I usually try and formulate what I want to say before putting a post together so I can come across all eloquent and intellectual but I'm going with a more stream of consciousness effect for this one because I've got lots to say and no really sensible way of tying the different threads together.
Firstly I had an endoscopy last week to replace the tube that goes into my stomach, through which I pump liquid food to keep me at my pleasantly plump (and healthy looking apparently) current weight. There really is no fun way of having an endoscope stuck down your throat to remove the old one by physically hauling it back up and out and the general misery of it is compounded when the sedation they give you hasn't really worked. It was a shite way to spend an afternoon and all the coffee and biscuits in the world didn't make up for it. I don't know if it really is linked to such a relatively minor procedure but I felt rubbish for the whole rest of the week. Anyway the replacement one is in and this time it is only held in place with a water filled balloon rather than the mushroom fitting of the old one. This actually means a bit more maintenance as you need to replace the water in the balloon weekly, for which I apparently need the help of the district nurse. She is coming tomorrow to show me how to do it and we've already agreed that if she's satisfied that I know what I'm doing she'll just supply me with the equipment and let me look after it myself rather than have her come every week for such an easy job. After all I looked after my Hickman lines perfectly well back when I had each one of them popping out my chest and that required a sterile environment and all manner of paraphernalia. Anyway, if all else fails I've got two sisters who are nurses and I'd rather use their time than a district nurse who probably has dozens of patients a day to see.
Secondly I feel I need to address something and this is the thing I'm really struggling to put into words. Today I was reading about a post lung transplant patient who is having complications and needs to have a biopsy done to test for lymphoma and it brought into sharp focus for me a bit of an issue I have. I worry almost incessantly about what life is going to be like post transplant for me. I do this because I've done it once before and know full well that the treatments doled out by the medical profession often come with horrific side effects. After all my current predicament of needing new lungs is a direct result of the treatments I had to cure me of Leukaemia. I have no idea what fresh horrors life post transplant could bring my way, I only know that I at least want to see what life has to offer me. In talking briefly to this other patient today I told her that it's ok for her to be scared and to let her friends know that because, and here's the crux of what bothers me really, I think that friends, with the greatest will in the world, mostly think that after a transplant you're past the worst and will keep getting better. Whenever some problem arises they are so used to us patients being brave or strong or whatever other adjective they want to throw about that they don't always see that we're just as terrified as they are, and that is our own damn stupid fault because we don't bloody tell them.
I have a few friends who think through all the consequences of what my post transplant life will be like and I'm very lucky to have them to talk to about these sort of things, but for every one of them there's at least five who don't really understand that my life post transplant is going to be a never ending drive to avoid infection because my immune system will be compromised. Even under the best scenario it'll also have a periodic round of bronchoscopies (tube up the nose and down into the lungs - a true joy) and biopsies for the rest of my natural life. I know normal is a figment of my imagination but my life is going to be so complicated for so many different reasons that I'm not sure that even I can comprehend it fully. So how can I expect other people to? The answer really is that most of the time I don't, but when I see someone clearly struggling with their lot in life and people are offering little other than bland platitudes about how they'll be fine because 'they're a fighter' or that 'you've beaten worse than this before' I reserve the right to get hacked off on their behalf because words like that don't help. Not really. Sometimes when you're crying through fear you don't need someone telling you it's going to be all right, you need someone to tell you they know that the situation is shite but that they'll hold you as you cry.
On a slightly lighter note, while I've never been a great James Bond fan, like most young boys I watched all the films and, being as obtuse as I sometimes am, I always loved the one that is generally regarded as most lowly of them, On Her Majesty's Secret Service. Yes, George Lazenby was rubbish but unlike most of the other films there was a somewhat coherent plot, a wonderful score and an ending that beats all the other films hands down. It ends with the Louis Armstrong song We Have All The Time in The World and I have made a promise to myself that post transplant I'm going to find a kareoke bar and sing that most appropriate of songs. I'll cry my eyes out when singing it and no doubt will take a few people with me but I want to do it.
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