Sunday, 6 June 2010

You spin me right round

The morning after diagnosis day was a pretty uncomfortable one. I mentioned that I had a disproportionate number of white blood cells and we had to set about doing something about this. I was on continuous fluids to dilute the blood so it would function better than it had been with all those white cells making it more viscous, but my white blood cell levels were still incredibly high.

The method of choice for reducing them was to take my blood out and separate the white cells in a centrifuge before giving me the blood back. This also has the benefit of being a back up supply of your own white blood cells that can be used for later treatments if necessary.

The discomfort of this procedure was in having to sit with both arms in front of me for three hours and not being able to bend them as I had large bore needles in both.

While I was lying there watching my blood come out and go back in over and over again my PhD supervisor Colin arrived. It's to his credit that he didn't say 'I told you so' as he had been on at me for months to go and see a doctor as he had thought there was something wrong. Of course he didn't imagine anything of this magnitude but he had at least spotted something while I was persistently ignoring it.

By this time all my family had been informed as to where I was and what was going on so I spent quite a healthy portion of my time on the phone to them all. My younger sister Janine was living in Manchester at the time and as soon as she could get off work she hopped in her car and drove down to see me. My parents would come down a few days later.

Speaking to the family was absolutely fine. I think they had each been prepared by the parenting team so it was just a matter of reassuring them.

Even at this early point the protocol was for each of my siblings to get tissue typed to see whether any of them were a match for mine as the option of a bone marrow transplant had to be investigated. Janine got blood taken when she was visiting and the rest of them organised a trip to the centre in Glasgow to get theirs taken.

The next few days involved me doing even more phoning around to speak to people to let them know. Most of these went not too badly and the shock was met with resolve but I made a simple but crucial error on one of them. At the time my mobile phone contract allowed me to make free calls after 7pm so my decision to phone my friend Eileen before that time was immediately seized upon by her answering and defensively asking what was up. Telling her was horrendous because I had left myself with no way of trying to soften the blow and just had to blurt it all out. Eileen and I had gone out when we were 16 and I think I can safely describe her as my first love. I think it hurt her even more because I had been through to see her for the weekend only a few weeks before and had seemed fine so it was really hard for her to take - there was much in the way of tears and snotters. It's undoubtedly an odd situation to find yourself being diagnosed with a horrible disease yet being the one who consoles the people you have to tell. It stems from the fact that you've had time to come to terms with what's going on but they haven't so their response is like an echo of your own response to the news.

While it's essentially easier to have everyone being pragmatic and positive about everything there is also something really affirming about people crying over you. There's a primal honesty about it and it's not something I think should ever be sneered at. If you're someone who can keep a lid on all your emotions then good for you but there are those who either can't or just choose not to keep it all in.

I was to be in hospital at least a week and an awful lot happened in that time. All things considered there was a lot more hilarity than I would have expected in a ward like that. Details to follow......

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