As I left the treatment centre a week ago, I received an upbeat text: “So, you survived Lemtrada!”
And so I did.
But the phrase didn’t ring quite true – this didn’t feel like a moment for a celebration. My “surviving Lemtrada” feels akin to “surviving MS”: there seems to be the need to add the disclaimer, “for now”. Something slightly murky had been done to my immune system – the immediate and direct impacts of which were fine – but the endpoint was/is still far from known. Since then, a directly related (albeit anticipated) flare-up of my old MS symptoms has been difficult to absorb. But the week of treatment, then week of recovery, has certainly given me ample time to think… maybe too much time… and so, now, another blog as I piece together where I am now.
This blog was always intended to intertwine MS and cycling…. but I’m afraid there (sure as hell) isn’t any cycling going on here at the moment. If I have to stretch to a cycling analogy to maintain the thread, the last fortnight has not been unlike a 2 week cycling adventure: there’s no way I could sum up the emotional extremes in a simple sentence; there have been some highs and lows; some tears; some pain; and, at the end of it, I’m simply back where I started.
Apologies for this unusually long blog, but this fortnight feels as though it’s been the confluence of many hopes and fears; big emotions that I want to try and get on top of.
The week of my treatment
The actual facts of the treatment were perhaps the least interesting aspects of it. The drug was delivered via the steady drip, drip of IV. Me, the patient, in bed, watching my pulse, my blood pressure and the time of day. Nurses with unfathomably deep reserves of kindness asked me how I was, stuck needles in my arm and took my temperature. The drug looked no different to water, but arrived each day in a black sack of thick plastic, stamped with toxicity and danger. It felt slightly cold as it went in.
The first few mornings I was given steroids first – which seemed to have the same effect as a glass of champagne, nervous before some social ‘do’. I don’t think I’d felt so good for months; sipping a coffee, sitting up against fluffy pillows, texting friends and making bad jokes to whichever nurse happened within earshot. By the first afternoon though, my temperature was 38.5, my HR was pounding at 80, I was nauseous, sweaty, and crawling into a ball as my head spun. But that transition on Day 1 was the worst of the week. From then on, the daily pattern was more… expected. And less severe. Each night I slept badly – slightly feverish, twitchy and invigorated by steroids; but, each morning, I seemed to get a window of respite before more negative side-effects kicked in. The worst grogginess was in the afternoons, but this was subsiding by the evenings.
My fear that I’d get bored stuck in a bed all week proved unfounded, but so did my hope that I’d catch up on some good books and DVDs. By the time that all my morning checks had been completed, all I felt like doing was lying, largely motionless, eyes shut, but not asleep, seeing how low I could get my resting heart beat.
Whilst I’ve never been accused of having a model’s good looks, I think it’s fair to say that as the week wore on I started to look quite remarkably bad… even by my standards. Blotchy cold sores appeared all round my mouth and eyes; and a heel-to-head, full body rash, both front and back, glowed the brightest of swollen reds. Although these were only mild irritants, they seemed to make me all the more lethargic and tired.
It brought a wry smile to my lips when I considered quite how similar I felt to those head-crashing hangovers of my younger self: the sensation was of being slightly poisoned, drinking water to try and flush myself out. At least this meant the drug was getting into me, doing what it should be, rather than something I’d brought upon myself through youthful craziness.
A week of treatment was certainly enough. My pallor was a tired grey and I had black rings round my eyes.
But it had been fine.
If the choice to accept this drug treatment was a decision to suffer short term gain for long term pain, I would have gladly suffered much worse if this would have meant an improved long term prognosis.
As I left the hospital they ran a blood test to confirm that the white blood cells in my body had been wiped out.
The week after my treatment
I had steeled myself to feel pretty bad for a couple of weeks. But the strongest body armour can’t help you from the thoughts within.
The growing doubts – and fears.
The hardest thing to deal with hasn’t been the physical side-effects; but the burden of feverish ghosts and dreams. This week all of my gremlins and boogie men have come out to play in my fitful sleep, my fears for the future dressed up in the ridiculous white-sheets of halloween <<My eyesight. My ability to walk>> I’d been warned to expect a possible relapse in my MS symptoms – and so it has proved.
Several times I have had to lie down on the dining room floor as a spinning vertigo has pulled to the left… to the left….
I trust in what I have been told: that such collective flare ups of past symptoms are not unusual. But for them to be here all together feels like a scary portent of the future: I am losing my balance when I move my eyes too swiftly from one object to another; my legs are shuddering with spasms and shakes whenever I leave them still for too long; and the touch and movement of my hands seems disconnected and removed. I have pins and needles; numbness and hypersensitivity. Lethargy. My vision feels wrong; I can’t walk more than a few metres at a time; and need the loo with seconds notice.
This week, I hope, will pass (yes – it will) – but I take it to represent what a worsened condition would be like… all the time. It feels pretty crap if this is my future… there sure ain’t no cycling going on here.
Talk and Tears
Before last week I hadn’t talked to many (or any) other MS sufferers. I hadn’t really talked to many other people about my MS, full stop. Then suddenly, all at once, there was a stream of patients sitting beside me, phone calls with old friends and family visits.
Since I was diagnosed in March, my conversations about MS have been released like my Lemtrada: in little drips, a bit at a time; drops which I was happy to let go when I had grown comfortable with their form. But this last week was like a sudden flood, inundating even my most guarded thoughts, many of which I didn’t even know I had.
As other patients described their symptoms & their lives I often felt choked – as they described places which maybe one day I’d go; maybe places I’d already been. I learned that, behind whatever apparent calmness I might show, there’s a pinprick of intense sensitivity that no conversation can step around: I can’t be told that MS is “not so bad”; and I get angry when I’m told that it is. I’m sensitive when told that “we all need to deal with it in our own way”; but then I’m defensive if I’m offered advice.
There’s been much introspection (too much?) this year – but not many tears. Then, on the Thursday, feeling swamped at a fellow patient’s tale of how he slowly had to give up his job; and then his mobility, for the first time I felt my eyes prickle. At that moment another visitor, I suppose trying to help, interjected with how terrible a condition MS was.
“A friend of mine has terminal cancer. They say they’d much rather have the certainty of cancer than suffer a deteriorating MS for the rest of their lives”.
The exchange had made me wobbly with a disproportionate irritation. I called an old friend of mine who lives many miles away, and he listened to me talk for more time on a phone than I probably have done for many years combined. Emotions tugged away. My bed began to feel like some lifeless capsule cut adrift from my actual life; some non-descript corner of some foreign field, far from home.
The nurses, suddenly and obviously, were not my family – I felt as though I was being experimented on by white jackets.
I badly wanted to see my wife. And my boys.
When the nurse next attended, I seemed to have shed a few silent tears. (By the way, I found rumours that tears are cathartic to be unfounded – they left me with a headache and a sore throat).
“Don’t worry… it’s the steroids,” she said. “They give you the baby blues”.
“What’s the cure to those?”
“The only known one is no baby in the first place….”
All this talking was proving too emotional for me. The last thing I needed was to get started thinking about my boys…
Now I just want this window of treatment/recovery to end – I’ve had enough of it – I want to get back on with my life.