Six weeks post-Lemtrada. The Force Awakens. A New Hope.

I have found the last 6 weeks, post-Lemtrada, pretty hard.

I’ve been struggling with vertigo, a deep-seated fatigue and general malaise.

I very much acknowledge that, in some ways, I was probably not making things easy for myself: I couldn’t come to peace with my new predicament. I burned with frustrations and cabin fever; and I couldn’t resist over-doing things when I felt ok. Although I acknowledged these flaws, I failed to compensate for them and couldn’t seem to alter my emotions or behaviours. The fact that I couldn’t even change those things within my power makes me feel a bit embarrassed – and full of fuss.

My head knew that I was still alive and well; happy, with my two healthy children. My spirit, though, felt angry and battling, reeling in a fight.

Then, on Monday this week, I got out of bed and for the first time in over a month, I didn’t immediately have to pause for my legs and arms to stop shaking with spasms. I walked to the bathroom, and for the first time in over a month, I didn’t immediately feel awash with vertigo. I commuted into Bristol and, just about, did half a day’s work (although this was cut-short at lunchtime by a knock-out bout of vertigo worthy of Tyson Fury).

On Tuesday, I took my winter bike around some of the local canal paths. My vision was disorientating, and I felt dizzy and tired. But this counted as a bike ride. (In the rain). I had so missed fresh air.

On Thursday, I cycled up a hill for the first time in many weeks. I might have felt as weak as a kitten – but this was how things will get re-started.

Fast forward to today, Saturday. I’ve now got a full day’s work under my belt; and I’m contemplating the start-line (maybe the ride?) for tomorrow’s charity bike ride with my club, Bristol South.

I’ve had a few more glitches – I (embarrassingly) completely lost my balance at work as I stepped out of a lift; and vertigo continues to kick-in from time to time during innocent conversations… so I’m not “back”. Not yet. But it now feels as though I’m on the right road. As soon as I was able to get out on a bike again, my mood changed. My spirit improved almost immediately and I could feel my “internal engine” kicking into gear again. I feel as though my will; my hopes; and my optimism have returned. In the absence of being able to walk (let alone jog or run), this is why cycling has become so important to me.

My life-force.

Last night I booked us family tickets for the new Star Wars film.

“The Force Awakens” indeed.

Game on, 2016. Full of “A New Hope”.

 

4 weeks post-Lemtrada. On a bike, not at work

Lemtrada plus 4 weeks.

I am improving. I am getting there. But it feels like progress is very slow.

Last weekend, for the first time, I was out on a bike. It felt a bit wobbly (I felt a bit wobbly) – but it was hugely spiriting to feel some fresh air on my face. Things were definitely moving in the right direction. Turning “glass pedals”, wrapped in layer upon layer to keep out the cold, I, at least, felt as though things were going to be ok.

The air was crystal clear and the sky was blue.

Happiness seemed so uncomplicated.

________________________

To add a sense of challenge to my “Lemtrada” treatment, the last few weeks have seen, firstly, a house move; and then, secondly, my wife losing her job. As is often the case, timing could probably have been better. This undercurrent (overcurrent?) of stress has been somewhat exacerbated by the fact that I’m not getting any sick-pay during this current period of recovery – I’ve long benefitted from the freedoms of being self employed, but sadly sick-pay is not one of them. With all this in mind, I made a bid today to get back to work. The financial imperative.

What a disaster.

It went wrong before I’d even arrived. As I tentatively commuted in by car, another driver crashed into me whilst I sat stationary at some lights. A crumpled bonnet, smashed number plate and a sore neck & head. Could have been worse – lucky I wasn’t on my bike.

When I first got back to work, I couldn’t remember my laptop’s 6 digit user ID. The same ID I’d used every single day at work for over a year. I really hope my brain hasn’t turned irreparably to mush. I panicked that I couldn’t remember my colleague’s name… and I wondered how long I could hope to maintain the pretence of a job if my mind has actually ceased to function…

Despite leaving home a good hour early, I was then running late and had to hurry to my appointed training room without having lunch. (I was due to take a training session of perhaps 15 attendees).

I didn’t have any time to prepare, and had started talking to my audience before I’d really had a chance to compose myself. It quickly became apparent that I couldn’t focus on my screen. I was trying to use my laptop as I illustrated points on an OHP – but the focus, then re-focus, on more than one screen was too much for me: the dreaded vertigo kicked in. I started to hear, and then listen to my own voice as though it was somehow disconnected from anything I was doing. A thought flashed into my head that maybe I was dreaming… and then a second later a panic that I was maybe going to faint. Mid-sentence, I paused… sat down… then announced that I couldn’t continue. A colleague gamely stepped in, as I exited stage-right and adopted the brace position.

I wondered if I could get away with charging 2 minutes of time for the period that I had actually been talking. I wondered if I’d be able to get back home safely. I felt very ill.

Happiness can be so uncomplicated. What a shame that we can’t always just be so.

 

 

 

Acceptance?

Reactions to a diagnosis (in my case of MS) are widely described in literature as following similar patterns to a bereavement:

Shock – perhaps confusion or denial;

Anger;

But then acceptance.

One of the (several) emotional conversations I had over the last few weeks was with a fellow patient who had symptoms extremely similar to mine. He was the same age (almost to the day) – and was even (slightly spookily) of similar appearance. But he had been diagnosed much earlier than me – some 3 years previously.

In the last few months, triggered by symptoms very similar to what I had been experiencing, he had stopped full-time work; and “retired” from his sport (where he had reached a decent level). He now used a walking-aid when his symptoms were at their worst.

He was quite incredibly calm and phlegmatic about these concessions (or, at least, described himself this way). I tried to articulate the amount of fight I still felt I had – but he was philosophical about this as well. His story was that he had been ‘furiously angry’ for 2-3 years after his initial diagnosis (I think he had taken out a lot of that anger playing ice hockey which was perhaps why he’d got so good at it!), and his marriage had fallen apart. But he believed that he was now calmer and happier; growing with his condition – living with it, rather than fighting against it.

I still have not accepted the changes that MS is bringing, will bring, to my life. It seriously agitates me. I wonder if, in time, this will calm, and I too will reach my own acceptance of sorts. But I wonder, too, if this is really what I want – or part of what I want to fight.

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As I re-assess my cycling, there are different levels of concern. Firstly, there is immediate tolerance: can I keep cycling through whatever symptoms I’m suffering? Secondly, there is the worry of long term damage: is being out on my bike worsening my long-term prognosis in any way?

Immediate tolerance is something I can probably answer for myself. I can either cope with it – or I can’t. My current symptoms of foot and leg pain I’m assured are not going to be exacerbated by exercise (when I say “I’m assured” – I haven’t actually been “assured”, this is just what I’ve been told).  But, at the moment, the flow of being out on my bike is the only thing that I’ve found which takes my mind off these incessant pins and needles.  The absence of any leg strength is depressing and exhausting – but I’ve resolved that whenever I come to a hill to use the smallest gears and gently ascend at walking pace as commuters young and old slowly overtake. Harder to cope with are my vision issues; and MS-related exhaustion, which arise suddenly and without warning. These are not only stop me on my bike but also seem to wipe me out for days afterwards with all the impacts on family and professional life.

Long term damage is harder to resolve. And I’m just going to keep on asking the question of the experts, doctors and anyone who knows more than me. Is cycling-related fatigue just being tired? Or is it worsening my long term chances? A day in bed is worth it for a weekend of cycling; but increased likelihood of disability is not. I understand that you need rest to recover from illness – but how deep into the “red” can you go? A fast 30min sprint, or a slow 12 hour touring ride? Or neither? And, wrapping around this whole issue, is the psychological benefit of being happy – does this alone offsets all those physical stresses?

I don’t think I’m yet ready to concede what has been my passion for over 20 years.

My love of cycling is love of being free. Love of being outdoors and of long descents, and of tailwind speed. But it is also love of the battle. The test. The hair-pinning climbs and horizontal rain. The coffee stop when you were too tired to carry on, or the sudden sea view after 2 hours of ascent. Should these things stop now?

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I’ve also read that some elements of coming to terms with an MS diagnosis could be compared to a ‘mourning’ (I guess a selfish mourning for a lost future that you now need to change?) On one hand, I feel as though I’ve absorbed all this new news with surprising ease (but this might well be a failure to actually fully realise it all) – but then, on the other, there are moments which trigger a disproportionate emotional response.

What am I ready to give up? And what can I cling on to?

Three weeks post-Lemtrada. Teaching an old dog new tricks

Three weeks since Lemtrada and I’m still largely house bound. I’m deeply frustrated by my current lethargies and am not dealing with this relative immobility too brilliantly.

When asked how I am, I complain about an ongoing issue with my eyesight; and a debilitating vertigo that seems to strike 3 or 4 times day, almost dragging me to the floor; and I mention an ongoing exhaustion, which I can’t seem to shake. But what I’m struggling to cope with the most is inside my head. Inside I’m so angry at these lost days; these opportunities at life which are passing me by.

I can’t help but wonder whether its the same for everyone- or whether, for some reason, I’m particularly ill-suited to these changes; or just stubbornly unable to accept them.

__________________________________

My two boys wrestle on the floor. Again.

They’re  incessant bundles of frenetic energy, and don’t seem to do much else.

There’s a 4 year gap between them – a space that the younger one furiously tries to bridge (on determined repeat).

Although they’ve been brought up the same way, they are undeniably different boys – special, of course, in their own ways 🙂 Who knows which brief moments in time have most formed their personalities; and which strands of their DNA pushed them one way rather than another? Whatever “they are”, of course, they come (at least, in part!) from me.

From a young age I, too, have always had a restlessness; and what is becoming all to clear is that, however I was born – whatever it is that I am now – I’m certainly not well-equipped for being a patient. I feel that there is some poorly understood process within me, something that compels me to get up at 4am on a rainy February morning to cycle 200km, that sits particularly poorly with being largely housebound for (what is now) 22 consecutive days.

In fact, it’s driving me mad.

What gives me the compulsion to get up at 4am and cycle 200km? It’s a worry that I might miss out. I hate any feeling of life passing me by. And, at the moment, it feels as though it’s slipping through my fingers at the rate of knots.

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Reading more about MS – and the possible behavioural traits associated with it – a “nervous energy” is described as being particularly typical. I don’t like the term “nervous energy”; it feels negative and implies some sort of anxiety, unease or dissatisfaction, none of which I (want to) relate to; and maybe I’m extrapolating my own paranoid sensitivities here, but it also seems to imply a certain degree of self-centredness: whirring on my own hamster-wheel at a different pace to others. I don’t like that thought.

But, although I might not like it, in parts, I confess, the cap does seem to fit.

And, as I get older, I do wonder if it’s getting worse.

After I left school, my back-packing days (which were seminal times for me) certainly didn’t bring me to a calmer acceptance of my place in world. Instead, the most significant perspective I seemed to glean was of the temporal fragility of it all: how I was to be forever fated to miss so much more than I could ever see. This panic of mortality only enhanced my desire to see and do as much as possible, as quickly as possible, before it all turned to dust.

It feels as though I now need to learn some new techniques for life because my philosophies and life-skills that have been slowly developed don’t seem to be so appropriate anymore. Maybe I have to consciously unravel a bit of what I am, and teach myself to change.

I don’t want Valium to the be the answer to it all.

Lemtrada Round 1: treatment done; recovery ongoing.

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.

 

I hope you enjoyed reading this post. If you did, I’d really appreciate it if you bought a copy of my book, CyclingWithMS. All profits go to the “MS Society”. It’s available from Amazon, the e-version for barely the cost of a coffee!: https://www.amazon.co.uk/dp/B07HZ2MW97

If you did not enjoy reading this post, I’d really appreciate it if you bought a copy of my book, CyclingWithMS. All profits go to the “MS Society”. Details are above.

 Many thanks

Lemtrada Round 1

The Lemtrada decision – treatment minus three months

For me, despite all the vast wealth of opinions, reports, studies, blogs and pamphlets available, my decision to go-ahead with Lemtrada was largely based on the act of the drama that was my 30 minute meeting with my consultant. He was very keen that the decision be ‘mine’ – so I questioned and questioned him about the risks, and the benefits, and then signed-up for this chemotherapy treatment…. soberly so, but confident enough that I had tried to make a decision as dispassionately as possible, about a subject that is just about as emotive, or passionate, as they come.

Feeling now, as I do, so much better than earlier in the year, it felt odd signing up to a course of “Lemtrada” treatment in a few months time. This is a mild chemotherapy designed to modify my misfiring immune system. It will involve a week in hospital; probably plus several weeks of illness afterwards (and the very real risk of some serious side-effects). But in making the decision to go-ahead I only had to think back a couple of weeks to the day I lost the ability to walk. I might be feeling good now, but there’s something going on in my body that I need to take action to stop.

Trying to understand, yet alone relaying, exactly how Lemtrada works gets me into cognitive deep waters – so probably best just to summarise its processes as a “re-booting” of the immune system. I can liken this to a return to ground-zero – like switching off a frozen laptop – when it turns back on again, the theory is that the bugs will have disappeared. The magic of the human body, or I guess of the laptop in my example above – is that the user doesn’t need to understand how this “fix” happens… it just happens, out of sight, hidden deep within the inner machinations of a body’s atoms, molecules and DNA.

Because I, the patient, cannot truly get my head around the exact details of immunity-replenishment (I soon get lost when told that Lemtrada will be attacking my lymphocytes, monocytes, some dendritic cell populations and, to a lesser degree, natural killer (NK) cells and other leukocytes), I have had to rely on the guidance of my (trusted) neurological consultant, coupled with a bit of high level, largely web-based, research. The problem is that the guidance is not black and white. The treatment has the risk of some potentially very serious side-effects – the decision to commit has to be balancing act between risk and reward; cost versus benefit. It becomes an “elective” medical procedure (e.g. one made by choice) rather than an “acute” one.

At the highest level:

The “pros” are based upon the analysis of large data-pools which show that (statistically) MS patients are likely to suffer fewer relapses post-Lemtrada, and have decelerated disability scores – both, very roughly, by a factor of 50% [MS Society].

The “cons”, again, are probability-based. The “chances” of thyroid dysfunction are still ~40% [MS Society]; the risk of something more serious – you can’t get more serious than death – are small, but not zero. More minor side-effects are much more likely, but I still take the view that, if these are short-lived, I can tolerate them if they’re offset by long-term benefits.

The web is a dangerous place to try and research ‘science’. I quickly happened across a blog written by a patient just starting their first course of Lemtrada: “I’m nervous because there’s 1 in a 1000 chance of me dying because of this treatment” [my first reaction was that this must be an ill-informed statistic]; and others which discussed the risks in more heart-felt ways: “I want to be around to see my children grow up and have children of their own. If I have to attend weddings and the births of grandchildren from a wheelchair, that is my fate. But I can’t quite accept the thought of dying from my MS treatment and missing all of those things.”

In summary, the most striking points from my internet trawling were:

Firstly, how unlikely you are to actually die, either directly or indirectly from Lemtrada.

The results of clinical trials showed that more patients died having been hit by cars, or by a train, or from motorbike accidents, than by any side-effects [Alz. Advisory Committee Briefing Document BA103948] – (in fact, these, and other such results, did make me ponder quite how many causes of death seem to be lurking around us at every turn!) That said, there were 2 (indirect) deaths during trials (from secondary ITP and sepsis). In fact, ~3% of patients [again, MS Society] suffered from ITP (immune thrombocytopenia) which, to put it bluntly, kills you if you don’t treat it quickly. To put this in perspective, very roughly patients in the clinical trials suffered a similar mortality rate as mothers giving birth in India or Cambodia (to give two random examples) in 2015.

Secondly, although I knew that Lemtrada was a “new” drug, I was surprised at how small these pools of statistical test-data actually were – and how recent.

The major drug trials incorporated hundreds of patients worldwide (not thousands) – and many ‘secondary’ trials only involved tens of patients. Of course, any information regards long-term effects are not going to be reliable for many years – and several critical trials examining secondary risk factors are still only at their early stages.

A bit more internet-based research and suddenly that “1-in-1000” throw-away statistic I quoted above (and initially dismissed out of hand) doesn’t seem so far-fetched: 2 deaths were reported during the clinic trials of a couple of thousand – from caused by ITP, one by a listeria infection. The risk of ITP is now being countered by monthly blood-tests for all Lemtrada patients (which I’ll need to have done for the next 4 years); listeria by reinforced advice regards post-treatment diet and hygiene.

Thirdly, as a ‘Lemtrada’ patient it is important to understand the risks and the side effects that you’re letting yourself in for.

To try and summarise the NHS (and related) blerb is not easy – but essentially the most important percentages are as follows:

• 2% of patients suffer, potentially very serious, autoimmune conditions with serious sounding names: immune thrombocytopenia and anti-glomerular basement membrane disease. But these risks should be mitigated by monthly blood tests, careful monitoring and an awareness of tell-tales symptoms;
• 34% suffer thyroid disorders. Initially this figure sounds scarily high… but should even the worst of these precipitate, again, these should be identified via the monthly blood tests, and would then be combated via a daily pill. Although no one would chose to have to take a daily medication for the rest of your life, this would seem to me to be a bearable solution;
• 71% have post-delivery infections (17% suffer Herpes (which, I now know, is not just a STD)); and
• there is also a small increased risk of lymphoproliferative disorders, thyroid cancer, and melanoma

In summary: 1-in-50 patients suffer extremely serious side-effects (although these should be “caught” early enough with careful through post-treatment blood-testing); over a third suffer serious side-effects, which then need to be managed with new drugs (which need to be taken for the rest of your life); and a majority of patients are inflicted with post-transfusion infections of some kind of another (to varying degrees of severity).

None of these are things to get too happy about – my ready acceptance of these risks should go to show how heavily the spectre of MS weighs upon me.

To summarise my decision:

My viewpoint is that, amongst all these statistics (lies, damn lies and random web-based blogs), I must remember the main pillars of my confidence: the drug has been sanctioned for use in the UK by “NICE” – so it’s now approved by the NHS; the FDA has approved it in the United States of America; and the EMA within Europe.

I must remember that the option of Lemtrada is a blessing, not a curse.

It is a “good” drug, here to help me.

I often think how lucky I am to have been diagnosed now – rather than 10 years ago when I would have been advised to follow a healthy diet – yet, how unlucky I am not to have been diagnosed in 10 years time, by when the current leaps and bounds in stem-cell technologies may have found a risk-free cure.

The NHS, and the tax-payer, is putting its faith in Lemtrada, and in me: a daily dose of the drug costs £7,045. The full (double) treatment costs £57,000.

I hope I can look forward to many years of great health so I can start repaying some of that debt.

 

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The Lemtrada decision – treatment minus one day

At times this year, I have felt as healthy as I ever have been.

I’ve had some wonderful times – with my family; running about our new garden with my boys; and out on my bike.

Cycling-wise, I’ve ridden in time-trials; hill races; 600km audaxes; and up and down some of the most famous climbs in the Alps. I’ve cycled 10,000 miles through hail, heavy winds, sun and rain; on ice, trails, tracks and roads; and through congested city centres and across deserted plains.

But in the 7 months that have passed since my diagnosis, I have only been consistently “well” for perhaps 7-8 weeks: I was happy and healthy in June; then again in September. Beyond that, most months have been patchy at best. I have had to spend far too much time being ill. There hasn’t been a single day since February that I haven’t suffered from residual pins and needles and sensations of tingling numbness. For two (perhaps three) periods I’ve been unable to walk properly and have struggled with stairs and uneven surfaces. There were a couple of times I found myself struggling to sit up. I’ve briefly lost control of various muscles, and my balance; and have been scared by intermittent issues with my eyesight.

My diary reveals that I have missed 20 (twenty!) days of work since February through MS-related (unproven) illnesses and malaise. Career-wise this has not been ideal, but this is immaterial; it is the stresses on marital and family life that have been the most significant.

The identification of relapses is an art not a science,  but it feels as though I’ve been amassing new MS symptoms with reckless abandon. I’ve had 4 (perhaps now 5, see below) relapses in the last 7 months. The average figure for annualised relapses for MS patients is about 0.3 – I don’t have a calculator but I’ve exceeded this by some 30 times.

 

This last fortnight has removed any doubts I might have had about my treatment. I have had another 4 days off work (during a critical period of the project I was working on); two new MS symptoms (that have lasted over 48 hours each so classify (by definition) as additional “MS relapses”; and I’m suffering from an exhausting fatigue that has become all too familiar to me.  I’ve been irritable at home and at work despite sleeping 11 hours a night. This latest period of “lassitude” has lasted 8 days (it’s nearly always 7 – 10) – like clockwork.

In fact, for all the ups and downs of the last year, this last fortnight has been when I have felt the most “beaten”. By contrast, previous lows (bar a couple) have been offset by a surge of adrenelin (initial diagnosis included) – they have almost increased my fight, rather than reduced it. But this last relapse has just been depressing. I’ve been stuck in bed, frustrated. I had to miss my last cycling event of the year – which I had been tentatively training for – and my one riposte, my new MS Diet, has suddenly seemed inadequate and impotent. I’ve caught myself thinking, if I’m going to go down, I might as well go down stuffing myself with delicious fatty burgers and thick chocolate shakes; descending alpine passes on my bike stopping for creamy slices of rich carrot cakes at every turn.

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All-in-all this is a good time for my reinforcements to arrive – just when I appear to be flagging.

So the “Lemtrada” drugs get rolled in.

I see it as a dirty, great big cannon. It’s only got 1 bullet. This isn’t a treatment you do twice.

So I hope it aims carefully and with certainty.

Right between MS’s eyes.

So.  Let the games begin.

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Lemtrada.

The drug’s administration is not unpleasant per se (essentially I’ll be connected to an IV drip for a week), but it’s not without its risks and side effects – and it results in an extreme vulnerability to infection in its immediate aftermath.

I approach my treatment convinced that it is the best option for me, but not without anxiety.

So, off to The Brain Centre, Southmeads Hospital.

Let’s get it done.

 

 

Bounce-back-ability

I found the immediate aftermath of my MS diagnosis a fairly confusing time as I tried to make sense of what it meant for my life and for my future. It was suggested that I start some sort of blog to assemble all my thoughts in a therapeutic way. As I was struggling to find anything in the MS literature that tallied with my interests, hobbies and lifestyle, a blog entitled “CyclingwithMS” seemed to make sense.

Since then it been heartening to receive words of support from family, friends and even interested strangers and other cyclists. One message that has been repeated is that some of the challenges I’ve faced as a cyclist should stand me in better stead for the MS hurdles that lie ahead.

I hope so.

My experiences this year have made me ponder a bit more about what resilience, or mental strength, mean. The ability to keep on (and on), without breaking in the face of an adversity, pain or challenge is certainly a strength of sorts.

But I am increasingly of the belief that it is an ability to carry on after a beating – to keep going after defeat – that is a different kind of strength, but probably one that will become more important for me going forwards. I’m going to have to learn to adjust strategies; to adapt; and to evolve – so that if one approach fails, I can take a deep breath and try another.

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My colleague at work has just seen his son through training for the Marines. He relays that one night-hike physically broke the group. They arrived to their destination exhausted and hungry. They were given 5 minutes rest then told to get up and repeat. Some dusted themselves down and set off – although probably quite slowly… they would have done so again, and again; others stopped right there and threw in the towel.

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With my chemotherapy due to start in 2 weeks time, today I had a pre-treatment appointment.

My progress over the last 6 months was discussed and reviewed. On one side, my efforts at a new diet; more focus on getting the right rest/sleep; and an actual awareness of my condition; versus the knowledge that, just this last fortnight, I’ve been suffering a couple of most unwanted, new symptoms….

The result? 4 new relapses were suggested since my initial diagnosis in March. One relapse a year signifies an MS condition that is in advance; 4 in 7 months is not good news. At all.

It suddenly felt as though I am losing this fight.

Left unchecked, this condition will get worse and worse. Onwards it seeps – if blocked in one direction, it expands in another. I almost immediately retreated mentally to what I am most desperate to preserve – <<ability to walk… ability to see….>> – both threatened this year. Both I do not wish to give up.

Almost time to unleash “Lemtrada”. A drug that 8 years ago didn’t exist. So fingers crossed for 2 weeks time. I need some heavier artillery. And to toughen up. I take inspiration from those who have faced a hundred times worse with a courage that I admire.

I know that MS is not a person. Not an object I can fight in a ring. It’s a function of a mis-firing immune system. Messages to the brain, molecules, biochemistry. Just science…. like the plankton in the sea, or the atoms in the sun. But seeing it as a foe whom I need to beat? That gives me more appetite for whatever might come. And makes me think I can win… so for now, I persist with this illusion.

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In “The Hustler” Eddie Felson (Paul Newman) plays a titanic game of 8-ball, head-to-head against a legend of the game, Minnesota Fats.

As the frames (and hours) tick past it becomes less a battle of talent, more one of focus and of will: (perhaps the more talented player) Paul Newman undoes his top button and begins to look more and more dishevelled, speech slurring with whiskey; whilst Minnesota Fats changes into a freshly pressed shirt, re-slickens his hair and dusts himself down, ready to go again. He was in it, not for the battle, but for the war – for that was what needed to be won.