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.