The inertia of the summer holiday. So slothful have I become that it has taken four days to drag my slovenly self to the keyboard despite there being significance in Thursdays hospital visit to report.
This visit has forced me to confront several issues. None of which are easily resolved.
1. The weigh-in: so appropriate, I often think, as each meeting with my consultant has all the conviviality of a pugilistic bout - twas at once pleasing and disturbing. I tipped the scales at 78kilos, which translates to 12 4lb's. Great! Not losing weight... in fact gaining it. That's the heaviest I've been for a long time. The full horror of this weight did not reveal itself until later when a friend of equal height weighed in at two stone less! I'm supposed to be the one with the digestive disease... (this reminds me of when, at work, during periods of wellness colleagues often remark "You're looking well, you've really put on weight..." which can create hilarious stammered back-tracking and justification if you just allow a split second longer in glared response and then retort "are you saying I'm fat?" - the thought that they might have accidentally called someone fat sends people into apoplexy). Anyway, I'm not. But I am heavier. Must be muscle...
2. Richard Littlejohnisms - sat nearby in the waiting room were an elderly couple. She was the patient and had been repeateldy expressing disquiet to her husband. It was only after a while that I finally tuned into her rant: she did not want to have to see "one a' them 'foreign' doctors". Initially, of course, my pinko-liberal-lefty-ism (teacher, brighton, etc, etc) was affronted, but after a moments reflection, I actually felt for the old dear. Even as a cantankerous, bloody-minded, curmudgeor, who will force my will on the best the NHS has to offer, I have had times when I have just lost the will or energy to go on with this bastard merry-go-round. And, I'm not proud to admit, this has often been on days when I have had to see an SHO or Registrar in the consultants clinic (rather than the consultant himself), who often seem to know considerably less than me and occasionally have english as a second language. Now I can speak no other language beyond school-boy, so my hat is off to them, but when you have to explain everything to some green new-boy it's bad enough, so when there is a huge language/accent/understanding barrier it can be bewildering or, perhaps, even scary. I can only imagine that if you're old and trapped in the kafka-esque nightmare that is managing a chronic disease on the NHS you just want the comfort of the 'good old days'... Either that, or I am turning into Richard bloody Littlejohn. Shit.
3. Infliximab: Yep, I went in all prepared with my nonsense theories about stayig on low doses of steroids, with a back-up plan of insisting they refer me to the Professor at UCLH my consultant mentioned last time I spoke to him and... it didn't quite go to plan. I saw the IBD Nurse, which is fine, suggested my ideas, she went off to speak to the Doc (who "couldn't possibly" speak to me) and came back saying: "well, if we send you to London Prof X will only want to know why you haven't tried infliximab..." and gave me until september to make up my mind.
So there it is. I'm torn. Do I embark on they joys of an intravenous drug course (I have it on high authority it's very good - thanks Ali) or do I hold off, just use the steroids for longer, taper slowly and perhaps explore some new avenues I've been researching (more in next post!)?
Rituals of Loss
3 months ago