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.

In the footsteps of Madonna

Finally some excitement in trial world, something to challenge the trialists of Whitechapel. I've been invited to travel to Malawi to work on a music and theatre project with a company called Nanzikambe. Can I go? This will cause some scratching of heads...there's inoculations to consider - Hep A, Hep B, Hip-Hop, Typhoid, Typhus, Typhoo...Then there's malaria tablets...and it's a Chloraquine resistant area so requires Malarone. What's more there are long haul flights in pressurised cabins leaving me in a rabies present environment. And my tetanus is out of date...How will my Rebif travel...24 hours in planes, trains and automobiles...this will get them thinking. I sent off my e-mail laying out my travel plans. Twenty minutes later there was a reassuring ping in my inbox.


No problem. Have a good trip.

So that's it then. March 28th 8pm. Heathrow Terminal 1. Kenya Airways calling at Nairobi, Harare and Lilongwe. I shall try not to come back with an orphan.