I stride into the Royal Sussex County Hospital in Brighton with a spring in my step. I have boy 2 with me due to the usual childcare shenanigans - this is his second trip to a gastro appointment with me, at least he'll have some grounding for how to argue with a consultant in the future should he ever have to, god forbid.
My mind has been focused on this appointment for the last two days. I have been gliding around on rollerblades of elation. I don't want to sound like some dude who's just been pressed into the duplicitous embraces of some preying sect, but I havn't felt this good in ages, over 6 months if not more. The key here is i suddenly feel like I've just taken back control. I've wrestled my tenuous future out of the slightly disingenuous hands of somebody else. I don't really think that my consultant is insincere and double-dealing, but he and I have definitely been travelling down a path of inevitability. Try this drug, try that drug, try this drug as I'm drawn slowly but inexorably toward surgery like Indiana Jones on a conveyor belt into rock-crusher oblivion. Well, I've just side-swiped that evil-henchman sucker with my bag of indigenous idols! Yeah! And now I'm riding the abandoned mine-cart at knuckle-whitening speed toward the waterfall of freedom.... well, enough of the Temple of Doom based metaphor.
This fizzing positivity is effecting the world I orbit. Traffic parts in front of us as we drive toward the hospital. I am not exaggerating when I say our journey there is quicker than I have ever managed in the car. So much so, that we arrive on Level 9 30 minutes early, even having loitered in the little cafe in the childrens hospital. I check in, apologising for being early (so english!), and take a seat in waiting area 1 (I love the way in my gastro dept, they make you wait in one place then call you through - the novices faces light up "ooo i'm through..." - weigh you (12st 9lbs: eek more weight-gain... hang on, thats a GOOD thing: if I'm gaining weight the UC can't be bad. Ha! I'm getting the hang of this), then make you sit and wait just round the corner, out of sight of the first waiting area. Very clever). For a moment I doubt my new-found resolution when I discover I've left my book at home. Bugger, a long wait with nothing to read. Fortunately the boy has his book, so he's cool. Glancing round the seating area it dawns on me how many people there are in today, more doubt just starts to peak into the light... then before i know it I'm being called through and weighed. Before I get a chance to determine which registrars are new, the Nurse Practitioner, for 'tis she that I am seeing today, is calling me through to her room! I am in and being seen 20 minutes before my actual appointment time. I have waitied for hours in this place before - once they even managed to forget me and in my wonderfully english manner I sat there until they were closing up..., but this time, FOR THE FIRST TIME I'm in early. My nurse actually remembers me and asks me a personal question straight away. No going over old ground, reasserting who exactly I am (I don't blame them for this - I have the same problem when the parents of kids I teach greet me warmly by name in the street, while I scrabble around my mind for their names, their childrens names, whether or not they are actually parents etc). So we cut to the chase.
"I'm here to arrange the start of treatment with infliximab" I state.
"Your chest x-ray was clear, so we can get up and running straight away"
"Well, the thing is... I'd like to leave it for the time being"
She fixes me with a stare and raises one eyebrow - we've had many an argument about beginning drug treatment (most of which I've been proved right in, even if the evidence has cost me several days in hospital).
"Ahhh. Are you off the steroids then?"
"No. But I have reduced my dose again... 5/5/10mgs over three days" ( the power of positivity encouraged me to do this)
"So, 5 one day, 5 the next, then 10?"
"But you don't want to start the infliximab... yet?"
"No. Look, I'll be honest with you. I'm going to try some alternative therapy instead"
"Oooookay. What is it?"
"Well, it's a sort of hypnotherapy, perhaps a little like CBT"
"Right" She writes 'CBT' on my notes, "And where are you getting this therapy from?"
"Ok, listen..." in for a penny, in for a pound, "I write a blog and I converse with many other bloggers and sufferers out there, and through one of the other bloggers I have been turned on to this apparently effective alternative therapy, by a man called Guy Cohen... who rid himself of UC"
She slowly writes 'Guy Cohen' on my notes. Which I actually thought was a bit weird.
I could see in her eyes she was doubtful. But i must give her credit. She was ultra professional and as much as she could be when really bursting to say "it'll never work" she was supportive. She said:
"Ok. You have to try anything that feels right to you. But, i don't want to lose you back into the system. I want you to make another appointment because getting back in can take a long time. How long do you want to leave it? Any time, because we can either cancel it if you're feeling well, or bring it forward if things go pear-shaped..."
"err, three months?"
"Great. I really hope it works for you Rich"
She really meant that. And then I left. Five minutes before I should have gone in...
Rituals of Loss
3 months ago