I have just finished my third day of 3.
Lemtrada Round 2 is now complete.
As I left the Brain Centre in Southmeads, blood tests were taken to confirm that my lymphocyte count was down to near-zero.
(So, let the recovery commence…)
Three days spent stewing in a chair, as drugs – uppers & downers – were added to my system, probably doesn’t leave me in the best mental state for a concise and well-written blog…. so, my apologies if the below reads a bit disjointed – I’ve tried to keep it brief!
Last year I finished my 5 day course, Round 1, feeling pretty beat-up.
I was covered in a body-length rash; was suffering cold-sores; and had a grey pallor, black-circled eyes and a nauseous vertigo that last for many weeks afterwards.
This year, I prepared for the same.
But, touch wood, it turns out that my experience of Round 2, so far, seem to be more akin to going on holiday.
Perhaps I type this a bit disingenuously, to afford myself a wry smile – but I do mean this literally: the nearest physical / psychological state I can equate this experience has been somewhat akin to “going on a holiday” – albeit a very (very) long-haul one. And just the “going” bit rather than the enjoyable bit of actually “being there”.
If Day 1 was a bit like coming off a very long haul, economy class flight – reminiscent of the ones we used to make, en famille, when we lived in Australia – by the end of Day 3, the cumulative effect could be likened to getting straight back on that same plane, flying back to London – maybe stopping for a quick a shower – then returning straight back to Sydney again.
I’m tired, and head-achy with a sore belly, back and knees. My skin is dry and I feel a bit nauseous. My body-clock has been broken: all three nights I’ve been awake between 2am and 5 despite having taken sleeping pills (that seem to kick-in just as my alarm sounds to wake me up) and, perhaps crossing the boundary into “too much information”, it’s also been 3 days since my last “bowel movement”.
Maybe I need to add to my long-haul flight analogy: a few hypothetical, and ill-timed, expressos from an airport bar when I was about to drop-off to sleep; then a couple of similarly ill-judged whiskey chasers from a drinks-trolley which made me feel a bit woozy (and then hung-over). [I’ve just been hit by a wave of doubt that the self-satisfaction I’m getting from this analogy is merely the drugs talking… but it even seems to hold when I consider that vertiginous dizzy feeling you sometimes get trying to take a wee in a aeroplane toilet in the middle of the night…]
Some blotches have cropped up all around my neck, my whole head is pretty flushed and a shingle-like rash has appeared on my chest – but these are not only painless, but are utterly benign.
So, all-in-all, although I wouldn’t say I feel great, this is “chemotherapy” folks. Last year I spent several hours in a foetal position trying to count the passing seconds. This year I read books, listened to pod-casts and watched DVDs.
Dare I say it, but I’ve felt well enough to start feeling bored. As I prepared for this stint in hospital I researched risks and rates for thyroid issues; ITP complications; listeria; and herpes infections. I didn’t find any statistics for mild, but not unreasonable, levels of slight boredom. My (non-alcoholic) champagne will remain on ice for several months yet…. but this feels like a relatively auspicious start.
Round 2. The Lemtrada pebble has been dropped into the glass-pond of my life. The initial splash doesn’t seem to have broken anything but the ripples have now started. The question is where they are going; how big they’re going to get; and at what angle they hit what shore, and when.