No transplant yet

I have left the layout of this as written but the latest news is paragraph 3.

The last two days have been spent in hospitals mainly waiting around for blood tests – lost count of the number of phials I have dispensed but there are a lot of holes in me. My anaemia has nearly gone and my response to the treatment so far has been described as excellent by the consultant. The suspicious proteins are still present in very small quantities. The goal would be to eliminate them all together if possible but so far I have only had a very short course of chemo so there is plenty in reserve. I write this while awaiting the verdict from the consultant in Leeds regarding the desirability of the stem cell transplant thing. (More later)

I have knocked out a fairly pensive poem while waiting to be seen, despite not feeling pensive at all – I am such a drama queen. It is so easy to lapse into muses on existential suffering or solemn sonnets on hospital waiting rooms but this really is too easy and pretty boring. I am also tired of my attempts at my sub Victoria Wood skittish parodies of the hospital experience – so where to now? Maybe I should just shut up for a bit, stop this silly blogging and do something worthwhile (whatever that is) with my time – but what? I am so happy rambling, happier creatively than I have been for years. Not happy with the output (who cares about that) but happy with the process. I confess I don’t feel an overwhelming responsibility to do anything worthy. I do my university work, although until the end of today when I should have a treatment schedule, it has been impossible to get really involved because of the likely hiatus. I work on research projects fairly solidly all day, feed the cats, make dinner for the two of us very reluctantly and only when I have to or can’t play the ill card, buy stuff on Amazon (lots), get obsessively involved in unimportant technical concerns (see note below), buy fish from the fish man, polish the tables we inherited with a special balsam, fix things with glue, answer cold callers sternly, grind coffee, chat with family on whatsapp, read, write my poems and watch a significant amount of TV – House of Cards, Peaky Blinders and Antiques Roadshow are highlights. M makes it possible for me not to have to think hard about practical things. We have fun fights over my spending habits – my utterly unprincipled enthusiasm for luxury such as Ocado shopping (goes against all that pontification on social reform I am so fond off) and the excessively hot house I insist on (I turn heaters on in bits of the house we don’t use). M is very easy to wind “wynd” up and I have enjoyed so doing all our married life – poor thing her brother did it when she was a child so she has had to endure a lifetime of wind ups from pesky males.

Later that morning. I saw the consultant and the plan is to delay any transplant or potentially not to do it at all. It depends on whether the current treatment can continue to be as effective and further reduce or eliminate the amyloids in my stomach lining. Until these have been further reduced he says the risk of internal bleeding would be too high. So I am having two more courses of chemo then another load of tests (endoscopy again hurrah!!!) then a full scan at the Amyloidosis centre in London and then reconsideration of the next step. This takes me until Easter. In my view this is an excellent outcome with the right degree of caution and plenty of options including some new drugs developed in the States due to come on line very soon. The only disappointment is that I am effectively still in waiting but that is something I am used to its just hard on M and the boys. All in all great though – onwards and upwards I remain very excited about all my projects and very optimistic overall. I am also looking forward very much to Christmas at home and maybe a gig in the new year after the next two courses of chemo.

I have had to do so much messing about in the last week or so you must be wondering what’s going on with the site. It’s a very boring story but I have had to host the site myself as the result of a wave of incompetence shared across BT, Vodafone and my ex web hosts. Anyway so long as we don’t get a power cut or the cat is sick on the server I hope the site will be a bit more reliable soon – I can enjoy the challenge anyway. The only thing you will notice is that you will be transferred to a strange address starting with (named after the river Fleet which runs near our house) and any old links you have bookmarked may not work.

Love to all – send me your news please – I get bored with my own.

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