Friday, 11 September 2009

Its about time

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...


Paula said...

Good on you..I have UC, but I'll be honest, I have no idea what your talking about with infliximab but after googling it it looks like another treatment for UC but with some shitting side effects...anyway, I've been following you and Martin for only a very short time (4 days), but seriously you guys will never know what a turn around I have had in this very short space of time. I was diagnosed last yeat, but he blood first presented 2 years ago and before that there was other symptons. In short I had been thinking that somehow I have caused this on myself as I hold a lot of guilt, was totally stressed at work as we were always on tight deadlines and the last one in the chain playing catch up from everyone else and finally I'm also a mum to 2 small kids. So in short, I'm going down the positive thinking path now and I'm going to try other things to get the negative and acid stuff out of my life and get rid of UC.

Rich said...

Hey Paula

Yeah, there's some crappy side-effects with most of the UC treatments, eh? Still, I know of a lot of people for whom infliximab has been a real revelation. However, I am determined to give this a really committed try. I've had enough of heavy duty meds, and I'm really convinced that my mind has a significant role to play in my colitis.

I'm glad you've been inspired by what you've read. I have found writing this blog and reading others the biggest help I've ever had in dealing with UC - it's a pretty good community we've got going on here.

I really hope the positivity works as well for you as it has been so far for me. What have we got to lose?

Skinny Girl said...

Ha, ha! Glad to see I'm not the only one to have waited hours to see a doctor only for them to realize they forgot about me when they start closing up. (I was not a happy patient that day.) I have to admit all these postive thinking has gotten me a bit excited. And hey, you got in early...does that ever really happen? The postive thinking must be working already!

Whittles Wobble said...

Ooh my, it IS fun watching your tides change!

aliwalidoodah said...

You went in EARLY? That's like the holy grail of NHS waiting rooms. People will talk about you forever more, you will be famous!

Good decision for you there Rich. I didn't realise CBT was similar to Guy's hypnotherapy, I am starting CBT next month.

Rich said...

Hi Ali - I know! They're erecting a statue of me outside the hospital as we speak! The power of positivity...

Calling Guy's methods CBT is really just my way of describing it, but it does sound a little similar, although hypnotherapy and NLP might be applicable too.

Rich said...

Where are you getting the CBT done Ali? Is it specifically for the UC?

Anonymous said...

Very thoughtfull post on alternative therapy. It should be very much helpfull

Karim - Positive thinking

Anonymous said...

Very thoughtfull post on Alternative medicine .It should be very much helpfull.

Karim - Creating Power