Ashes to Ashes

So the ash cloud from Iceland threatened to derail (surely deplane) my travel plans. By Tuesday night I should have finished a show at the Hard Rock Cafe in London and headed for a hotel in Heathrow ready for an early morning flight to Moscow. But at 8pm my flight was cancelled and British airspace was closed for the foreseeable future. At some point that evening I suspect a large amount of money changed hands because by 11pm British airspace was miraculously open and I was once again heading back to Moscow.

I landed at 9pm and by midnight I was back in the comfort zone that is Hotel Ermitage. Hotel Ermitage is Fawlty Towers transposed from Torquay to Moscow. The staff are so pissed off to see customers it becomes a sport to see..
a) How long it takes to make a member of staff smile
b) How many members of staff you can make smile in a 12 hour period
Of course the answer to a) normally exceeds the limit of b)

Naturally there are no lifts to the fourth floor which is where I am always placed...infact I have been placed in room 412 on four out of five visits. Floor 2 seems to be mysterious floor, accessible only through a large oak door, from behind which emanates the sound of muffled Euro-house music. One gets the distinct impression that the rest of the hotel is engaged in some extravagant party to which everyone except floor four is invited.
Well me and my colleague bucked the trend and started a floor four party on Thursday, leading to impossibly heavy drinking, wild music, games of Russian charades and games of Russian roulette involving Chili-Vodka. All of which in turn led to forgetting all about injections...I suspect this is the only connection (and tenuous at that) to MS and the reason for this blog. I apologise but when you’re having this much fun...

Breakthrough

Back in the drizzle of the UK and everything seems a little pale and colourless against the multi-coloured visceral thrill of Africa. My MS symptoms which caused my first outing with a walking stick have now been upgraded to a relapse by the good folks of clinical research. What's more, because I'm on drugs this is called a breakthrough relapse. The moment I learnt that I've been stuck with the Doors in my head....break on through to the other side...Now Jim Morrison never let anything break through his drugs.

Talking of breaking through, my intrepid brother has been busy breaking though the pain barrier in search of extra funds for MS. This morning he ran the Brighton marathon. If you wish to donate you can via...
www.justgiving.com/seemed-like-a-good-idea-at-the-time
And finally this week promises to be a new kind of breakthrough for me...If Icelandic volcanic ash can be persuaded to abate and allow some flying then I shall get a kind of Phil Collins type experience. Following two shows at London's Hard Rock on Monday and Tuesday I will hot foot it across to Russia to play keyboards in a show in Moscow on Wednesday.

 

Pictures of Malawi

When everything is this beautiful, joyous, sad, uplifting, mad, inspiring and memorable it's difficult to write about illness...

Malawi

Well, what a long time a week can be. Last Friday it was that I woke up and found my right leg unable to support my weight. Getting up the stairs required huge effort. In 72 hours I was flying to Malawi. Not a good time to lose mobility. Things went down hill during the day. For the first time people at work started saying are you alright, you’re limping? By Saturday the dull, nagging numbness that consumed my right leg had started to move to the left. Things got so bad I was forced to go out and buy a walking stick. Things improved a bit and I managed the last show on Saturday night and crossed my fingers for the next day.

Sunday was a marginal improvement again. Enough to encourage me that I could manage to get to Malawi. I could see in Fi’s eyes that she thought I was deranged for even trying it but I’d already packed and now I had a stick anything was possible. We got to the airport. While I lent on the check-in desk the kids took it in turns to limp up and down the airport with my stick. You could see the other passengers looking at us with sympathy...a whole family of limping English people for god’s sake. ..

And then all too soon I was on my own boarding a plane bound for Nairobi. Me, hand luggage and the stick. During the flight I found that my right leg was gaining in feeling but crossing my left leg could only be achieved by manually lifting it over the right. I dozed fitfully for the 8 hour duration. I was no better at Nairobi but the luggage was transferred automatically for the Lilongwe flight so I just had to limp and lean with the hand luggage. The four hours to Lilongwe (the second quietest airport in the world) via Harare was entirely slept. Which left me with a four hour wait for the final flight to Blantyre (the quietest airport in the world). I sat with my leg up and sipped a beer or was it two, could have been three, until I was called to board the Malawi Air flight. I made my way towards the boarding gate. Suddenly from behind me came a commotion.... Sir! Sir! Sir! Please wait... the bar man caught up with me just in time....here, you forgot this...and he handed me my stick. Malawi was going to be just fine.

Zikomo.

the writer, the actress, the singer and me

Finally got to meet the other trialists in my group this week. They have been randomised to the Alemtuzamub and until now have just been the voices next door. Last March,  as I sat on my own with my steriods and rebif I could hear them in the room next door, getting dosed up, chatting, laughing. It was their party and I wasn't invited. Well, I'd been invited to sit next door which was worse than not being invited at all. It was like arriving at school on Monday morning and everyone talking about the party they'd been to on Saturday night and you'd known nothing about it. Or maybe that just happened to me. And here it was being replicated 30 years later.

And so I arrived full of indignant intent like it was their fault...I'm cool. I'm good. You're all pals and I'm just the outsider on the cheap gear. Just ignore me. You stick with your posh drugs. Don't share them with me. I'm just fine and dandy.

And then they ruined it. They were all really friendly. Open. Chatty. Even the writer who said she was  a bitch wasn't at all. After a few hours I knew more about them than I know about people I've known for ages. Everyone a different story. Every experience listened to. Every answer respected. Stories of love lost and stories of love found. It was beautiful and I'm welling up now.

I have no idea where this has blog gone...don't be ill on your own I suppose. No, be ill with interesting people. That's the answer. Maybe I should start an ill-friend finder website. Find your perfect ill partners.

The art of Poo

It's a big week in MS world. The trial has been running for a whole year so I'm back to Whitechapel for an infusion top up and some comedy tests and then on Sunday I take the plunge and fly to Malawi via most of Africa it seems (it's a budget flight so I have three stop overs). Regular readers will know of my fear of flying so four flights to and four flights back should pretty much cure me of that. A sort of cold turkey for aerophobics (I looked it up on Wikipedia)

First things first though, I have three mornings of cannulas being inserted and then a couple of hours of steroids and anti-histamines flushed through me. The people on the new drug need this to counteract the side effects of the new drug. I have to have it to prove that the people on the new drugs haven't been made better by the drugs administered to counteract the side effects of the new drug which I haven't been given. I've got the old drugs. They don't need extra drugs to counteract side effects. But I get the extras anyway. In trial world we call that pulling the short cannula. Although whichever cannula you pull it seems far too long to go in a vein.
It seemed sensible to spend the day before this taking in some art and courtesy of arty bruv Paul we whipped round the Chris Ofili exhibition at Tate Britain. This was the perfect bridge between a trial for an illness that make you feel shit and travelling to Africa; modern art with elephant crap stuck to it. As elephant poo art goes it’s definitely the best I’ve seen.
See you in Malawi.

The sound of science

An MRI scan is a bit like an avocado really, well, much more expensive - hundreds of pounds for an MRI against avocados at 3 for a pound in the Turkish supermarket down the road, but they are both an acquired taste. And once acquired they are a bit addictive.

There's something very Stanley Kubrick about the metal cage fitting over your head to hold it in place and then being rolled into a metal cylinder only slightly bigger than you. In fact, being a decaying London hospital it's got a uniquely 70's Sci-fi feel to it. Holding a panic button in one hand whilst staring at the upside down mirror lets you see your potential saviour in the control room. They take on an other worldly context. You presume they're discussing matters of great science or at the least the progress of your scan, but in the back of your head you know full well they're talking about last nights Eastenders.

But it's the sound that I love. The clunking, the whirring, the booming bass synth noise. I can spend hours trying to work out the time signature of this ever evolving magnet symphony. Which is useful 'cos it takes hours to scan the brain to the googleplexsmillimetre. Steve Reich wrote some of my favourite music with his 'phases' series. 'MRI phase' is going to be my next project. A piece for three MRI machines slightly out of phase. I'm off down the Turkish supermarket to see if they've got an offer on.