Tuesday, 30 September 2008

Bone machine

Aha. Messrs Brown and Cameron must have read yesterday post...

Visited the GP this morn to get more drugs. I should have reduced my pred dose to 5mgs a day by now (and therefore have some left) but all is not well in the world of the bowel. Not awful (I have yet to completely refuse to fart), but not good, not right, and most importantly not solid. So, I waited for an appt with my usual GP to avoid the complex issue of persuading a less familiar doc that I am capable of deciding for myself when I need more steroids, rather than speaking to a consultant first. Fortunately the doc agreed and gave me a prescription for enough preds to last until the beginning of Nov, when I have another appt with the rheumotologist, at the current 5/10mg dose. Although after the most recent visit to the bathroom I may just have to up that to 10 mg a day. Mmmm, I'll give it a few more days.

What was new, though, was an extra concoction of drugs. My GP was concerned that I had been on the preds for a while (about 4 months, though pretty low doses), citing worry about weakening my bones, particularly as he seemed pretty intent that I was a 'fit young chap'. Does 35 still count as 'young'? So to counter this he has also prescribed me Fosamax and Adcal-D3. The adcal stuff is just a vit D supplement, so no great fears there, but the Fosamax is some sort of bone strengthening stuff (some sorta acid, I forget exactly what now), and so I read the possible side effects and 'when not to take this medicine' stuff as usual. This included instruction not to take if you have/are suffering from stomach problems including ulcers. Ulcers. Ulcers. Ul-cer-a-tive colitis... Bum. Both the doc and the chemist assured me that this was strictly related to the upper digestive system - the doc looked it up on the computer and the chemist looked it up in her little black book. But the seed is sowed...

Anyway, they didn't have in the chemist, so I 've ordered it. Excellent news, as this means I can delay any decision for at least, ooooo, a day.

Interestingly, it also instructs you to take it 30 mins before breakfast and stand upright for that period of time. But only once a week.

Monday, 29 September 2008

Don't believe the hype

At the Tory party conference today the Tory health spokesman Mr Andrew Landsley announced plans to create the option for anybody going in to hospital for planned care to have a single room.


I would also like:

  • to see the same consultant every time I go to gastroenterology
  • to wait less than 4 months for my 'rushed through' appointment to discuss azathioprine (still waiting...)
  • to have access to drugs and therapies that are not yet even being considered by NICE
  • not to be told by a consultant that he can't help me unless I do exactly as he says even when I have serious reservations
  • to be able to get a prescrition from the hospital rather than having to make appointments with my GP that are a minimum of 2 weeks away
  • to not have to experience the farce that is sitting in front of my consultant while he dictates a letter to my work, which he then emails to SOUTH AFRICA to be typed up and posted back to the UK...
  • to get a blood test without having to wait for over an hour clutching a Tesco-deli ticket
  • to have an appointment for an x-ray/scan that does not involve a wait of hours
  • better pay and conditions for my wife - a nurse (yes, we are the classic key worker family)
  • and so on and so on and so on ad infinitum.

And while he's at it he can bloody well go and find a cure for UC. I am not a Conservative voter. But I am not happy with my experience of the NHS as a sufferer of chronic illness.

The NHS, in my opinion, is much like the current economic situation - a hugely important issue used as a political football. Instead of cheap, and indeed faintly ludicrous, point-scoring opportunities isn't it about time political parties worked together to reach a solution instead of vacuous polemic and rhetoric?

It's not staying on a ward with other people that bothers me, it's the inexorable demise of our health system.

Friday, 26 September 2008

You've been gone too long

Nope. I have not been sucked into a black hole. As far as I can see the world has not changed since they turned it on. So, where the heck have I been? Um, good question. I think the only answer is: I went back to work. And to balance out the effort of working I have become intellectually lazy in all other elements of life. But, now I'm rousing myself and getting back on it. A brief resume of the first 4 weeks back at school:

  1. The first two weeks back: no toilets. Not ideal for a man in my condition. Actually I exaggerate here, because it was the student toilets, not staff, and it wasn't all, but about 75%. However this still begs two questions: i) surely, if you are going to refurbish the toilets in a school of 1700 students over the summer holiday, you do it before they end? ii) is there not some law about the minimum number of toilets available - some sort of child-to-toilet ratio - that forces the institution to remain closed? I tried that second one in order to secure another week or 2 off, but to no avail (I know, I know...). I shoulda got out my NACC card.
  2. Incidently, I have worked at this school for 7 years and this is the second time the students have had a complete toilet overhaul. The first time they even got to vote on the colour (citizenzhip at work...). This second hold-up was due to the 'vanity units' beng unsuitable. Now call me a cynical old bugger if you like, but never have they refurbished the staff loo. And there are only 3 male cubicles in the whole school - a lenghty building, at least 300m from end to end. And the one nearest me is, frankly, disgusting. Someone should be ashamed.
  3. Crappy timetable. No free periods on a monday or a friday - surely the days when one needs to be cut a little slack?
  4. Good results for my last GCSE group. I cannot take much credit - they were a great group of kids. Sadly this already means somebody is setting targets for next year based on exceeding this year - because year-on-year the government/management/public can only perceive that results must get better (as measured by grade totals). Cos there's nothing invariable about 330 new children each year, is there?
  5. New GCSE group contains the most arrogant girl in the world. Cheeky kids I can take. Lairy kids I can take. Mouthy, sweary, downright bad kids I can take. But, arrogant kids I just want to slap.
  6. A strange cyclical UC situation. I have noticed this happening before. But not while I was on the meds. I am still taking 5/10 mgs of preds alternately, which has continued to keep evertything relatively stable. But I am definately going through a sort of poo-consistancy cycle. It goes something like this: On holiday things got loose (I put it down to the tomatoes) then it all got a bit stuck (change in water thinks I), then we got home and things loosened up again (change back to the normal water, plus pre-school mild apprehension?), then it firms up again, so much so I even started to carelessly risk olives (!) spicey food (!) blue cheese (crazy fool!) and so on, but it only got more stuck (even... brown bread!!), and now its got loose again (doh!). I have not had to go to the loo more than twice a day, during loose periods, too often, so its not been horrendous, but it has lead to more of the old mental scouring of everything I have/have not eaten/drunk. And several occasions of crouching and staring intently into the bowl trying to identify morsels...
  7. So, I 've made an appointment at the GP's for next tuesday to get more preds, cos I don't want to stop taking them just yet and I'm running out. And I've just found a bloods envelope (that I hid from myself) that reminds me I'm supposed to get a test while I'm on the 5/10 split.
  8. I'm back on those blinkin' yogurts...
  9. Everything has been put into perspective by the birth of my best friends baby boy. Fab.

Tuesday, 9 September 2008

Bang, Bang You're Dead.

Currently in our household the Large Hadron Collider is causing much consternation. I have to admit I, myself, have been rather capitivated by this mind-boggling machine. Its job (as I, an utter physics dullard - I have qualifications here: A-level physics, failed twice - understand it) is to collide protons under controlled conditions at speeds just below the speed of light in order to create explosions of energy/matter that closely resemble the circumstances of the fledgling universe right after the 'big bang' (for a better explanation try the BBC). The purpose of this is to seek out the existence of a mystery particle, called the Higgs Boson I think, which will itself help tie togther the principles of Einsteins theory of general relativity and the standard model of quantum physics. Thus bringing harmony to the world of science and proof that the 'big bang' theory is right. I practiced this mini explanation of the (clearly far more complex) experiment on my wife before going to school this week, in preperation for the inevitable questions from the kids. I definately held her attention for at least 50% of it before she glazed over - as she does with all my favorite topics of discussion: geography, football, cricket, the poor state of party politics in this country... etc. I therefore considered this to be a triumph of scientific summary. So what of the consternation...?

Well, my eldest son has also developed an interest in the LHC. However, his attention was caught not by the science but the kind of media driven, gossipy hyperbole that school-kids love so much: "Dad, tomorrow they're gonna switch on a machine that will make a black-hole that will destroy the whole solar system..."! Firstly, I'd love to see his image of the 'they' who he thinks are going to switch on this machine... davros? blofelt? darth vader? Next, I wonder when he will develop that logical thought progression which will enable him to see the futility of anyone willingly creating a blackhole to destroy the whole solar system..."Yes, at the flick of this switch the planet and all her inhabitants will be in my control; that power would set me up above the gods..." SWITCH, BLACKHOLE, DISAPPEAR... "Doh". So having put him straight (Professor Brian Cox assures me that the chances of black hole creation are slim to zero, and anyway they would be contained by the magnetic field. And I believe him, so there), with my specially designed 'brief explanation of the machine' (TM), I sat back with a feeling of Dad-work done well. We then followed that understanding with some light-hearted riffing on the consequences of a black hole. All the while my younger son is listening in and, unbeknownst to me, latching on only to words such as SWITCH ON MACHINE... BLACKHOLE... SUCK IN THE WHOLE PLANET... DOOM... DEATH... MORE DOOM... TOMORROW TOMORROW TOMORROW... Cue one fraught son and at least 2 hours of constant reassurance. If Prof Cox is wrong, I'm gonna look a bloody idiot tomorrow.

All of which left me with one thought. If they can build a machine that replicates the origins of the universe in miniature, under controlled conditions, why the buggery can't one of these damn scientists come up with either i) a proper explanation why my bowels don't work properly, or ii) a better way of controlling IBD than intermitantly effective drugs and eventual surgery?


Monday, 1 September 2008

Hooray Hooray, its a holi-holiday

I've finally dragged myself out of my post holiday blues/torpor (with a twist of pre-school bumming-out) into some blogging activity. The holiday was great and did me the power of good - a fabulous mix of relaxation and adventure, with barely a thought of UC.
A brief summary then. Drove to Dover and got ferry to Calais. From there popped up into Belgium to visit some WW1 cemetaries around Ypres (an odd but poignant start to the holiday). This brief stop-over was somewhat lengthened by: a) the Belgians slightly haphazard approach to road signage; and b) the utter failure of my fellow drivers satnav to work in Belgium (I myself as a self-respecting geography teacher bloody-mindedly refuse to have a satnav in my car - its maps or nothing!) (apropos of that: I am also the worlds worst travelled geography teacher, hence this being something of an adventure)(but I do have good knowledge and a keen sense of direction. Promise.). Eventually, with a large slice of luck, we stumbled onto the road we were after and we were OFF! Drove on through Luxembourg (most of which was obscured by the most insanely heavy rain I have ever experienced in my life - I had to glue my self to the back of a lorry in order to stay on the road), back into France (long, empty toll roads), through Strasbourg, across the Rhine and south along the edge of the Black Forest to a little place called Sulzburg. Here we camped, although arrived with moments to spare before they shut the campsite. Early rise and onward south into Switzerland. Switzerland is the most fantastically beautiful country... with some hilariously serious people. Although I could have happily stayed in the swiss alps forever, we stopped only for a few hours and a fondue (mmmmm) in a place called Andermat. From here we drove over the Alps on the windy St Gottard pass, stopping to stare goggle-eyed into a huge glacial valley leading down into Italy. Then on past Lakes Lugano and Como and into Italy. Here the land flattened out onto the N. Italian plain, which was just that: plain. Around Milan and down to Parma, where we camped again. Up and out early again next morning and south-east past Modena (home of balsamic vinegar...mmmm) and Bologna (home of... ok we all know that) and then south down to Florence - from Bologna south Italy is beautiful. In Florence we spent a few hours wandering, experiencing a flavour of this lovely renaissence city. Then off again into the mountains to Florence's east and another campsite. Next morning we visited a monastry where apparently St Francis experienced the stigmata. Which was nice. Then on for the final leg south, past Perugia, finally stopping in a little farmhouse (on an organic honey farm) situated high on the slopes of the Tiber valley, under a little town called Giove, about an hour north of Rome.
Due to the nature of the trip down we felt under no pressure to do loads of sightseeing - just lots of relaxing around the pool (see pic above). We did get the train down to Rome one day, which was amazing (and stunningly cheap - less than 10euros per adult) and wandered into Giove regularly, frequenting all the superb local food shops.
A week later we came home. A different way. And slightly quicker. First we hammered up to Florence and then across toward Pisa and the coast. Here we encountered only the second traffic jam of the whole trip. Then I took a slight wrong turn so our car detoured through the city of Genoa (looked nice), and then up, up, up through the Val d'Aosta until we reached Mt Blanc. Awesome. Through the tunnel (expensive and dull) and then into Chamonix Mt Blanc, where we camped again - right on the foot of Mt Blanc herself. Hilariously somewhere between Genoa and Chamonix the bottom fell off the car and I dragged it along, haha. So that precipitated a visit to a french garage, where the mechanic was superb. Camping under Mt Blanc was spell-binding. It would appear I have developed a deep love for staring at mountains... After a morning of taboggining down the summer run on the mountain we hit the road again and slowly wound our way through the foothills of the alps and past Geneva and eventually back onto the french toll roads. Thus we sped up into the Champagne region and camped in Epernay. From here a short hop accross to Calais, ferry and home to cloudy Brighton.
So, what of the UC? Apart from a little hiccup (overindulging on tomatoes methinks) pretty much nothing. Which, sadly, hasn't been the case since I got home...