Sunday, 20 December 2009

My (insensitive) Left Foot

Back to Clinical Research for the quaterly check up. The usual selection of hop, skip and jump. The walk up and down Whitechappel was brisk and cold but proved that I can still walk. My eyes which were 20:20 two weeks ago at the local opticians became a blurred mess for precisely the lengh of the eye examination (for reasons best known to my optic nerves). I couldn't tell the T's from the Y's and then they turned out to be 7's anyway.

The balancing test is always an each way bet with me. Balance has never been my strong point...sober, drunk, pre or post MS...I've never got the hang of it. I am quite capable of falling off the floor, so what chance do I have with eyes shut, standing on one leg with a doctor pushing me?

Down to the hitting me with a hammer (reflexes fine) and then the stabbing me with a needle..ouch-ometer is fine, yes it hurts...except...there's a pause from the left foot is "not behaving" doesn't hurt...several stabbings later and my foot is "not reacting correctly". It has less feeling than last time and is marked down on my chart. So next time I put my foot in it remember, it's insensitive.

Tuesday, 15 December 2009

Half hour call

Such is the lot of the theatre pit muso that the half hour call means half an hour to inbibe a quick drink before treading the path of least resistance to the band pit. The pit in our theatre is marooned from an exit. The only way out when you're in is through the audience or across the stage. Neither of which is desirable in the middle of a show. It means a certain amount of forthought.

1) Never fill your bladder beyond the length of the first half.
2) Never contract food poisoning before entering the pit

Added to this has been a most unwelcome bout of IBS, which anagramatically combined to give me BIMSS. And that is quite descriptive of how my stomach has felt. My Doctor said it was stress related...have you experienced any life changing events in the last year, eighteen months? Well yes, if you remember you diagnosed me with Multiple Sclerosis. Ah, yes. That's stressful enough.

So now you see the relevance and indeed fear of a no escape pit. But I have found that just the right amount of red wine combined with just the right amount of gaviscon does the job quite succesfully. We've just had our 5 minute call....last chance for the loo.

Sunday, 6 December 2009


Struggling to write anything interesting. Felt shit for two weeks now which is dull reading. Ill's not funny. That's different from I'll not be funny. What a difference three letters and an apostrophe placement make. One's a choice, one's a pain.
There we go...I'll be smiling tomorrow. Which is different from I'll be milling tomorrow.

Sunday, 29 November 2009

All the World's a Stage

Last week was an appointment with the new vampire but at the last minute a "must do" meeting at the Hackney Empire came in.  Never mind said Ms. Dracula, I'm in Dalston for an earlier appointment, I'll meet you at the Empire. I should have had my suspiciouns. The new phlebo was called Sally Diamond. How showbiz can you get? I expected tassles instead of a fob watch.

The only spare room at the Empire was the studio theatre. The only usable seats were on the stage as part of the set. In the room above the studio theatre was the band room and a bad ass band for the Hackney Christmas show was rehearsing. Damn they were funky. And so me and Mrs. Diamond sat, positioned infront of an imaginary audience drawing blood and checking pressure. And then the band joined in.
There'll be a sharp prick said nurse as she puntured my arm.
Can you feel it? played the band upstairs.Can you feel it?
Then she asked about the injections of rebif chinese hamsters.
The band cracked straight into Level 42's seminal hit Chinese Way complete with unfeasable Mark King baseline. As Ms. Diamond dropped a pippets worth of my blood onto a slide I was convinced she was singing along. And then she definitely shuffled her feet choreographocally as she returned with a theomometer.
Hot in the City, hot in the city tonight filtered down from the room upstairs.
If all the world is a stage then it's a full blooded musical. Directed by David Lynch.

Sunday, 15 November 2009

Cold Feet

My cold feet were back last night. I woke up with frost bitten toes and then couldn't warm them up how ever many layers of quilt I trapped them in. Foreigner (Cold as Ice) got stuck in my head and sleep slipped away til dawn was up. We were down to one offspring thanks to a sleep over party of yesterdays "best friend", tomorrows "I hate her" and next weeks "bestest ever friend", so me and the youngest, just the two of us (without Bill Withers) had a quality breakfast together. By the time I had the papers in front of my eyes my toes had melted and all aches had decamped to my arms. It's probably a sign of stress.

Tuesday is our big fund raising gala at the Royal Albert Hall. The last time I played at the Albert Hall I was a sprightly 20 something playing with a succesful, all be it aged pop band. I've always suffered nerves before performances. People say that it's good to get nervous - it channels the adrenaline. Rubbish. I've never understood how to channel anything. It just makes me feel sick. And if there's nothing quite like a super-sized venue to bring out the cold sweat of fear then there's nothing like the stress of fear to bring out the numbness and tingling of MS. Or maybe I've just got cold feet.

Sunday, 8 November 2009

Conceptually Speaking

Feeling full of health and with a bounce in my step I headed off to watch the mighty Spurs play against Sunderland. If there is anything more guaranteed to trigger an exacerbation of symptoms it is watching Spurs play. Nearly two hours of sitting in the cold watching the most stressful team in the Premier League hoof the ball around in search of the beautiful game. They didn't disappoint me. They stumbled around, misplaced passes, scored an offside goal, gave away a penalty, saved the penalty, scored an unlikely second and held out for a home victory that propelled them into forth spot and me into numb hands.

Then it was off to meet my brother for a spot of conceptual art at the Tate Modern. If my MS was an art form it would be conceptual. It wouldn't be renaissance...too precise. It wouldn't be impressionism...too gentle. It might flirt with the randomness of Pollock. It would have a passing nod at Dali's weird surrealism and sometimes the insides of my arms feels like a Hieronymus Bosch. But no, when all said and done, to me it is conceptual. It is like a temporary installation - but one that reappears when you least expect it. And then it leaves you scratching your head thinking "what the hell is all that about then".

I'm warming to this now. Next week I shall consider what 20th century music MS would most resemble: Stravinsky's poly-rhythmic dissonance of the Rite of Spring or the Osmond's Crazy Horses?

Thursday, 29 October 2009


Nothing of interest has happened to me in the disease fighting world this week. A healthy week all around. I've been fine. Totally ok. So let me tell you about my friend Samuel. He's fighting a really nasty disease. His disease is Robert Mugabe. His disease has already killed members of his family and robbed him of his home. I've been recording his story now for several months. By day he pretends to be a janitor but like Hong Kong Phooey he is really something totally different. Just as mild mannered though.

Born in South Africa to Rhodesian (as it was) migrant workers he lived in the townships of Soweto (Zone 12 he tells me). On June 16th 1976, aged 13 he walked to school as the Soweto uprising raged around him. His parents moved him to the relative safety of Rhodesia that Autumn to live with his Uncle. In November he attended a rally where Joshua Nkomo implored young people to leave Rhodesia, seek an education in exile and be ready to return to the country as the rightful majority rulers. The following Spring after borrowing money from his Uncle on the pretext of buying training shoes he bought a bus ticket to Botswana and began the long journey into exile. He was determined to change his countries fortunes - to over turn the minority white rule of Ian Smith's government. From Botswana he went to Zambia where under the guidance of Zapu he was educated, first in Lusaka and then in Sofia, Bulgaria with members of the young ANC.

He returned to the new Zimbabwe to discover Mugabe and his Zanu PF had prospered where Nkomo's Zapu had failed. For him and many others the freedom that revolution and independence were supposed to bring became a nightmare. Members of his family, including his beloved Uncle were rounded up by Mugabe's dreaded Korean trained Fifth Brigade. His uncle was found dead at the bottom of a mine shaft. Samuel fled to the relative safety of South Africa - a country ruled by the apartheid policy of the National Party.

So when I'm feeling sorry for my self about a bit of MS I go and chat to Samuel.

Thursday, 22 October 2009

The terrorist within

Why is it always a surprise? It shouldn't be really - it happens often enough. But its the same every time. For some reason after two or three weeks without any sign of the ms its just a complete outrage when it reappears. Of course you don't really think it's gone...but you can never really remember what it feels like to have that numbness creep down your arms until it creeps down your arms. At that point I tend to say...aahhhh there you are.

Or am I'm beginning to personalise the ms too much? Shouldn't I remain in defiant anger with it? I should of course refuse to negotiate with it until it withdraws completely from my body. Or perhaps it's time to talk to it. I could demand a phased withdrawal from my arms (the ms equivalent of disarmament) before I would discuss terms for peace. Of course I would have to agree not to inject hamsters whilst discussions took place. There would be an agreement to allow an MRI scan under the watch of UN monitors. There would then be much diplomatic coming and going (probably in Norway) whilst we agreed the terms for a ceasefire. But then no doubt one of us would break the conditions. Some rogue element would remain in my hands ready to attack....and would I really trust it enough decommission my syringes? Surely I'd keep some in hiding at the back of the fridge.

Maybe I am taking this too personally after all.

Friday, 16 October 2009

Got to get up to get down

What is the correct etiquette for giving up your seat? We had a right old game of musical chairs on the Tube the other afternoon. The walk from Northern line to Central line at Bank is a ridiculously long one followed by loads of stairs up, and up and up by which time my legs were feeling decidedly shaky. I've been very healthy this week - I've been in Moscow so it's probably the vodka - but when my leg, especially my right leg goes numb it's a pain in the arse. Well...slightly lower to be more accurate. So it was a relief that I could find a seat on the Tube. Then some old lady with a walking stick gets on, so I feel obliged to get up. Next stop an even older man with stick gets on. Two people simultaneously get up for him leaving me with the chance to take one of the newly vacant seats. I get a slightly dirty look from the now standing youth that was being generous to the old man with stick but not to the middle aged man with shaky legs. What are the chances of this though...? At the next stop an even older lady but without a walking stick gets on. She stands staring at here's the she old enough to get the seat? Do I have enough MS to keep the seat? Is my MS visible enough to let other passengers know I'm not being a selfish bastard. As the door starts to shut I can take it no longer...I get up...the old lady gets the seat.

Saturday, 10 October 2009

Bloody Good Riddance

Now it’s all kicked off...the phlebotomists have been sacked and a new company of phle people bought in. I’m not surprised. The last vampire to visit me may have arrived on time but...

I haven’t got my kit with me he says

Now when I was a kid if you forgot your PE kit you had to do the gym session in your underwear...and let’s face it at the age of 7 it was no big deal. Now call me old fashioned but the idea of blood man taking three phials of blood, and various other readings dressed in his underpants wasn’t appealing. Then it turns out his “kit” is pretty much everything he needs except the clothes. Needles, thermometers, gloves, steri-wipes, test tubes, glass plates for doing weird stuff with. You name it he didn’t have it. It was a bit like me turning up on stage and realising I’d forgotten a keyboard. Which all joking apart did actually happen once. Very embarrassing...had to leave stage, go back to dressing room, get the keyboard, return to stage, plug it in....

I digress, so anyway phle-man says...Do you mind if I nip back to the office and get my kit. Quite what the alternative was I’m not sure, it was hardly a case of some hot water and towels sufficing.

Of course say I...where is the office?


Hammersmith? Hammersmith is an hour drive each way in a post apocalyptic London where all other vehicles, traffic lights and speed cameras have been destroyed. By now it’s 45 minutes to rush hour. I’ll be lucky if I see him tomorrow.

And now it looks like I’ll never see him again. So farewell inefficient blood suckers. Let’s see some phlebotomists with some real bite. Tomorrow I go to Moscow and when I return the new company will take three phials of vodka from my veins.

Monday, 28 September 2009


It was accidental but I suffered a malfunction with a couple of injections last month. I loaded one of them inaccurately and it just went phut in its cylinder. The second time it went phut outside the cylinder but inside its cap. The resulting high pressure acted like a hydraulic pump and sent hamster ovaries flying across the room. This flying medicine landed in my daughters open mouth. Her mouth being open in shock because I was screaming "fuck, fuck, fucking hell." I'm hopeful that she has now been immunised against MS and that she doesn't repeat the phrase at school tomorrow.

I explained all this to Clinical Research. (the malfunction - not swearing in front of my 7 year old) ok they said that's two shots wasted.

Well I wouldn't go that far I said. They weren't wasted, they were just...not....successful.

That is what we'd call wasted said Clinical Research. You have wasted them

Wasted sounds intentional I said This was more a case of premature injection. It can happen to anyone.

New Nurse was unsympathetic. Wasted she wrote in her report.
And so it was. I guess it's all a case of semantics. Once upon a time I used to buy drugs and then take them to get wasted. Now I'm given drugs and when I fail to take them, they're wasted.

Friday, 25 September 2009

Cycle of life

Trial time. When the assessing doctor says how is your walking? I say fine. When he then says...can you walk for a half a mile? I say yes again. And that is where we leave it normally. It's a mutual trust thing... Can you walk half a mile? Yes. You don't expect him to say...prove it. Let's go. And so there we were walking down Whitechapel half way to Liverpool Street and back. I refused to answer the erectile function question.

This was the six month test. This was boot camp. This would sort out the men from the ms. It was all change at Clinical Research. NeuroBond was gone. Either eliminated by Sean Bean or "retired" by his own operatives. Maybe his license to interpret MRI's had been revoked. We weren't told. Nurse MoneyPenny was "on annual leave". Suspicious eh? Nurse Blofeld remained, needle in one hand, paperwork in the other....whatever had happened, Clinical Research had changed. It's usual European efficiency was over. Replacing it was the unmistakable whiff of Monty Python. Clinical Research had gone comedy. EU doctors with preposterous accents were out and well spoken public school alumni with preposterous accents were in.

Dr. Miles wore a red bow-tie. Hi he said these neuological tests can be a bit humiliating so I find it helps if I join in. When I ask you to hop, I shall hop with you...and so he did. We hopped together, walked on heels together, tip-toed together...we walked down corridors together. We gazed at eye charts and added sums was a love in of neurological proportions.

By the time we got back from our walk to Liverpool Street it was time for New Nurse. New Nurse was under instruction from Blofeld. With Blofeld's record of spilling my blood this could have been worrying but New Nurse broke all records. She was the best blood taker. Subtle, underplayed needle invasion followed by excellent casual chit chat while she secured the requisite eight test tubes of blood from me. Terrific needle exit was followed by perfect plaster placement. This nurse knew her shit. This was English efficiency. This was a system we could trust in.

Blofeld came in to check the paperwork. Did you mean to put his date of birth in the 'last menstrual cycle' box?

Friday, 11 September 2009

The percentage game

I'm six months into my trial comparing Rebif and Campath. Which for me means six months of Rebif. 78 injections. 78 Chinese hamster ovaries. Plus a combined total of 156 paracetamol and ibuprofen tablets. Should've got the Boots Advance card. I'd have enough points for a hot water bottle by now.

I was explaining this to someone the other day. (not the hot water bottle) So is it working? they said. Good question. Is it working? The theory of Rebif is that it won't cure you. It will reduce your symptoms and relapses by up to 30%. Which means it's really rather difficult to state that it's definitely working. How bad would I be without the hamsters? As I haven't had a relapse since I started does that mean the minus 30% has occurred already? Am I 70% more likely to have a relapse now that I haven't had one? Two fingers in my left hand have been numb for some time now. Is that just a 20% success rate? Actually 7 numb fingers would make more sense. Then it would be obvious that the 3 feeling fingers were a 30% direct result of the 3 injections a week. How do I work out the maths for 2 numb fingers being 30% better than they would be without injections? Would a third of a third finger be feelingless? Or should I have a numb thumb?

Am I get getting 30% less sleep because I'm 30% less fatigued or am I getting 30% less sleep because the injections give me insomnia? Am I 30% less likely to forget what I'm talking about? Now that is the question. And the answer is as confused as the question. I think.

Friday, 4 September 2009

In pieces

Well we finally bit the bullet and booked an impromptu week in a caravan somewhere in the midlands. It was very last minute. Fiona and I returned from our anniversary weekend in Edinburgh at about midday. Maybe its because I haven't been at home for most of August but we immediately got itchy feet... wouldn't it be great if we could just go away again said Fiona...and so while she popped over to the shop to buy a loaf of bread I logged on. By the time she got back we were booked to go. You know that was a flippant and rhetorically wishful statement that didn't require credit card use she said..Too hour later we were on the M1 heading up country to a caravan park.

Now caravan parks are...well...parks with caravans on them and this one was largely inhabited by skin headed men with union jacks fluttering from their caravans and Staffordshire bull terriers straining at the leashes held in their hands. It was an English Deliverance without Burt Reynolds. As I drove in I could hear the banjo.

You know it was definitely a flippant and rhetorically wishful statement that didn't require credit card use she reminded me. It'll be fine I reassured her. The sun's out. We're in the country. Plenty of room for the kids to run about in the country sunshine. Lovely. Then it started to rain in biblical quantities. Ten minutes later and there was a hurricane strength wind to boot.

So what do you do in a caravan in pouring rain with gale force winds and the assembled cast of the English Deliverance peaking though their net curtains at you? A jigsaw of course! That is true caravan behaviour. Rain, wind, cup of tea and a jigsaw. A 1000 piece humdinger of a jigsaw that took up half the floor. It took us half a day to find the edges. I became obsessed...early morning to late evening I was on the floor looking for the piece with half a green leaf against a blue background...and that it how I lost the feeling in my left hand. Hours of sorting through puzzle pieces whilst leaning on my left hand led to pins and needles running up from my wrist into my fingers. It'll go when I stop puzzling I thought. It didn't. I stretched my fingers. Give it five minutes and it'll be gone. Only it didn't go away after 10 minutes. Or after 10 hours. It's been five days now and all feeling in my left hand has buggered off.

We survived the Deliverance but I may well have invented a new MS exacerbation. Jig Saw wrist.

Tuesday, 25 August 2009

Part Two

In the interests of a fair temperature comparison I left Spain and went to Scotland. No chance of sun melted asphalt paths there. No burning feet in Scotland. Damp feet, foot rot and hypothermia possibly but not burning feet.

I bought all my needles with their passports and still no-one checked them. It was gratifying when a novice monk in front of me at airport security was pulled over and asked to explain the 7” Bowie knife in his hand luggage. I suspect someone of any racial origin other than white wouldn’t have been offered the opportunity to explain it but there we go. The monk with the knife claimed a hunting hobby and his knife was duly confiscated and he was allowed on to the plane. Is there a conflict of interest there? Praising God whilst hunting his creations with an effing huge hunting knife...

I was in Edinburgh for the festival where a show I had worked on was playing at the Zoo Southside. At the theatre (converted community centre (itself converted from an old school)) I met the wife of our venue marketing manager who has...MS. Blimey, we got on well. Swapping stories of numbness, pins and needles, drugs, infusions, memory loss and the like. We sat like a couple of gossiping old ladies..did your neuro offer you Copraxone? No, but does your nurse answer her mailbox? Doesn’t it annoy you when you’ve got fatigue and someone says..I’m tired as well Yes and do you ever stop mid sentance and forget what you meant to say next? And thus we went on, like we’d known each other years.

She (the marketing mans wife) is a strong lady who’s up for the fight and that is inspiring. So, in what is a simple post about simple pleasures I would like to state for the record a second positive effect of owning Multiple Sclerosis. Along with asbestos feet in Spanish water parks I will add...meeting nice people that you wouldn’t otherwise have spoken to.

Tuesday, 18 August 2009

Reasons to be cheerful (part 1)

After 18 months I have finally found the positive. And I shall accentuate the positive. In fact I shall compile a list of positive outcomes of owning MS. It may be a short list, but it will be my list...unless of course anyone else will add to it...which I would welcome. Florida Dave Carey is devising the MSers guide to Orlando and I think the top ten MS symptoms to rejoice about might prove a useful it goes like this...

Our annual family vacation to Spain occurred last week. We always head for my late fathers house in Nerja. A beautiful area of the Costa Del Sol where the children swim with abandon and adults relax with a San Miguel and a fish kebab...Now the highlight of this week is the trip to the water park in Almunecar. A sprawling complex of thrilling water slides and thunderous tunnels using sea water and more San Miguel. The down side to this trip has always been the red asphalt path that leads from slide to slide. Cos it gets hot, I mean effing hot. The sun heats it through the day until it's the equivalent of walking on hot coals. British tourists are always spotted by their ridiculous owch–hop–skip–hop–find the shady bit of path–dance. The Spaniards of course stride slowly and lazily across the burning red path with a nonchalance that we Brits could never conjure...until now. And conjure it I did. I knew my soul had lost all feeling (what a tragic statement, I’ll start again) I knew my soles had lost all feeling some time ago when the French Neuro-tester devised the stabbing test. Am I stabbing you with the sharp end or the blint end? he would say. All was fine until he came to my feet when it became apparent that I wouldn’t notice a Scimitar slicing through my old plates of meat let alone a broken cocktail stick (it’s a high tech trial, I can tell you)...but lo! What joy my numb feet bought me in the water park in Almunecar. I strolled, I dallied, I nonchalantly hung out on the boiling red path. I smirked as even a Spaniard winced at the Mediterranean heated asphalt course. next time your wondering what to do with your numb feet....get on a plane to Malaga, drive up the coast to Almunecar, visit the water park and look smugly around at those people doing the hop-owch-skip-owch-find the shady bit of path-dance.

Wednesday, 5 August 2009

In Pilot's hands

So, interesting things abound and while my MS sleeps, my guitar gently weeps. That's a lie. I don't play guitar but you can never tire of quoting fab four lyrics. (my brother will explain that lyric is a plural and thus the last sentence made no sense but sod it, I'm feeling reckless). What brings the recklessness on? Well the thing is that many things occur in the MS world....

First, I am issued with a passport, yes a passport, for my Chinese hamster medicine. (no photo required). I have to travel by plane a lot this Summer/Autumn - this is in itself a shame as I hate flying. No, it really scares the bejesus out of me - but Edinburgh, Spain, Edinburgh, Moscow is the quite frankly unlikely list of jet setting destinations that I will be leaving my life in the hands of pilot's for. Now without my passport people might assume I intended to attack flight attendants, inject them with rebif and delay their onset of secondary progressive MS. This could become a new strand of terrorism, maybe a medical terrorism. Doctors could board flights and give passengers Tami-flu (Not Tami-Wynette, I'd worn them of this mistake) or a heavy dose of 'night-nurse'(TM). I realise this could be subject to abuse...

Now along side this, is a warning, about flu. The hamsters are it seems, an immune suppressant. Now when your immune system is suppressed you are more likely to get flu...swine, man, common, matters not which one...but, here's the cunning plan (bear with me). The side effect of the hamster injections is flu like symptoms...which we combat with paracetamol and now, all you users of immune suppressants...are your flu like symptoms a side effect of your immune suppressant or merely your immune suppressant working effectively? I leave it in your hands, which, I should remind you, the latest government guidelines suggest should be washed.

Saturday, 1 August 2009

No country for middle aged men

Discovering I had MS relatively late in my life is one thing. I was 43. It was late onset of MS. Far worse, far more sinister and altogether disturbing has been a recent development. Late onset of Dolly Parton. I know when it began. Beth had to use '9 to 5' as part of her reception assembly. I downloaded it so she could practise it in the car. Wake up in the morning...I have always hated country. But then i-tunes offered to download the rest of Dolly's hits for £3.49. Bargain. Jolene, Jolene, Jolene, Joleeeeene, ...please don't take him, islands in the stream, that is what we are.

What was going on? I was listening to, I was singing along to Dolly in the car. And iyiyiyiyiyi will always lurve yohooooo.... Fortunately it hadn't developed into full blown country. I could still take refuge in Blue Oyster Cult's Don't Fear The Reaper (digital remix). For every 'coat of many colours' there was still a 'Kashmir', for every 'Backwards Barbie' there was still a 'Wish you were here'. I could be strong. I could be anti-country.

And then it went really wrong. Badly wrong. Someone gave me a Jonny Cash album. And before I knew it I had developed full blown country. I tried to buy some Tami-flu but in my confusion I came back with Tami-Wynette. It was frightening. I was short of breath. I started referring to my wife as Lucille. I sent my kids out to work the range. I was offered a trial of Punk but I got randomised to opera. Perhaps middle aged men need country. But I do draw the line at Billy Ray-Cyrus and his daughter.

What d'ya mean he recorded 'Achy Breaky Heart'? Count me in.

Sunday, 26 July 2009

Let's (not) dance

It started during a performance of improvised Japanese contemporary expressive dance. I should explain. What started was my own personal heat wave reminiscent of the great Summer of 76. I was a drought area by 8:30pm. I was on fire. Head to toe. The Japanese contemporary expressive dance thing is more complicated. It was an odd thing to attend and I've probably damaged my children for ever, but attend we did. We came, we saw, we perplexed.

Look, there was a time in my life...I was younger...when (I believe the phrase is) I experimented with mind altering drugs...I was reading a lot of Aldus Huxley, listening to a lot of Pink Floyd and generally discovering things that could make me dance when god alone knows...I hated to dance. It was social phobia overcoming drug therapy with the possibility of a date at the end of the evening. The only trouble was identifying the end of the evening. Anyway, back to the point. This all new MS symptom was a heat rush that was tangibly reminiscent of those heady days. Only it wasn't any fun. It was just a rush of heat with nerve endings exploding and my body heating up from the inside out. A bit like being inside a microwave...although that is, I hasten to add, a guess. Don't try it at home home in order to contradict me...I believe you.

The thing about the Japanese expressive dance thing was that it was more like a mind altering trip than anything I've experienced for 20 years. Particularly when combined with the rush. Dancing across the stage a lady appeared with a large lump of dough attached to her face which she then began to pull apart and throw at the audience. I began to feel a deep seated and uneasy sense of familiarity. A performer that gradually taped herself to a chair with garish red duck tape took me right back to the late 80's. Gradually it all began to blend. MS, LSD, E. It became some weird anagram. I love anagrams. When I've worked it out I'll let you know. Meanwhile I will not dance, expressively or otherwise. It's too dangerous. Thankfully the heat rush subsided after a short intermission. In remission (t).

Saturday, 18 July 2009

Can't sleep, won't sleep

Fear of insomnia...that's what keeps me awake at night. I used to sleep so well. Midnight, snoring, nothing could wake me. Phones, alarms, children...once in the land of nod I was there for keeps, well, 8 hours. Yet I was never one for over sleeping. I liked to be up and about in the morning, not idling by the hours til lunchtime. Yes, sleep was an ordered pleasure.

But not so now. It could be the MS. It could be the hamsters. Sometimes it's the hands on fire, sometimes it's the pliers on toes and sometimes it's just...wide awake time. But whatever it is, something wakes me regularly, however tired or fatigued I may be. Whatever time I hit the sack I'm awake sometime between 3 and 4. And there is a whole strange world that goes on between 3 and 4.

The cat for instance, can hear me coming up the stairs (yes, our house is upside down) from three gardens away. She can be through the cat flap and by her food bowl before I've reached the top step. If perchance I decide to turn over and hope sleep returns the cat has other ideas. Yo, Dave! Wake up, Come on, I'm upstairs. Come on Dave. You know you're awake! Stop fooling yourself... All this is said in a wild miaow that sounds like the onset of being possessed in a sequel to the exorcist.

Talking of being possessed...youngest child at 4 in the morning. She sneaks ever so quietly in from her perfectly adequate single bed to make our double over crowded. Then she has the ability simultaneously put her feet in your head, back, face and chest whilst stealing the quilt with a devious slip of the elbow. Whilst we sleep vertically she gradually turns horizontal until I'm reduced to lying on my side, balancing precariously on the outer 3" of the mattress. Enough is enough and I decide to take my chances with the possessed cat.

Now I'm upstairs I may as well do something...I know I'll switch the computer on and get on with the blog...What shall I write about? I know...Fear of insomnia...that's what keeps me awake at night.

Monday, 13 July 2009

One hand clapping

What is the sound of one hand clapping? goes the Zen riddle. Of course there is no answer to a Zen riddle, just the pursuit of enlightenment. Somehow, I didn't know for sure, but I suspected, Buddha wouldn't be at the National Indoor Arena today.

'Stick it to MS' reached it's climax and Simon and me headed north to Birmingham at the crack of dawn. Six hundred drummers, twelve hundred hands holding twelve hundred sticks...what's the sound? An effing row to be honest. What's the sound of 600 hundred drummers playing quietly? Now that is a real Zen riddle cos they can't. It doesn't function in brain. Drum? Quiet? Bang, bang, bang...We will, we will rock you, rock you. What's the sound of 600 drummers being asked to take a 5 minute break? Bang, bang, thwack, thump, thump, snaaaareee roll, cymbbbal CRASHHHHHH, runaroundthetoms, runaroundthetoms, double snare hit, splash.

After four hours of a deafening cacophony that would have had John Bonham coming back from the dead to complain that him and Mooney couldn't hear themselves think I became convinced that Multiple Sclerosis wasn't such a bad disease. Surely no illness was worse than this hell.

And then we came to the defining moment. The world record attempt. 600 drummers sticking it to MS. Simon was poised, double bass drum pedal at the ready....My ear plugs were buried deep - a sense of impending doom weighing heavily on me. Bang, bang, crash, smash, bang, bang, crash, smash...Then, imperceptibly it began to happen, out of the mists of hell appeared a rhythm, in time, in tempo, a unison sound, 600 drummers together, playing their hearts out. It's like Riverdance meets the Edinburgh tattoo with the Kodo drummers of Japan joining in. Christ, I'm tapping my feet along and bloody hell, Buddha just appeared. What's the sound of one hand clapping? I don't know but the sound of 600 drummers raising money for MS is really good...and it's most enlightening.

Thursday, 2 July 2009

That was the year that was

And so inexorably the cogs of time have turned until here I am celebrating my anniversary. Not a birthday, not a wedding day, not a 'where were you when Jacko/Diana/Lennon/Elvis died?' (delete as appropriate). But it is a year since my Neurologist, having shown me a selection of lesions in the brain on my MRI scan spoke the immortal words...I think you'd better sit down. I must say that having seen these tiny patches of white in my brain that turned out not to be some careless tippex marks from an over enthusiastic undergraduate doctor, the words It's probably Multiple Sclerosis seemed something of a it's not cancer of the brain? No, it was definitely Multiple Sclerosis. Excellent.

On the way home from hospital the words Multiple Sclerosis seemed to gradually get worse. MS is one of those big illness's that you've heard about since childhood. Of course Neuro had given us the new 21st Century medical mantra...don't google it...which we promptly did...8, 360, 000 results in less than half a second. Multiple Sclerosis is a proper, serious disease. This calls for a cup of tea.

A year later and life has changed beyond all recognition....hang on, no it hasn't. I have injections every other day, but I still go to work every day. I have various pains, aches and numb spots and occasionally I'd rather sit than walk ...but I can still go to the gym. I have some days when I really can't get out of bed but a couple of years ago I had hang-overs that had the same effect. Some times I can't remember things I knew very well a while ago but I'm assured by everyone that my memory has been rubbish since anyone can remember. There are the spasms of course which are generally ignored at home and a bit embarrassing in the pub...but hell, whats a twitch between friends.

Enough of this sitting down, I going to stand up while I can.

Friday, 26 June 2009

Licensed to ill.

It was back to Clinical research for a quarterly check up…bloods, walking, feet tickling, all the usual stuff. It fact it begins to feel like some sort of international torture conspiracy. The French “Allo, Allo” impersonating doctor was not to be found. Instead was a lady doctor from Spain, which is nice that we’re keeping it in the EU. Lady Doctor from Spain didn't fill me with confidence. This excuse must please me she said but this time first that I test do in English. Many times Spanish we do all the time often, but in English never. I have just been reminded by the trial manager that I mustn’t tell this doctor which drug I am taking as it is a “blinded” test. It’s important that her interpretation of results is not influenced. When she says tell me if I push your fingers down or up whilst she manipulates my toes I’m reasonably confident that I could shout Rebif Interferon beta 1a, three times weekly injection at the top of my voice and she’d be none the wiser.

Next it’s on to a new Neurologist, who seems to have got his jobs mixed up. He definitely gives the impression that he’s a suave, sophisticated secret agent working for MI5. NeuroBond, (licensed to interpret an MRI) sweeps into room 0.07. Hi, Its Dave isn’t it? Dave Carey. Any problems? Any side effects? Flu? Sadness? Paranoia? (Or was that just in my head) Alas I’m free of side effects which makes me a little paranoid. I’m not shaken or stirred as he goes through the usual rigmarole of general check ups and questions. A new nurse enters. She’s 6’ tall, blond and gorgeous. Ahh Miss Moneypenny. Take his blood.

Everyone’s Favourite Nurse has followed through her threat and moved to Southampton so now I’m under the watchful eye of Miss Moneypenny. Alas Moneypenny can’t do blood tests, she is more of a secretarial nurse (she gives me the urine sample jar) so she calls in another nurse. Nurse Blofeld doesn’t take prisoners. She doesn’t take blood particularly well either. Two arms later and I’m feeling like a pin cushion. After two hours I’m released into the outside world and head for the tube. It’s probably me but I’m sure I was followed home.

Thursday, 18 June 2009

Rock n Roll Saved my life

So Shimon, my great friend, colleague and drummer is the only person I know that’s iller than me. He dominates the illness competition. If we were top trump cards he’d win hands down. He tops my MS with CF. He beats my cholesterol with diabetes. Between us we’re injecting 10 times a week which probably makes our studio the most drug abusive recording facility since the Grateful Dead made an album in 1969.

Well Shimon being Shimon with CF has decided to raise some money for MS which means he’s either a top mate or dyslexic. I suspect it’s the latter and at some point he’s gonna be really pissed off that I’m cured and he’s not.

Even better is that in order to raise money for me he’s going to become a world record holder. In Birmingham on July 13th in aid of the MS society, 600 drummers will beat their drums simultaneously and create a record for the most drummers ever to play together . Birmingham Royal hospital will then treat 600 deaf drummers simultaneously and create another record. If you’d like to make my mate deaf please donate generously. Dollars, Pounds, Euros…all welcome.

Saturday, 13 June 2009


As my friend B. would say…that’ll learn ya…(she’s got northern roots)…and it did. All last weeks talk of feeling better than I had in years lasted until Tuesday. The ends of my fingers went numb about four o’clock in the afternoon. I had the kids with me, we were going swimming. Quite abruptly the numbness rolled out up my arms and down the legs, ending in the pliers relay on my toes. Swimming was off the menu.

Hey kids, what about we go to the park? I'll sit in the café with a cup of tea, you run around and be children...
Awwwhhh daaad, was the despondent answer.
What about I throw in a treat from the shop, an ice-cream and staying up past bedtime?
How big a treat?
Big as you want.
Hooray! We love Dad!
…who said parenting is difficult? It’s expensive, but it’s not difficult.

By the time we got to the park even lifting the tea cup seemed like an effort (full cream milk…should’ve asked for skimmed) and random pains were shooting through my arms. But then the real hell began…a screaming baby with an un-attentive mother. Really, if you’re going to have a baby that screams could you either show a bit of effort in stopping the noise…or go home. Don’t inflict ear piercing baby on everybody else in the café…My cup of tea was shaking, I was shaking, the whole afternoon was going down the pan.

Things settled down a bit during the evening and I put in a good 12 hour shift in the sleep department. By the morning I was cautiously optimistic. That’s the problem with this relapsing-remitting bit. It lulls you into a false sense of security. I could have sworn I had got over MS last weekend. Completely cured.

But by Friday I was feeling fine and dandy again in time for my Birthday. Cured – ill – cured all in the space of a week. We all went to a nice pub with good food and playground for the kids (why aren’t there more of those?) B. got the drinks in and I sat back confident that all was well with the world. Then the spasms started again. Full on jerky-twitchy-what's-wrong-that-bloke-spilling-his-beer-over-there spasms. That’ll learn me.

Saturday, 6 June 2009

Rude boys

Talk about rude health. I'm probably feeling better than I have for years. I'm firmly into remission with little sign of MS. The hamsters have settled down nicely. I'm 7 months without any baccy, wacky or not. I haven't got diabetes. A raised cholesterol level in a recent blood test has sent me running to the soya milk and benecol department. I've given up cheese (which is more difficult than anything I've done thus far for my health). I'm a slave to five a day and oily fish. The receptionist at the gym even recognises me.

In fact, so good am I looking that friends have started to're looking well...This of course is only said by female friends. Male friends are very different. In fact when a diagnosis of illness comes about the difference between men and women becomes stark. Female friends want to know all about it...what were the symptoms?, what did the doctor say?, how do you feel?, how are the injections?...

The conversation with male friends is markedly different:

I've got MS.

Oh. Did you see the football last night?

Occasionally it reaches such emotional levels as
Oh dear. That's bad news. Did you see the football last night?

Male friends that have no interest in football (I know a couple, weird I know) will steer the conversation on to how much they hate football. It's not that they don't care, but men don't like to talk illness. Men don't like to talk health. We just like to talk rude.

Friday, 29 May 2009

Odd jobs

Dan, who is my phlebotomist (yeah, my own phlebotomist, enough kudos...) came to see me at work earlier in the week to take my blood samples, my blood pressure, my take everything basically....This is obviously not a run of the mill occurrence at work, and believe me some weird shit goes on at work.

Of course my usually quiet studio is bereft of visitors from one week to the next. I've learnt to leave the "recording in progress" light on at all times and generally I'm left alone....until a strange man is a sticking a syringe in my vein with a tourniquet round my arm and a thermometer in my mouth. Then of course it's open season. Colleagues are in and out like it's Piccadilly Circus. Oh? Are you busy? Shall I come back in a minute? Give us a call when you're done...Finally it quietens down enough for Dan to concentrate on the business at hand - or in the arm.

I've perfected the method of looking in another direction when blood is drawn kicking and screaming from me. It's not that I don't like the sight of blood. Just not the sight of mine leaving my body in a glass container. Which is why I didn't notice anything amiss until Dan says...sorry I've dropped blood all over your carpet and down your arm. Sorry? Sorry? Is sorry enough from a man who comes into your office and spills your blood across the floor? Still, thank god he's not taking the piss.

Sunday, 24 May 2009

4' 33"

My brother, who insists he is a unique Paul Carey and so won't be joining a collective of like named international artists, was surprised to hear I was feeling fine. Your blog sounds a bit, well, like you're ill quite frankly. Which I am of course...but just not all the time...and so here, for the benefit of all I shall refute and put perspective on all things ill. It's not that I make the blog up, but if nothing happens I don't report it. And there in lies the seems like I'm only ever ill.

The problem when writing a blog of course is when nothing happens. If one is writing a blog about being ill and a whole week goes by without feeling ill then the blog gets a bit dull. It is of little interest for instance that on Monday I felt not even a twinge of MS. Of passing news-worthiness is that I forgot to do my injection on Monday evening. Of less interesting news is that EFN (who hasn't left for Southampton yet) said it didn't matter. Just do it Tuesday, Thursday and Saturday then go back to Monday, Wednesday and Friday. Where's the sensation in that? Things got worse on Tuesday when after a long and suspenseful wait I discovered I didn't have diabetes. Later I went to Birmingham where there was a fridge to keep the hamsters in. I remembered to inject. I didn't react. There was great excitment on Thursday when I crushed my finger whilst moving a mixing desk. It wasn't broken, but quite badly bruised...well it's gone a bit red.

My hands have stayed stubbornly pain free. There are no pliers attatched to my toes. The only song to drive my mind insane is James Brown's I feel Good. Unless you count Fridays hangover, which was entirely self inflicted by too much red wine at an evening reception featuring free red wine, I have to report that I felt and feel...well...not at all ill....A.O.K...Tip-top. I'm sorry. I look forward to boring you with more tales of feeling well next week.

Friday, 15 May 2009

Davy's on the road again

I have to admit that touring isn't such a good idea. Touring brings on stress. Will the sound work? Will the audience turn up? Will I turn up? It turns out that stress brings on 'pseudo-exacerbations'. These aren't relapses. They absolutely feel like relapses but they aren't. They are 'pseudo-exacerbations'. Pseudo? Pretend? There is nothing pretend about this. It's seems bloody real enough to me. My legs still hurt, my hands still sting, the pliers are still attached to my toes and all I really want to do is sleep.

Then there are the practicalities. Backstage in a theatre is not the ideal place to inject hamsters into the system. Most theatres have a cat for a start. Then there's the dressing rooms - full of dancers. There's nothing like a musician slipping out the back with a syringe to raise a few eyebrows. I was going to try doing it in the lighting box but all the technicians wanted in on the action...yeah it good shit? Well as oriental rodent ovary cells go it's top stuff. In the end I just casually pulled out the needle in the dressing room. No one even bloody noticed. I dropped my trousers, stuck the needle in my thigh, counted to ten, winced a couple of times. Nothing. Not even a casual remark from anyone. Bloody performers. Too into themselves.

Next week we're off to Birmingham. That means taking a weeks supply with me...and finding a fridge to keep the medicine cold...must ring the theatre...have you got a cat and a fridge?

Friday, 1 May 2009

All shook up

Sometimes it feels like one illness leads to another and leads to more and more problems. MS? Of course Sir. and would you like diabetes with that? ...but...and whisper it quietly, mumble it discreetly - the week started well. Nothing to report. I was ok. No numbness. No irritating music in my head. No pliers attached to my feet.

Then out of nowhere last night was really bad. I did my injection as usual, went to bed, land of nod. Then about 1.30 I woke up. Hot. Burning. Tremors, shaking, pins and needles, uncontrollable. Fi began to worry. The plier man reappeared, this time with four friends and applied pressure simultaneously to all my toes. Involuntary shaking became so bad Fi wanted to cover me in day glow paint, stand me in the corner and call me "feature lighting". Have you had your paracetamol? She said. Paracetamol? I said. Are you joking? Paracetamol can't help me now! I need urgent care. No she said. You forgot to take paracetamol with your injection.. She was right. She normally is. A couple of paracetamol later (with ibuprofen thrown in for good measure) and everything calms down. I feel exhausted the next day but symptoms have disappeared.

I need to warn Florida Dave Carey about this though. Florida Dave is about to become the second Dave Carey to take Rebif Interferon beta 1a. I wouldn't mind betting we're the most popular name on Rebif's books...hey...we could get sponsored by them. Now this could work....MS vs Dave Carey (feat. Interferon Beta 1a). What's more I've found a New York Dave Carey that's a video maker. We could become an internet art collective. We could be called the Virtually Dave Carey Collective. VDcc for trendy short. No, hang on, sounds like we've all got Gonorrhea. That's an illness too far. We'll stick as a duet.

Thursday, 23 April 2009

Music of my mind

It turns out I couldn't handle the hamster after all. Just as I thought it was safe to go back in the water the big hamster came and bit me to pieces and triggered a relapse. It started during the night when my hands started to heat up...and up...and though someone had put thermal gloves on me then dumped in the Sahara. Worse was to come - a Bruce Springsteen song got stuck in my head ...whoaa. whoaa, whoaa I'm on fire. Now I don't mind a bit of Bruce occasionally but stuck in my head for hours while my hands spontaneously combust is too much. Illness is bad enough - repetitious songs stuck in your head is far worse. Illness can be controlled with drugs. Songs in the head can't. And it's always the annoying ones. Kylie's nah, nah, nah. nah, nah, nah-nah, nah. Get out of my head will you.

The following day and my feet had joined in. MS had cunningly attached pliers to all my toes and pressure was being exerted to all of them individually in some sort of weird toe/pliers relay...all this to the accompaniment in my head of heads, shoulders, knees and toes. Of course the lyrics gradually morph to suit your needs. Heads , shoulders, my toes hurt (my toes hurt). Round and round and round. Heads,shoulders....Suddenly I'm missing Bruce.

That evening I hobbled round the kitchen trying to cook dinner ....until Fi could take it no more. Sit down will you. You're driving me mad. It was time for Bruce - Baby I was born to run....hopefully tomorrow.

Saturday, 18 April 2009

Small world

Well it's all gone pear shaped now. Everyones Favourite Nurse is leaving the trial. I've become a bit choosy about who stabs me with a needle and EFN is pretty much top, second, third and last on my list. I guess a mutual dependency exists between you and your nurse. I depend on her and she depends on a new job in Southampton...cos she lives there...what sort of excuse is that eh? She's fed up with four hours commuting a day. Where's the dedication?

Her parting gift to me is 3 months supply of hamster serum in its max strength - 44mgs. Heavy duty. Dr. G pops in to check I can handle it. Can you handle it...can you handle the hamster? Is not what he says at all. In fact he says I doubt you'll even notice the increase. Generally speaking if 8mgs doesn't do you in then nothing will. Nice. He's amused to hear that my twitching has stopped. Nothing to do with the hamster serum he says just co-incidental remission. That evening we're at a play in London and my hand starts to co-incidentally twitch as that familiar numbness starts to make its way down my arm. A healthy dose of beer in the pub after seems to numb everything else enough to make the arm feel at home. The following day and I'm back to full limb feeling. My mind is just playing tricks on me.

Back at work and a colleague introduces me to a scrawny fifteen year old kid who is joining the Youth Theatre...Dave Carey my colleague Carey, it's a small world isn't it...what are the chances of that eh? I look this kid in the eye...d'you wanna join a band?

Sunday, 12 April 2009


Well I don't know about Britain but Dave Careys have definitely got talent. Turns out there's loads of us. Dave Careys are playing in bands in Pennsylvania, Boston and New Jersey - New Jersey Dave has even recovered from Leukemia which makes him leader of the band in my book. And...he plays the trombone! I'm a bit rusty but my trombone is still in the loft...I could get it out again...little bit of practice....Then it turns out that another Dave Carey had a #1 HIT in 1957...Bingo! Bingo!! I'm in love...Should this be our first release? A cover of Dave Carey's Bingo! Bingo! recorded by Dave could start with a trombone duet. I need to check it out with Florida Dave first as he's been in the band from the start and really it's our band.

Meanwhile the diabetes jury is still out...the blood specimen was 'unable to be processed'. But what the hell does that mean? Unable to process because they've lost it? - because they accidentally heated it in the microwave with some tomato soup? Or did someone mix in half a pound of silver spoon granulated and I'm technically speaking dead but they haven't got the heart to tell me...but no...Don't worry they say, we'll take another sample when you're next here.

This means next week as I'm back for tests to see if my blood is ok for an increase in hamster serum injections (up to 44mgs). The injections are now leaving their familiar red marks at the injection site. On my stomach two red patches sit above my belly button like eyes and I'm definitely getting some odd looks a the gym, particularly in the sauna where the heat seems to exaggerate the red blotches. In fact if I position my hands correctly my whole stomach does a reasonable impression of Edvard Munch's 'the scream'. Good enough to go on Britain's got talent I think.

Sunday, 5 April 2009


Me and Dave Carey are making serious plans...mid west tour shaping up nicely...Madonna support slot unfortunately fell through...she only wants us if we can find a Dave Carey from Malawi...definitely worth a try though. Dave sent me a link to his web site . I'm going to try and sample his guitar playing and muck about with it then send it back for him to add to. Canada guitar Dave is still playing hard to get and not responding to my twitters, guess he's holding out for big dollars...he's got to learn that this band is bigger than any one Dave Carey.

In the midst of all this it's easy to forget the MS bit...or rather it's nice to forget. I've now stepped up to 22 mgs of Beta Interferon Chinese Hamster Cells. I have to say that since the hamster injections started there has been no real difference to my MS hands and feet - they still feel like they are being slowly electrocuted....BUT....and this is quite an exciting BUT...the spasms that I had begun to feel quite self conscious about have all but disappeared. No more do I twitch in the middle of an important meeting...Once, a 'super twitch' that occurred during a show made my foot leap in the air and land on my sustain pedal leaving my keys temporarily blurred. Then I couldn't get my foot off the damn pedal for a whole verse and chorus. It only left when another spasm lifted the errant foot off the pedal long enough to clear the sustained row before landing back on the pedal and starting the whole process off again...but now the worst seems done...I haven't elbowed one of the kids involuntarily for it...we're off to France for a day trip tomorrow...I wonder if I can track down a French Dave Carey...maybe some accordian would give us a bit of a cajun edge.

Wednesday, 1 April 2009

What's in a name?

Oh! The joy of social network sites. The fun of facebook, twitter et al for me is finding all those other people called Dave Carey...what do they do? well do they do it?....found a guy in Florida who combined our mutual name with a mutual career...what you don't expect is a mutual diagnosis...poor old Dave many musicians called Dave Carey could possibly have relapsing remitting multiple sclerosis? Well, two it seems. We should start a band - we could call it MS vs Dave Carey...In fact I have now resolved to trawl the world for other potential band members of MS vs Dave Carey

If there aren't enough Dave Careys with MS I could widen the net to include other neurological illnesses...a drummer called Dave Carey with Parkinsons would be fine (if a little bit shakey)...I've found a guitarist called Dave Carey in Canada but there's no mention of illness...should I twitter him and ask if he's ill?... Hey! Should we include David Careys?

Let's imagine if MS vs Dave Carey could be a trio or even a quartet...the Guinness book of world records be play for certain...a hit single guaranteed...we'd probably break up though, we'd get on each others nerves...what's left of them.

Monday, 30 March 2009


Between tests and drips it's difficult to know how to fill this 21st century journal. It doesn't help that all I want to do is sleep. A week of Chinese hamster injections (interferon beta 1A) and I think I've gone into a kind of late winter hibernation. Sleep has never been so appealing. Thankfully I haven't had a sudden desire to consume lettuce and cereals and I have so far resisted temptation to buy a giant wheel so at this stage I think I'm not turning Kafka like into a hamster, but god I can sleep at the moment. Ella and Beth would of course be delighted at the prospect of a hamster in the house. It would finally give a purpose to the old toilet roll insides they've been hoarding since last year and ever since I explained that poor old Winnie the cat won't live forever they've been looking forward to a new Winnie still alive? is the slightly disappointed morning question. But they wouldn't behave like Kafka's family, hiding me away from the lodgers. Blimey, Ella would put me into her book bag and take me in for show and tell at school.

In general the girls are fascinated by the whole injection business - no squeamishness from them - they just park their chairs up for a good view of this latest alternative to childrens tv...God knows what they tell their teachers about Dad shooting up of a Monday night, I'm half expecting the social round tomorrow morning. Now that would be perfect for this weeks journal - My Dad's a junkie hamster.

Thursday, 26 March 2009


It was a bizarre end to the week of steroids and hamsters. First off a letter arrived from the trial centre apologising that I had been unsuccessful in joining the trial and applications had now closed...this was news to Everyone's Favourite Nurse who was just sticking an IV into my right arm. In fact it was news to everyone but no surprise to me. Admin errors have dogged me throughout this year. If the NHS was the sum total of it's parts it would be the best organisation in the world. Every Prof, Dr, Consultant, Nurse, Manager, trial thingy person I've ever met has been first rate, caring, honest, professional and helpful. The caliber of our NHS staff is phenomenal. However, every attempt at administering between two or more hospitals has been a total and hopeless phenomenal disaster. Barnet did the wrong tests on my blood then lost my Neurologist referral, Enfield made a follow up appointment before I'd had the first appointment, lost a referral to the Royal Free then forgot to pass on my results to the trial centre at Royal London. This was made even more annoying by the permanently full mailbox on the end of the Neurology department phone. So the suggestion that I hadn't got on the trial three days after I'd started seemed about par for the course.

But after a week of drips and tests it didn't really seem to matter any more needles for a month. I'm free. I'll just get my coat on. Oh, before you do could we just do a quick blood-glucose test...only your sugar levels are a bit high and we'll need to send a sample through to the lab for testing...has anyone in your family had diabetes?..I'll take my coat off then.

Sunday, 22 March 2009

And a No. 47 to take away

So I went to collect my consolation prize from the good folks at Clinical Research. The 2nd prize, Interferon Beta 1a, according to the leaflet I'm given to read - is licensed for the treatment of Multiple DNA treatment of 'Chinese hamster ovary cells'...I'd like to meet the scientist that first thought - MS?, Chinese hamsters?..Eureka! Did they try Spanish hamsters first?...too laid back man....We'll deal with your MS tomorrow. But before I can get to this weird Chinese take-away smorgasbord I had to complete the usual corridor walking and mental arithmetic tasks. Then came the blood samples to keep the Americans busy....and finally onto the pre-injection main course - an hour of steroids by IV drip.

The steroids said the new Doctor from Sweden who I hadn't met before will make you very lively, you know, a little bit 'high' and fidgety. Now I'm not good at sitting still at the best of times but here they were pumping steroids through my system whilst expecting me to sit immobile with needles sticking out of my arm. Fortunately Everyone's Favorite Nurse kept me entertained with demonstrations of my new do-it-yourself injecting kit. Unscrew this bit, screw this into that bit, unclip that, put the syringe in that bit, check the marker, don't forget to remove the cap, pull out the lid, depress the top, place at a 90 degree angle, press the button, count to five...s...l...o...w...l...y, remove needle and hey! presto. By the time I'd done that wrong twice on an innocent looking plastic cushion the 60 minutes were almost up and I was feeling disappointingly not 'high'. I don't know what drugs she gets in Sweden but they must be pretty low grade.

And then to the big moment - my first injection. Just me, the needle, the contraption and the drugs with E F Nurse looking on like an examiner....I unscrewed, I connected, I pulled, I depressed, I pushed and phut...nothing. You've still got the cap on said EFN. Bollocks. I tried again unscrew, connect, twist, pull, press, push, bingo!! 26micrograms of Interferon Beta 1a coursing through my veins. 26micrograms of Chinese hamster ovary cells...Richard Gere eat your heart out.

Tuesday, 10 March 2009

Goodbye to Youth

So they finally cut away the last vestiges of my youth. Jewelry is a big no-no in MRI scans....although they didn't seem so bothered at Chase Farm during my diagnosis MRI - if you feel the earring being wrenched out of your ear press the buzzer...An MRI scan is of course one huge great magnet. MRI's for a trial are obviously taken more seriously. I'd worn earring's since the first heady flush of late seventies rebellion. A pierced ear and a packet of ten number 6 were the sum total of my uprising. This particular earring had been welded into place at a proper piercing shop at the top of Edinburgh's Grass Market some many years ago and it now seemed impossible to remove. We need some cutters said the MRI attendant, come on we'll pop up to the plastering room, they'll have something. So up and down corridors, through wards of ill people, past the broken limbed all the way to the plastering room. Now you'd expect a request involving technical names for the cutters, or at least catalogue numbers but no...have you got those big cutter things in the shape of two cupped hands accompanied by an impression was the limit of this medical knowledge. What d'you want to cut? was the response and my earring was duly pointed out. Oh, you'll need these then and out came the untitled big cutter things in the shape of two cupped hands. Seconds later and my teenage rebellion that had stretched into the eighties, nineties and beyond had at last been laid to a respectable rest as two broken halves of a gold ring lay on the cutting room floor.

Back at the scan I settled down to an hours clunking. banging, whirring that is the state of the art MRI machine. First time I heard it it sounded like my long awaited collaboration with Brian Eno. But this time without my youth swinging from my ear it felt like a noisy row. Apres scan (is that a trend I could start?) at the trial centre is the now usual collection of weird tests. Then it's just the minor point of randomisation. Of course having succeeded in US blood tests and the French corridor walking championship it is inevitable that I fall at the final fence and end up on the existing drug Beta Interferon 1a as part of the study group. Hey ho, ho hum. At least I can't throw a teenage strop.

Saturday, 28 February 2009

Bloody Cold War

So while my blood laboured in LA the rest of me flew east to Moscow. I lived in and around NY for a while in the eighties but nothing beats the insane joy of Moscow. Last time I was there I met up with an old family friend, Dr. Nickolai. We met in the foyer of a old style soviet hotel. He's a big bear of a man, not unlike Breshnev to look at. In his younger days Dr. Nickolai was the countries foremost immunologist and he still has contacts in the business. As customary at such meeting we exchanged carrier bags containing gifts, the whole meeting resembling a cold war exchange of information. In fact we were exchanging information on MS and the best treatments as well as a few boxes of chocolates.

MS feels like a cold war of course. Lots of waiting, the constant threat of worse to come with sudden bursts of unexpected activity. As your nerve endings fray it seems that feet freeze in the heat and swelter in the cold which with harsh winters and cheap heating makes Russia perfect for confusing your extremities. As is customary in icy conditions I fell A over T on my way back from buying a cappuccino and had to helped to my feet by an old lady. My cappuccino was intact even if my self respect wasn't. BB was quick to point out that falling over with or without ice is something I've done for years and is nothing to do with MS

This visit culminated in the launch of the Moscow Chickenshed (Taganka Shed) at the British Embassy. Now that was cool. Well cold actually. Minus 12 outside and snowing as we arrived at the security gates. But if you are going to enter the British embassy in Moscow then quite frankly with snow falling and furtive glances is the only way. It demands to be John Le Carrier. Alas my cover was blown when our EU officer pointed out that nobody, but nobody wears their winter fur hat with ear flaps down...Russians are guilty of many fashion faux pars...but ear flaps down?...please...

With the wind taken from my sails and feeling more Brook than James the evening was saved by a bizarre interview for Russian TV (tell us and our viewers...what is you doing in Russia?) and of course great company in a great restaurant that served an even better Cranberry Vodka. That warmed us up.

Monday, 16 February 2009

It's enough to make you screen

So screening is complete, well almost. I spent the day at the Clinical Trial Centre meeting the doctors and nurses who will oversee the trial should I qualify, and that still remains an if. I met with Dr. G who Fiona described as looking Irish, having an Italian name and was actually from South Africa. This whole trial thing is his idea. He is the professor behind the whole concept and is obviously quite bright. Anyway he was able to tell me I had the right type of MS for the right amount of time. So far so good.

Dr. M. was a completely different kettle of fish. He looked like Hugh Grant and sounded like that policeman with the terrible French accent off Allo Allo. He was responsible for assessing my fitness (can you wak for 'alf an 'our) and disability level (please wak across ze floor on your eels). He also had the terrible 'metal arithomatic' CD which required me to add up two numbers whilst listening to a third, which I then had to add to the last number in the sequence whilst listening to 'anzuzer nunzer'. Then he uttered the words that you really don't want to hear from a French Hugh Grant looky-likey of a Monday, you and your, er, wife...are you know what I'm saying...It's heads up as to whether this sounded better in an Inspector Clouseau voice or an Eric Idle nudge nudge manor but it was definitely a relief to change subject. The whole funfilled hour was topped off with a speed walk down the corridor, much healthier and much more fun...him with his stop watch, and me on my eels. I passed with flying colours which i think means I'm fit enough to be ill.

Finally was the nurse who took enough blood for several patients. We struck up conversation as she removed the blood...where do you live, what do you do...Chickenshed? My cousins go there. They're in the Youth Theatre.

So the final results are...well there aren't any yet, not until my blood gets flown half way round the world to be tested in LA (and no I can't go with my blood) but I do have a timetable of events at least.....

Provided my blood meets with American approval I will be randomised to begin 'infusion' on the 16th March