10 days to go – am I worried?!

I have agreed to take part in a study which follows the psychological state of mind of living donors. Conducted by Guy’s Hospital, it comprises a series of questionnaires, one pre-transplant and the others at various stages afterwards.

There are some striking questions in there eg do you feel worthless/a failure in life (?!). Generally speaking, they want to know how worried you are about the operation, how it affects you etc.

The fact of the matter is that I’m not worried about my operation. At all. I know the risks. I know what I’m getting into. I know exactly why I’m doing it. I think about it a lot, but not because it scares me.

Similarly, I am a generally happy person, but right now I do not feel “content with life”. And for the exact same reasons that I think about the transplant.

I am not “content”, and think frequently about the operation, because I have a seriously ill son, and another son seriously traumatised by what his brother is going through. Because I have a wife who is going to be on her own helping Phil through the horrendous days following surgery, and feels guilty she can’t be there for me. Because I’m going to be unable to be there at all for Phil for those first couple of days, and can’t even be there for Chris initially.

Most of all I worry how Phil is going to feel when he wakes up in pain, with tubes sticking out of him. And if it will actually work..because if it doesn’t, everything he will have gone through will have been in vain, and it will be a crushing blow to him psychologically.

So let’s see what answers I give in a few months time. But the reality is that they will have very little to do with my own operation, and everything to do with how Phil is doing, and also Chris. And I bet that Guy’s researchers will find the same with ALL their subjects ie that the level of their contentment/anxiety is directly in proportion to how the recipients are faring.

Chris – the struggle continues

I’ve written before about how Chris – Phil’s identical twin – has been struggling to come to terms with his brother’s condition. His latest efforts to cope have been particularly painfully valiant to observe.

This is how Chris tried to explain his anxiety and insomnia to his psychosocial counsellor this week: “I try to clear my head so I can go to sleep. But then that’s when all my worries move in, like when you move house and your new home fills up with boxes.”

Chris has now started packing for when he goes and lives with his new family. But he faces a dilemma: “I want to take lego, but I’m worried because they have a baby and I don’t want her to accidentally swallow the little pieces.”

I caught him pacing the corridors sleeplessly the other night on the verge of tears, and asked him if it would help if I gave him a cuddle in bed. “I would like one, but I shouldn’t, as I’ve got to get used to not being able to have cuddles.”

What can you possibly say to an 8-year old boy who is trying so hard to be so grown up, yet clearly finds it all so so painful?