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.