I recently said farewell to Arnie, my trusty injection device that has served me well since January. Ironically the week after I started injecting Rebif I went for an MRI scan which made me eligible to have Tysabri infusions (it’s also known as Natalizumab but seriously, as someone with MS and occasional speech issues how am I meant to say that!?). I’ve had no problems with Rebif but I felt Tysabri was the right choice for me – it’s chances of stopping relapses being over 65% compared with 33% (it’s all about those numbers again!).
The thing is, when I made the decision (which literally took me about 10 minutes – I’m very decisive when it comes to these things) I didn’t take into account, or rather I conveniently put to the back of my mind the following:
- Hospitals kinda creep me out – I will now have to spend 2 to 4 hours in one every 4 weeks;
– Needles – now I know I’ve been injecting since January but the Arnie has done all the hard stuff and it was not into a vein; and
– Blood (this is the biggest issue) – the sight of blood, particularly my own and even the smallest of quantities has the tendency to leave me either sat with my head between my legs trying not to throw up or lying on the floor unconscious.
So last Wednesday, as I sat patiently waiting to be called, the things that were at the back of my mind came to the fore and I became a little nervous. Knowing that I would have to have not just 1, but 2 cannula’s inserted, 1 to administer the drug and the other ‘just in case’! The ‘just in case’ cannula being for allergic reactions to the infusion – statistically unlikely to occur but if I’m going to go into anaphylactic shock it’s most likely to occur during the first 2 infusions. I wasn’t actually that concerned about that; I just didn’t want to look like an idiot by passing out in front of a room full of people. For some reason, when I pictured the room (which I’d never actually seen) I couldn’t help picture it with blood – not copious amounts but enough that it would always be in my field of vision.
As it turns out, unsurprisingly, there was no blood visible. Having the cannula’s inserted was no different to the sharp scratch of a blood test but without the sense of having my life force drained away after! And I could look at them after without feeing ill. Once I’d finished taking photographs (I mean who doesn’t want a few photo’s to remember such an occasion by) I lay back with my book and relaxed. Time went surprisingly fast, for the first hour I’m hooked up to the Tysabri, that’s followed by a 15 minute flush and then I’m unhooked for an hours observation during which time my Neurologist does a few tests (sticking pins in me to check my reactions – you know, the usual!). It was easy. Well almost.
Of course I have missed telling you about a vital part of my first infusion, the part I was least concerned about, wrongly. To ensure that the drug is doing its job and not messing with my brain I will have to undergo regular cognitive testing which looks at Memory, Attention and Concentration, Information Processing, Visual Perception and Constructional Abilities and Verbal Fluency aka word-finding. In someways it was kind of fun but at the same time really quite hard. I was pretty pleased with my score of 96 out of 100, my visual perception tests were particular good and my memory was way better than I expected – I can still remember the name and address of a fictional woman and 3 unrelated words.
It was always going to be the verbal fluency that would trip me up. Even that was going quite well. Then I was told I would have a minute to say as many words as possible beginning with a letter and they couldn’t be names of either people or places. I was given the letter P, a good letter you would think, there’s lots of words that begin with P aren’t there? The Oxford English Dictionary contains in total over 170,000 words so it stands to reason that there are lots of words I could have said… I feebly manage to get out words like pillow and party but there is a word lurking, desperate to be spoken. Surely there are other words I could say but my mind is going blank. I haven’t got a choice – I have to say it. My final score for that test is rubbish, only 11 words in a minute but I’d like to think from the smirk on the nurses face that my answer of ‘penis’ amused her.