Let the games begin – Lemtrada Round 1

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So the day has come.

Let the games begin.

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My immune system is misfiring – which is what is causing my MS.

Whenever my immune system is activated (for example, when I catch a bug), it struggles to differentiate between the virus (or infection) and other stuff it shouldn’t be attacking (most pertinently my spinal cord and brain).

In theory, the chemotherapy that I am starting today (a week long dose of Campath/Lemtrada) will wipe out the misfiring elements of my current immune system – leaving my body to then re-boot a new/better one… hopefully without the existing flaws.

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.

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In the short term, there are concerns about the side-effects. These have been carefully explained to me (to the extent that they were set-out in writing).

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.

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So what’s so bad about where I am that drives this willingness to accept these risks?

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 in 2015 through hail, heavy winds, sun and rain. On ice, trails, tracks and roads. Through congested city centres and across deserted plains.

But in 7 months since 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.

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 good. But this is immaterial. The stresses on marital and family life have been considerable.

There hasn’t been a single day since February that I haven’t suffered from residual pins and needles and sensations of tingling numbness.

And I been amassing new MS symptoms with apparently reckless abandon.

The identification of relapses is an art not a science, but it seems that 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.

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.

This last fortnight seems to have been designed to pave the way for my treatment: 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 an exhausting fatigue that has become all too familiar to me. Irritable at home and at work. Sleeping 11 hours a night. This time (“bout”?) the “lassitude” lasted 8 days (it’s nearly always 7 – 10) – like clockwork.

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 adrenilin (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 the one response I’ve been able to retaliate with, 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 treatmen you do twice.

So I hope it aims carefully and with certainty.

Right between MS’s eyes.

So.  Let the games begin.

Bounce-back-ability

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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.

October: H-ill Season

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October.

Suddenly the mornings are getting dark. And colder.

As I commute to work, I’m now setting off in moonlight rather than daylight.

This is not my favourite month.

It is also the time of year known to Bristol’s cyclists as “Hill Climbing Season”. There are a series of annual hill races, short sharp sprints against the clock to round off the cycling year. They’re easy events to enter: they’re run “time trial” style, one rider at a time (so you never get left behind); and no one really notices what times you post (so there’s not usually any embarrassment necessary – although my times do their best!) I’ve tried to enter 3 or 4 of them every year – (to participate rather than to compete) – but note that I had to be careful with my wording: I say “tried to enter” because October is also my own personal “Ill Season”.

Before I had my MS diagnosis I’d had 4-5 years of intermittent bad health. I became so frustrated I had started to keep an “illness diary” in an attempt to try and find rhyme or reason behind these apparently unconnected bouts of malaise. These diaries now form damning evidence for the crap-ness of October. I took to highlighting periods of time when I was either off work; or unable to cycle. I can now see that in every single October for 4 years I missed at least 5 days of work through illness (“bed bound”). Over the same time period, I had highlighted an additional 16 days when I was too ill to get on my bike (“chair bound”). So, historically, in October I’ve been spending 1 day in every 2 either bed bound or house bound.

The fact that I log all my bike rides on the website “Strava” just adds to this compelling evidence because I’m in the habit of adding “ride titles” which keep a record of what I was doing, with whom and where (I’ll pause for a moment for you to digest this geekiness…) With hindsight these past October Titles now seem to read like great big flashing MS warning lights: “Felt strangely lethargic on the bike today”; “Couldn’t get much power today, legs felt numb”; “Felt tired on the bike despite 12 hours sleep”; “Felt awful today, went straight home to bed”; and, what now seems like an MS classic, “Not sure what was going on today, felt as though I was losing feeling in my legs”.

Now I know that I have MS I’ve tried to work out why Octobers have been so bad. February/March are exactly the same. The pattern then seems to be that I am in relatively good health through the summer. I think I need a team of experts to look at this and unravel the clues – there seems as if there could be all sorts of reasons: from pure coincidence or psychosomatic winter-based depression; to vitamin d levels (which come from sunlight); or the simple prevalence of a new season’s minor bugs and colds which seem to hit me with such exaggeration.

With disappointing predictability, this last week saw my eldest son ill in bed with a fever and a heavy cold. My youngest was up all last night with his own terrible cough. And this weekend was the “West DC Hill Climb Weekend”: four hill climb races over the 2 days. I entered them all weeks ago. Predictably I woke up myself on Saturday morning feeling crap. I’d had what can only be described as remarkable “night sweats”, and felt dizzy with the sniffles and itches of an impending bug. Just as night follows day, I then registered 2 pretty slow times one after the other. Slower than my already modest times of last year.

Then on Sunday morning I woke up feeling great. I felt like an embarrassed hypochondriac after my concerns of the previous day, but then registered another 2 slow times for the day’s events…. <remember not to let MS become an excuse.>

Yep… welcome to October.

My chemotherapy treatment is due to start in 3 weeks. I need to remember that, some days, I should be happy to be at the start-line, still smiling, still riding. Who cares how fast you go.