I have been avoiding blogging. I just went off it. You know how it is like you go off smoked haddock or mutton. I don’t think I am back on it yet but when the news of my health is generally quite good I do feel more like sharing. Numbers went the wrong way last cycle which pissed me off because I had been quite ill on the treatment (usually a sign that it is working) and quite hopeful that I could be done with it in three cycles. Now the numbers are going in the right direction but I might need another dose to send my light chains back down to where they should be. I collapsed a week or so ago, 999 and whatnot (aborted after a heroic and mumbling-I-am-fine-while-not-feeling-it crawl to the settee), bare arse in the air, Jeremy Thorpe style, in front of my daughter-in-law (she will never erase the image of her father-in law on the bathroom floor deflated, damp and pale like a forgotten sun bleached swimming pool toy) but generally the chemo course has not been too bad. It’s a long time since I haven’t been awake and up by about 4:00 am but I don’t really mind that because me and the no-longer-feral-cat sit on the loggia drinking coffee watching the sunrise. It a favourite thing to do actually, it feels quite Angela Carter. I expect the trees to bleed golden wedding veils in time with my morning yawning and the cat purring.
Here is a truly disgusting photograph I am rather proud of. I am not sure which is more disgusting the meat or the drugs.
It would be so useful if you could predict your response to chemo and plan ahead but you can’t. I guess your body’s response to each dose is impacted by so many variables you are bound to get different experiences each time. In addition it may be a cumulative effect as it does appear to have a bit more impact the more cycles you have. The first one can be a breeze while the fourth can make you quite poorly. Then again sometimes your body seems to get used to it. In summary nobody can prepare you in advance so you rely on the patience of family, friends and colleagues to just put up with whatever monstrous mood manifestation the chemo presents. Daily chemo life is framed by the uncertainty of how you might feel that particular day but you have to avoid prefacing every plan, invitation, commitment with ‘well I will… BUT ONLY if I feel up to it.” Quite rightly people think you are making a fuss. Actually chemo is a great excuse for not doing the things you don’t want to do. Despite the potential for overuse, the chemo excuse still carries a good deal of weight – I still find the inhibited in the community will flinch at its mere mention. For example, I am obliged at the Uni to report every sick day and when I return to work I have to meet with my boss and we both have to fill in a form (a stupidly bureaucratic process) so when I took two days off after the Jeremy Thorpe arse in the air incident I duly reported my reason as ‘side effects of chemo’ – I could feel the admin staff digitally splutter as they reluctantly churned out the stock response the uni requires to such confessions. I strongly suspect that what they wanted to say was ‘shit! I am so glad that isn’t me! How does he cope? And why are we making him fill in this stupid form. Anyway I didn’t fill in the form and no one complained. Little victories – stick it to the man!
I have a few other things I want to talk about but instead of a giant post I will do several short ones over the next few days and weeks.