The Geneva Convention

Well two weeks after the great infusion things are going well...actually things are going brilliantly. Unlike King Canute the waves of MS have retreated in front of the very presence of King Alemtuzamub. Sat invincibly on his throne, the great Alem Tu Zamub (as he surely would have been called in Ancient Egyptian times) has sent the numbness and the pineth of needleth running...ha, running I tell you.

The great vampire of Hertfordshire came and span my blood to check all was well. She even showed me how, like a medieval alchemist she could turn my blood into a clot, some gel and some liquid serum...then came the news...the serum doesn't go to LA with the blood, no...it goes to Geneva...wow, never been to Switzerland, sure I've eaten Toblerone but now I'm bloody well in Geneva.

That Friday feeling

10 minutes and we're out of here

Total Wipeout...

...sums up the mood for festival goers today... No more steroids (they don't want us failing a drugs test I guess) and plenty of Piriton, which now free to work without the constraints of the steroid uppers left me (in particular) in a semi dozing state most of the morning. I revived long enough for a couple of rounds of angry birds before succumbing to the rash again. I claimed I could soldier on until there was more rash than skin and I was beginning to look like the singing detective. Time for more Piriton.
And so a particularly unremarkable penultimate day came to an end. Tomorrow is the final countdown...the last day of Alemtuzub for this year...I feel a in tear coming on.

Rash Wednesday...

...started off as flat Wednesday to be honest. Our merry band of four were a bit flaked out..no one said much as obs were done, cannulas fitted, iv's attached and drugs pumped. Around about lunch time the pace of chat picked up...a bit of celeb gossip ( I met Posh n Becks in a furniture shop) followed by personal gossip (2 met partners through online dating...including the somewhat dubious sounding “toy-boy warehouse.com”...but I am the oldest so I'm probably out of touch with modern sexual trends.)
Excitement burst into life in the afternoon...North by Northwest (it's always him) spotted an air bubble in his line and rang the bell reserved for emergencies...well all hell let loose. Bells and whistles went crazy: 4 nurses, 2 neuros and a couple of crash teams appeared in about 10" flat....Jesus, what are they putting in us? Emergency over (actually the air bubble wasn't an emergency after all – thankgod we didn’t press for a cup of tea) things returned to normal until the emergence of a rash on me and N-by-Nw...quite normal said Moneypenny and pumped us full of 20 milligram’s of Piriton...don't worry 40 is an overdose so your only half way there...you'll just feel a little sleepppppppyyyyyzzzzzzzz

Day Two

Its hi-tech Tuesday here at the Alemtuzamub festival...North-by-Northwest asked why the Alemtuzamub pouches that drip chemicals into our arms were wrapped in kitchen roll. Well, they

react badly to direct sunlight of course was the answer. So this being such a hi-tech trial had they ordered in special reflective covers made at NASA for the Shuttle space programe? No, Asda twin roll absorbant kitchen roll (2for1) will suffice. Talking of drips, toilet time has become a waltz with the drip stands that hold the Asda wrapped chemicals as we make our way cross-corridor to the little room. They, the stands, have the same casters as Asda trolleys, rolling in every direction except the required one. And what's more there are only three wheelie stands for four patients so we have to time our bladders with each other. Don't let anyone tell you the NHS wastes money.

I shall get a little Zen on you now to finish day two...What's the sound of one man peeing with one arm attached by tubes to a stand that only has room to fit behind him? Bollocks, shit, ouch,
pissing hell, pissing floor

 

And we're off...

And we're under starters orders here at Clinical Research in this 'The Alemtuzamub 50000 Guinea Stakes'. Cockney Lady, Quietly Spoken Girl, North-by-Northwest and Davedandinfused look in great condition as they prepare for the starters signal....And we’re off...Cockney lady has made a good start... She's cannulated early, a good strong vein and she's holding her own nicely as the steroids are pumped in. Quietly Spoken Girl gets off to a solid start followed by North by North west and Davedandinfused brings up the rear. They're all up now...the steroids staying the course nicely...a lot of metallic taste being reported...but, oh dear, Quietly Spoken Girl has pulled up, she's feeling faint, turned a little pale there...the steward is in to check her...and she looking concerned but...she’s giving the all clear but not before North-by-Northwest and Davedandinfused have passed her on the inside. Great strength of character there from Quietly Spoken Girl. Now North by Northwest has stopped for a loo break...not for the first time...and now into the section of the race we’ve all been waiting for... Alemtuzamub by infusion for 4 hours...no pause for toilet breaks, athletes will take them on the course a la Paula Radcliffe...And this is a fantastic performance by Quietly Spoken Girl and Cockney Lady....barely pausing for a jacket potato...but can they keep this up...Cockney Lady is looking good for the win now...but no, Quietly Spoken Girl recovers from her early stumble to burst through on the outside....and there is the finishing line....Surprise winner Quietly Spoken Girl can barely contain her excitement...Cockney lady who led from the front has just been pipped at the post....North-by-Northwest comes in third after too many toilet breaks early on and it's a very disappointed Davedandinfused crossing the line last.
Well, plenty more action to go at this festival of Alemtuzamub in the coming days.

the last prick

Well I had it all planned out. Friday would have been my final injection. Two years, 312 syringes, 624 paracetamols (give or take a few). I had a bottle of bubbly on ice. My speech was prepared. I had it all planned out. With this prick I thee finish. The kids were going to cheer as I fired the rebiject (Mark II) for it's final journey. One more owch accompanied by a wide eyed stare for 10 seconds and we would toast the end of hamsters in our house and more importantly in my arse/thigh/stomach.

All I had to negotiate was the final pre-Alemtuzamub appointment 1 week before giving up my rodent addiction.
Then they ruined it. Moneypenny announced, casual as you like..."well no more rebif for you".
I'm sorry I said
"You don't take the rebif this week ahead of the trial extension to Alemtuzamub" reiterated Moneypenny as though that was obvious.
But I haven't given up yet. I can't just go cold hamster like that. I might get the shakes. What about the Champaign? And my speech. I had it all planned out...
Moneypenny shrugged her shoulders.
So here I am on a Wednesday without hamsters...not a prick in sight. Oh well, this time next week I shall be full of Alemtuzamub and couscous. No more hamsters. No more chicken pate. I think I'll open the bubbly.

The Scan

I'm just going to cannulate you
then we'll get going.
Pop up on the bed darlin’,
no, you can leave your shoes on
You'll feel a sharp scratch.
There, that was quick wasn't it?
Well that's the Gadolinium that shows up your brain
 - feels it bit cold doesn't it?
Now pop in these ear plugs...
You've done this before haven't you?
I'm just going to roll this cage over your face
and these little pads will keep your head still.
There, all ready to go.
You can see us in the mirror can't you?
and this switch I'm putting in your hand,
well squeeze it if you want us to stop

And then I’m rolled backwards into the cigar shaped cylinder. In the mirror above my head I can see a league of nations gathered in the office – out of reach and sound of these magnetic fields. The cannulating woman looks like she’s just stepped out of the Supremes with a 60’s bob to boot. She is talking to a little China doll who scribbles notes and the Irish girl who took my wedding ring for safe keeping is staring intently at a screen.

“Ok. The first scan will be 16 minutes long” The lady from the Supremes informs me (she doesn’t sing it) And then all of them gather round the screen. They are chatting and smiling. And then I start to get the feeling that they are actually checking flight prices on the easy-jet site.
“Hold still” she says into the little microphone that connects her voice to my ears. That’s enough to make my ear itch. A sneeze starts to build and I have the urge to cough. Violently. And I can guarantee one thing...I’ll need a pee very soon. The whirring, clanging, crunching sound starts, muffled by my earplugs. All I can see is the girls in their silent ballet as they flit from screen to screen to notes and back. The China doll is drinking a can of coke I notice. Suddenly there is silence.
“Good. The next scan will be 8 minutes” and the clunking, whirring starts up again and the girls go back to the bargain holiday website. Hang on...what’s this? Some bloke has entered their room...Oy, push off mate, these are my girls...how dare he...he’s flirting with them...and they’re laughing with him...damn if I could just get out of this metal cylinder...
”Perfect, the next scan will be 22 minutes” 22 minutes? don’t they realise what this blokes game is?....Oh hang on, he’s leaving...the girls are now laughing at the screen...if they’re not booking a holiday then they’re laughing at pictures of my brain....maybe it’s not my brain they’re scanning at all. Oh, no...the man is back and he’s bought a mate...I bet he has, I can hear the conversation now...yeah, we were wondering if you nice ladies fancied a drink after work...I’m going to cough, sneeze, itch, pee and fart simultaneously....
”Well done” Well done for what? I’m just lying here trussed up like a kipper while some junior doctors chat up my girls...
”One more scan to go. 14 minutes. Keep still” Keep still? I’m hardly going to break dance am I? Hang on...one of the men is now doing a silly dance routine and all the rest of them are laughing...they're scanning my brain waves...let me out....and now they are high fiving each other...for god’s sake they’re having a bloody party while a giant magnet takes pictures of my brain and transmits my thoughts in some Orwellian distopian nightmare...and then I’m being rolled out of the cylinder.

There you go, that’s all done
I’m just going to take out the canular
This will hurt a bit, there all done.
You’re free to go. Thankyou

Nothing to do with MS

Our schools are like a war zone. It’s a bit of a cliché and a bit of an exaggeration. But after last week I wasn’t sure how much. We were performing our show “Crime of the century”, a show about gang violence and disenfranchised youth, at an inner city secondary school. 120 fourteen year olds were our audience. Before you can get into the school we need to run the usual gamut of self locking doors, security badges, and more locked doors. The drama studio is unlocked for us. Once inside we find a well appointed space with raked seating on three sides. We bring our own lights - just a touring rig. The kids are marshaled in. There is much shouting from the teachers in an attempt to curb the volume of chatter from over excited 14 year olds for whom double science or whatever has been replaced by watching a theatre show.  Once in, a list of student names is read out. 20 students are bought to the front of the class. All except one…"he was excluded this morning Miss” says a brave boy. There’s laughter from two girls sitting near the front. The teacher is apoplectic. “You two have just forced your way onto the list. Come and join the rest of them.” All 22 (21 if you exclude the already excluded boy) have misbehaved on the way into the drama studio. We never hear how they have transgressed but their collective punishment is to be excluded from watching a show about how young people become disillusioned and divorced from their community…You figure it out. These teachers, good people I’m sure, were so busy excluding kids that they had forgotten to teach them.  “Our schools are like a war zone” is an exaggeration.  But if we’re not careful, some of our kids, in some of our schools will make education an enemy to be feared.  Told you it had nothing to do with MS.

Goodbye Shanghai

10 injections left. Yes indeedy. As of March 19 it will no longer be thrice weekly injections of the Chinese hamsters for me. They will be replaced (blood count willing) with - a 1 yearly, 8 hours a day for 5 days only - infusion of the mysterious sounding Alemtuzamub. This is not a recently deposed dictator from the Middle East. Nor is it a modal scale much loved by free form Jazz musicians. You don't take it with cous-cous and it won't clean drains. It is however the all singing, all dancing MS drug that I've waited two years for. It's 30% more effective than the Chinese and 60% more effective than doing nothing.

I can't say I'll miss the hamsters. Two weeks ago my applicator - a Rebiject MkII (automatic) in case you're wondering - jammed at the deepest setting. I didn't notice first time on account of my right bum cheek being largely feelingless. But oh boy did my left bum know about it. Half an inch might seem trivial to some but not to my bum. Bruised and sore (I hit a capillery apparantly) I was unable to sit comfortably for days. So, no...fare-thee-well my genetically modified Chinese rodent ovaries...I'm moving onto pastures new. Bring forth the Alemtuzamub....let's get it on.

Writers block

I'm back. I haven't been anywhere. I merely fell off my blogging bicycle and the longer I left it the more difficult it was to get back on. But the truth is I fell off because I had nothing left to blog...better to say nothing than talk about nothing. Trial world has been a bit dull really. The highlight of November was an exploding blood spinning machine. All was ok until a sudden "BANG" and then my blood was splattered Tarantino like onto the top of the glass roof. A splurge of red. What looked very impressive at high speed spinning, like a Dali-an expression of my illness gradually became a blob as it slowed down. A bit like my attempts at a potters wheel....at high speed it's a vase, then as it slows down it's a bowl, it's an ashtray, it's a shapeless lump of clay. So my blood turned out to be less like a Monet and more akin to a Pollock. That brings me nicely to my Vasectomy. You're right. Too much information. Somethings should remain unblogged...well, unblocked.

let's fly away

I finally finished my 2010 tour schedule with a quick flight to and from Edinburgh before driving down to Wales for the week. My carbon footprint is not good this year. I've flown over 20, 000 miles in person but my blood has blown that away with its monthly journeys totalling up at over 65,000. Bloody Hell. I wonder if I can retrospectively claim airmiles for my blood.

Talking of blood the vampire lady rang me the other day to confirm our monthly blood letting. And then she casually threw in that it would be a longer appointment because the Americans wanted to "check something" so she needed to spin my blood.
Check what?
"Oh, nothing"
How are you going to check nothing?
"It's all quite routine" she said
Well I beg to differ. Routine is what happens every month. Centrafugally spinning my blood for fifteen minutes is not routine. It's occasional. It makes me dizzy at the thought of it. My blood has had quite enough adventure this year with out throwing in personalised fairground rides.

die-caffeinated

It's been a long week
.... down to Whitechappel for the quarterly neuroteaser checks...Made a good start -  only got two questions wrong in the maths marathon addition competition. Put in a good showing in the short corridor sprint, but nowhere near my personal best and the 1/2K walk to Commercial Street has been replaced by an indoor version - the walking machine - not as pleasant but that's scientific progress for you. Leg tickling and pushing me over when my eyes are shut and I'm standing on one leg all went according to plan. I do love it at clinical research. It's like a surreal day out in a 60's Doctor About The House film. NeuroBond thinks my lax right leg is not a sign of exacerbations but a continuation of March's relapse which is comforting (I'm not imagining it) and annoying (6 months is surely enough lapsing). The rest of my time is spent waiting for Moneypenny to extract enough blood to satisfy the American pharmacutical company's vampirical lust.

Sitting and waiting is the perfect time to log on (it's a Wifi hospital) and catch up on e-mails. There's one from the blog marketing company who aren't making it easy for me to earn the full meal and west end show experience. The last two "job opportunities" have been for funeral services and a coffee shop in Vancouver. Even with my lateral sense of thinking and even after a bottle of red wine I can't make my blog meander through the subjects of death and coffee drinking in Canada (they also offer a selection of panini's and wraps if you're in the area) whilst living in London. But, with $12 at stake....

"I'm dying for a coffee....thought I'd try this new place in Vancouver...6,000 mile round trip taking three days but boy the coffee was worth it...on the downside all that coffee, travel and jetlag has given me hypertension...a great incentive to plan for my funeral...."

bum

My poor old legs have had enough of injections. They've got the needle. Or more acurately too much needle. Injection fatigue. They've had enough of feeling a prick. Two red blotches have grown wider and redder. My hither too manly hairy thighs have gradually taken on the look of a well waxed male model. Only it's not the look for a middled aged balding man with a beer belly...and certainly not just one large bald circle on either thigh. The bald circles, alas, mirror my head - where I've never injected incedently - and now I'm beginning to feel a percecution that entails every limb collecting a bald patch. Three down, two to go...is the head a limb? Anyway, Neurobond, who was on particularly good form at our recent Neuroteaser session says I should try my bum....actually he said buttock, but bum feels less scientific...so I'm no longer a leg man. Me? I'm a bum man.

up on the roof

Such is the popularity and quality of this blog that I was contacted by a digital marketing company who offered me money to write the blog. It was all very simple and went something like this....They would match companies seeking blogs on their subject matter to my blog. So if Asda were hoping to increase interest in their new range of health insurance this comapny would let me know, I would include discussion of health insurance in my next posting, mention that Asda were great, Asda would pay the company and the company would pay me. Mine being a health blog meant I would be matched to companies interested in health issues. Easy. How much was the big question? How much? $6 a post was the life changing answer. But hell - despite the disingenuous nature of covertly using my real life blog to advertise products for my own financial reward - 52 posts a year at $6 a post would pay for a romantic meal and a West End show for me and the wife. Happy days.


The difficulty of having MS, I find is when you want to use interlocking roofing tiles. I guess it’s the numbess in my fingers that mean my choice of interlocking roofing tiles is a new company called Avernex. It’s reassuring to know that when I’m replacing the roof I can easily interlock the roof tiles and get off the roof quickly before I suffer a relapse or a dizzy spell. So if you’re suffering a long term illness and thinking of replacing your roof I suggest you consider interlocking roofing tiles. They really do interlock and go on the roof.

That’s a prawn cocktail in the bag.

no flies on me

The advantages of having MS just seem to expand all the time. Once again the hot Mediterranean country of Spain has shown the way forward. Not this time the joys of walking unhindered down red hot asphalt paths without feeling the burning sensation in my feet. (see post 18/08/2009) This was far more practical and handy. Flies. Yes, flies. It happened when we went to visit friends in Marbella. We took the coast road down from our regular haunt of Nerja down to the luxury resort arriving in time for a splendid bar-b-q and a large, thirst quenching cocktail. Bliss. "If it wasn't for those pesky flies" said everyone as they swatted the damn things every time they landed. Everyone except me. What flies? "The two walking up your right leg for a start". Sorry, my right legs an authentic registered spastic and does not recognise, feel or notice insects alighting on it. So there we have it. Spain is where MS sufferers should move to and enjoy the freedom of walking bare foot on hot roads and the pleasure of bar-b-q's without the annoyance of flies bothering you.

Still singing

Well shout it from the roof tops or whisper it quietly  - I feel good and have been for several days...this weird disease has dissappeared for a while...and while the cats away the hamster has fun...but should I  be shouting or whispering?....shouting feels like it will invite a problem...I always worry about this...you see, down at Tottenham, when we take the lead against another  team we start singing very loudly....”you’re not singing, you’re not singing, you’re not singing anymore” followed by “you’re shit , and you know you are”. Now I know that at some point later that afternoon 5000 away fans are going to enjoy rubbing our faces in that...so is it better to stay schtum and avoid the humiliation of reverse baracking or enjoy your moment in the sun?....Well in this case I’m reasonably sure that no one is going to revel in screaming “MS is back, and you know it is”....So whisper it loudly is today’s maxim....”I’m ok and you know I am”

Spaz and Edss

There is something in the MS trial world called “expanded disability status scale”. Edss for short (as though you have a lisp and a friend called Ed). In the world of EDSS a zero is absolutely fine, A OK, top of the world. The scale gets progressively worse until ten . You don’t wanna be a ten. Ten is dead. When the missing blinded assesor reappeared after his absence we set about testing my EDSS. We walked on the walking machine, we stabbed sharp and blunt instruments into my limbs and we generally scraped soles and banged knees with hammers, tuning forks and the like until he had a score.

Now, growing up in the 70’s, a world away from the political correctness of now we had an all purpose insult in the playground....spas, spaccy, spazoid, spastic. It covered all the ground from “Hey, spas pass the ball” to “Spaccy, give us a lug on your fag” and of course “Carey is a total spastic”. Now I know that’s deeply unkind but it didn’t seem so to 13 year old boys in 1977. A spastic was just a plastic boy with a gammy leg outside a charity shop. Besides, you couldn’t catch spastic, you couldn’t become a spastic. Now I know different. Blinded assesor tells me i have “significant spacicity” in my right leg. Are you telling me my right leg is spastic? Well he tells me I’m going to have to put you down as a one. So there we have it. I’ve still got nine lives left and Carey may not be a total spastic. But his right leg’s giving it a good go.

Pear Shaped

The highly efficient service that has characterised life in Clinical Research came spectacularly off the rails today. My 15 month appointment was set for 8am (that is apparently a legitimate time in the morning). To be at Clinical Research for 8am means leaving North London at 7am which requires getting up at 6am (in my books that is not a legitimate time. It's a bastard of a time). Then it turns out that the blinded assessing doctor who is due to make me hop, skip and jump before enquiring about my sex life is stuck in Colchester. Colchester is a Roman town. It's a straight road to London and he's very fond of making me prove I can walk in a straight line. But not today he isn't. Everyone is suitably embarrassed. NeuroBond can save the day. He is my unblinded doctor for the day. Due at 9am. Then it turns out NeuroBond 'doesn't like mornings'. So he'll be late. An hour late. What's going on? No blinded doctors, no sighted doctors. Even Moneypenny is missing. New nurse is offering me coffees and teas (probably an attempt to get me to wee in the sample jar). But it won't wear with me. She takes my blood, and eventually the piss before checking my blood pressure. It is apparently 'quite high'. Deep breath. Calm.

Fab 1

Sunday saw us hot footing it down to Hyde Park for 'Hard Rock Calling'...50,000 people (including me and Fi)...and some bloke called Paul McCartney. It was hot...hot beyond belief...the afternoon started with Elvis Costello. Unfortunately for Elvis he had to compete with England v Germany which in the wisdom of the organisers was shown on the big screen while Elvis worked his socks off....Now I've performed to many a disinterested audience...but none have roared with excitement in the middle of one of my biggest hits because England have scored...fortunately I've never had a biggest hit and fortunately for Elvis England only scored once.

Crowded House had the unenviable task of lifting the 20, 000 crowd who were now collectively 4 - 1 down and fed up. But let’s be honest - sun, beer and always take the weather is such a winning combination that Footie suddenly seems like a pointless kick about between 22 overpaid teenagers. (I'm not bitter about England crashing out of course)
Crosby Stills and Nash looked like we expected...but bless 'em, they sounded like heaven (bearing in mind we had consumed large quantities of beer by now - all in the name of staying cool and hydrated...yeah I know)
Then the man came on. The big Macca. Well if I had a back catalogue that included most of the 60's and 70's greatest hits I'd be confident...besides I've always been a Lennon and Harrison man...I mean they never wrote the Frog song....but eat my hat, sit on my hands, consume large quantities humble pie...he rocked, he rolled, he blew 20, 000 people away. He sang with a band, he sang on his own, he delivered hit after hit after hit after....after all, he was one of the f'ing Beatles...