible we have tried to work with the medical staff and create a rapport with them and this has led to our having greater choices about treatment and deeper understanding of why particular actions have to be taken. I know - because I have been frequently told - that a great number of people have been praying for a cure. Strangely enough I tend to be more worried about how well I shall cope with the disease, particularly in the later stages. Will I have the courage?
This thought has been with me for some time but was particularly brought home to me by a very thoughtful card I received from our former vicar who has been going through great difficulties himself because of very serious illness. This is a time when we all question our own bravery, particularly during those long sleepless nights.
If this had happened to me years ago without all the events of last year, I would probably have handled it in a very private way. There have been several comments lately about how the British people had become more sentimental since the death of Princess Diana, and tended to be rather mawkish and over-emotional. Certainly, even if the idea of a blog had been available, I doubt whether I would have dreamt of being so open about the events of the past eighteen months. So why the change? Shouldn’t the middle classes set an example by not pouring out the innermost details of their lives? Have we all become part of the OK Magazine generation?
I recall March 2009: the chemotherapy regime was not really working and unless I became disease-free I knew I could not go for a bone marrow transplant which offered the only hope of a cure. In addition, they were having great difficulties in finding a near match as a bone marrow donor. It was at that point when I discovered I was donor conceived and the bottom fell out of my world. It has been very difficult coming to terms with this, readjusting relationships and ideas about family because where we come from does matter.
At the heart of it all was a secret from which I had been excluded. The previous generation have every right to be more private about their sexual lives but I did not feel I could be bound by their secrets or personal pride any longer where it affected me. I had to tell my immediate family because I was grieving and this helped enormously but no one I knew had a similar experience. Therefore, I decided I would write about it and my experiences with lymphoma. I gained strength from internet contacts with other donor conceived adults also suffering this loss of identity but, more importantly, I didn’t have to struggle on pretending that I was strong; I could admit vulnerability and because I trusted other people with my concerns, they in turn told me how they could now understand what I was going through so much better.
In the last month since we learned that the transplant had not worked, I have been amazed at the kindness of so many people in contacting me and their support is carrying me through. I may not have the courage I should have, but I am being held aloft by others.