The cycling space race

Standard

The cycling space-race

An attempt to get Tri-bars, Man Vs Snake, TUEs and Rocky Balboa all in one blog.

Professional cyclists have long enjoyed heavily-tailored, scientific performance plans. Training zones, VO2 levels, hematocrit scores and measures of residual exhaustion. Peaking and recovering – anaerobic, aerobic – and lactate thresholds.

These seems a world away from the trundling commuters I follow down the Bristol-Bath cycle-path to work. Rather than aero-fit, lightweight mesh-suits, they wear bobble hats, ski gloves and work-boots. They ride ill-fitted mountain bikes with slow flat tyres; packed lunch rucksacks; rattling, heavy D-locks; and fading & muddy rear lights.

____________________________________________________________

The cycling lunch club I’ve tried to kick start this year has been a bit hit and miss. Sometimes I’ve been the only attendee; other days there have been 8 of us chaffing at the bit in the sun.

One of my friends has turned up a few times on his off-the-shelf bike (read sporty-looking, but built to be robust, rather than fast). He’s happy to carry the unimposing air of a desk-working commuter, donning a flapping windproof – out for a social chat for his lunch hour. I enjoy his company. And, although a strong cyclist, he gets slightly left behind on some of the steeper hills.

This summer he also set a new club record for a team 30 mile time trial.

Photos of his rides reveal a scarcely recognisable bike, and man. His gleaming carbon race bike, the black frame unbroken by neither decal nor logo, fairly drips with speed; his wheels’ spokes have been replaced by expensive looking solid discs; and the forward pointing, horizontal handlebars look about a foot too low to be comfortable. Even his water-bottle is a strange, streamlined shape, tucked neatly away to avoid ruining his ‘lines’.

His all-in-one skin-suit looks like a tattoo (eyes up, ladies), and his shoes look as though have been wrapped in bright cling-film to better slip through the air. His helmet looks life molten plastic dripped onto his head as he’s entered a wind tunnel. Even his gloves look as though they’ve been painted on.

He knows what all racing cyclists know. That lunch clubs are not there to race. Overtakes on the Bristol Cyclepath en route to work shouldn’t be a cause of satisfaction.

If you want to race, train to race…. then race.

But to race at this level (/his level) doesn’t come cheap. Nor, of course, do these levels of fitness and power come easy.

Consider, though, how any quest for self-improvement blurs the two:

The fairest, truest times are against yourself – same bike, same conditions, from a week before. Or a month ago. Or from last year or the year before – seeing if you can get your body to evolve to the demands you make of it.

For my part, I’ve spent many weeks entering time-trials ridden around Chew Valley Lake – trying to chisel down a faster time, whilst acknowledging the variances in wind speeds and direction, isobars, humidity and so on (et cetera et cetera ad infinitum).

I was enjoying the challenge – and was shaving down my time by handfuls of seconds.

Then I bought some (cheap) clip-on “tri-bars” (these hold you, the cyclist, in a more unbroken aero-position), and my PB dropped by over a minute (out of ~23 total) overnight.

I should have felt delighted… but, strangely, this was the point that my interest in time-trialling began to dwindle.

Progress began to feel like a factor of how much money I was willing to spend.

_____________________________________________________________

Last week I watched a documentary called “Man Vs Snake”: one man’s journey to set a computer high-score, not just his own PB, or the best ever score on his computer, but the best score ever. In the whole world. Out of everyone that had ever played the game. And, I suppose, this is the crux of these quests for self-improvement: at some point, you wonder how your “self-improvement” compares to everyone else’s. For these are the arenas where glories are won – in bird’s nest stadiums, public leaderboards and trophy rooms, not within mental notes-to-self regards week-to-week differences between social TTs. And the problem with these public arenas is that this is where ‘others’ can spend their money on all the lighter-weight tri-bars; solid disc wheels; and molten-plastic-dripped helmets.

And in a professional cycling world, willingness to spend that money becomes willingness to add all those other marginal gains. I echo the above: to race at this level doesn’t come cheap. Nor, of course, do these levels of fitness and power come easy. Pros have to tick-off the latter, so that they’re being efficient with the former. Neither this blog (nor it seems the whole internet) is big enough to nail down the moral rights and wrongs of Bradley Wiggins’ TUE steroidal asthmatic injections – but if the “kit” isn’t the same, if the “base lines” aren’t aligned, how can efforts at self-improvement be fairly compared? How can I be expected to keep up with that guy riding a carbon space-ship?

Last winter, amongst my cycling friends in Bristol, a new device was in town.

As the roads freeze over and the rains come down, there has always been a retreat to indoor spin classes and garage-based turbo trainers.

But this year the craze seemed to explode. Indoor bikes can now been linked up to laptops and the internet, and riders can “race” friends, avatars and other assorted pixelated AI-creations around any famous course or climb you could mention.

My friends did so, and my friends got fast.

They could assess the threshold levels, heart rate zones and suffer scores that were once the preserve of the pros.

And it worked.

Meanwhile, I slowly rode my commuting bike with its knobbly tyres, in the rain. With my pins and needles.

For my part though, when the winter skies were clear, I got to see Orion’s Belt in the early morning darkness.

________________________________________________________________

Some of the scenes from Rocky II still stick with me from my child-hood. (Paraphrasing from imdb.com) Rocky’s boxing-foe, Drago, scientifically uses high-tech lab equipment, steroid enhancement and has a team of trainers and doctors monitoring his every movement. Rocky, on the other hand, throws heavy logs, chops down trees, pulls an overloaded snow sleigh, jogs in heavy snow and treacherous icy conditions and climbs a mountain.

The film leaves the viewer in no doubt as to the romance of the two approaches.

But maybe, amidst all the other suspensions of disbelief you’re asked to hold for their final fight, the fact that Rocky ultimately actually triumphs despite the above is perhaps the least believable. But the viewer knows that it is Rocky that holds the soul. Not the science.

__________________________________________________________________________________

Back to CyclingWithMS.

It has become cycling when I can.

When I can, I cycle fast.

When I can’t, I am relieved I can still ride my bike.

I race myself on hills where I know my PBs.

I fight my MS when it tells me I’m weak.

And when I race new found friends at lunch-club as they don their heavy commuting shoes, billowing wind-sheets and cyclo-cross bikes, I don’t forget who my real race is against.

Winning is being there, on my bike, for another day.

When, like now, I’m off my bike, I do need to acknowledge that there are bigger things at play, but I can’t escape the feeling that I’m getting spat out the back – and life is so much easier when you’re cruising at the same speed as the pelaton surround.

 

 

 

Advertisements

Lemtrada Round 2. Tales from the turf.

Standard

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.

Touch wood.

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.

Lemtrada Round 2

Standard

My second course of “Lemtrada” is about to start in 4 days time.

To bring you up to date, I was diagnosed with a degenerative neurological condition called Multiple Sclerosis [“MS”] 18 months ago. Because of its aggressive progression, I opted for an aggressive treatment – and had my first bout of chemotherapy treatment in October 2015. The drug of choice was Campath/Lemtrada – and the recommended treatment was for a second dose 12 months later i.e. now.

Trying to understand, yet alone relaying, exactly how the drug 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.

For me, despite all the vast wealth of opinions, reports, studies, blogs and pamphlets available, my decision last year 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 Round 1…. 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.

Last week I signed-up for Round 2.

Having already completed Round 1, you might have thought that this second decision was a foregone conclusion – but the stakes are high, so, in my anxiety, I did feel compelled to re-visit.

At the highest level, nothing has changed:

The “pros” are still 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.

But, drill down into the detail, and I’m another 12 months older. With new concerns to fret about.

This last year has followed the same pattern as the preceding 6. During the summer months I was largely in good health. Residual MS symptoms chiselled away, but they were rarely amplified beyond an ongoing background noise.

I rode my bike across the Alps.

But, scroll back to last February and March, I was laid low by the mix of a Lemtrada hang-over, MS fuzziness and winter colds. The most debilitating symptom was a new one: disabling vertigo that brought me to the floor; a spinning head dragging me down to my left. I started to feel badly disorientated in crowds, or in noisy environments, like busy cafes or echoing rooms.

And this October, I have, again, spent more days ill than at work. I’ve been suffering a symptom I struggle to articulate, but perhaps best described as a mental-fogginess or confusion (see my last blog). I’ve been finding it very difficult to work because looking at a computer screen has left me feeling dizzy and dislocated; and my cognitive function has been scrambled to the extent that I’ve been moving my cursor across the screen before realising that I can’t remember why, or where its heading. The fatigue has been bad – and I can’t give my body enough sleep. Right now, I’m absolutely sick of being sick.

Before my MS diagnosis, I struggled to articulate something that I knew was “wrong”. Now I have been diagnosed, the above are symptoms that I want to (need to) tackle with as much energy and fight as I can muster.

All this combines for an ongoing “tick” for Lemtrada Round 2.

However…. the biggest thing nagging away at me is this term, “elective procedure”: I’m choosing to have this done.

I’m choosing an illness and a hang-over that, last year, lasted ~5 months.

I’m choosing cold-sores, body-rash, vertigo and nausea.

But, most of all, I’m choosing risk.

Despite the malaises of the mid-seasons, this summer, I was fit, healthy and happy and life was pretty much as good as it gets. MS may have been murmuring, but I was in charge.

It makes me think how gutted, how absolutely gutted, I would be if I chose this treatment and it ended up jeopardising that.

My pre-treatment appointment last week reinforced this. Since NHS certification in 2014, 20 patients have been treated at Southmeads Hospital. This year, tragically, there was the first fatality. A patient died having contracted Listeria in the aftermath of their treatment. To have been diagnosed with MS and to have then gone through the same difficult risk:reward decision-making process as me, only then to have been unlucky enough to be the one ‘outlier’ – the one that statistically “can’t be you” – makes my stomach knot in empathy, tragedy and an undirected sympathy to a family I’ve never met.

This fatality does not (of course) translate to there being a 1-in-20 chance of dying at Southmeads Hospital, but the news did push me into some more internet-research.

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.

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. However, “one” is now being countered by monthly blood-tests for all Lemtrada patients (which should pick up ITP issues). Recent cases this year have meant that monthly blood-tests are now being advised for 10 years post-treatment, rather than just the 5. The second, sepsis, is still an unmitigated (and unmitigat-able) risk. As is the Listeria that killed a patient in Bristol. The only defence offered is extremely careful guidance on post-treatment foods (no white cheese; nothing ‘mouldy’) and hygiene.

In amongst all these statistics (lies, damn lies and random web-based blogs), I must remember that 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.

To finish with, 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.

Brain Fog

Standard

I’ve always written something of a journal. Today, dusty travel-diaries have been replaced by notebook keyboards, websites and blogs.

Much of it I don’t share, and perhaps I don’t always get the balance right: when I re-read past blogs I sometimes find myself embarrassed at their self-obsession. And melodrama.

 

Over the last fortnight I haven’t been well again. The summer-season is turning into autumn, so this is par-for-the-course for me.

I’ve been bedbound. I’ve been off-work. I’ve felt empty and sapped – dizzy and tired with incessant rumblings of vertigo and blurry vision.

10 days off my bike.

These symptoms aren’t that easy to articulate. “I’m not feeling great,” is the lament my wife keeps hearing, so I did some writing in an effort to find the right words.

There are more good days than bad days. It’s the surprise of a bad day that means it gets written about. It’s when I start writing about the good days that it’s time to start worrying.

_____________________________________________________________________________________________________________

Brain fog

It feels like there’s a glitch in the matrix, or wrinkle in space-time – and it is clicking like a badly indexed rear derailleur searching for the right gear to run smooth again.

Like the emperor’s new clothes, everyone else seems to be continuing as normal, so I question whether it is only me that senses we are all in a dream….

Like when the soundtrack to a film falls slightly out of line with the scene at play – it takes a while to work out quite what’s wrong…

Like I’m dreaming a series of deja-vus.

I feels like there’s a dark spot in me. Which is ironic. Because the MRI scans highlight them as spots of brilliant white – like they are cleansing drips of something pure; rather than dotted warnings of decay.

_________________________________________________________________________________

As the fall-out from another house move this year settles, I unpacked another box of old photos.

Pictures of me as a child. Pointing at ice cream in the garden; wrapped up in gloves in the snow.

I show my own children. That was me. The very same me, many dreams ago. I remember a memory of seeing those photos before. And I remember remembering how they were once taken.

I show them photos of me backpacking around the world. I remember those places too. But I look so young. My skin seems so translucent compared to now. And, although I could never see it at the time, it’s now clear how much my eyes look just the same as my cousins’.

I remember being hungry as I tightened my budget. And remember eating pancakes on the beach.

But I was a different person then. It seems like a world away.

London in my twenties now blurs with my days at school. One of my flatmates from that time was also one of my best friends from my teens. He visited me here, at home, a fortnight ago, which somehow added to this feeling of other-worldiness. I couldn’t catch whether his face had changed from when he was 13 or 27. I hugely enjoyed his company – but we weren’t the same people as we were then. There’s photos of us on night’s out that I don’t remember being taken.

There’s also a photo of me taken minutes before my son was born. I don’t remember that being taken either – but, again, what strikes me is how young my eyes are. How young my face was. I catch myself thinking, hasn’t that just happened? But it was almost 10 years ago – and those days of living in Cardiff now feel like a dream.

We lived in Australia. I remember the smell of my favourite coffee shop, and the sign on its door. But not what it looked like inside.

I remember cooking Lemon Cheesecake with my son – but the fact that he was only 2 years old feels like a disconnect. In photos I look tanned. And don’t have a beard. I muse that I will not have known then where I would be living now.

Living in Bristol was only 2 years ago but it seems no more recent than my days in London. I check again, puzzled that these memories are not fresher as they are more recent. But they all feel like a bit of a haze. I remember feeling very, very tired. And lying down on the kitchen floor. Or maybe I just remember a photo I’ve seen of me doing that, my boys laughing that I should get up.

We have lived in our current place for 2 years too, but I can’t picture in my mind’s eye what it was like when we arrived… or what we were like. I do some mental arithmetic which confirms that we had our two boys then. But these memories could easily sit a decade ago. Before, or after, London. Or Cardiff. Or Australia.

Then last week, I was cycling to work. But this memory seems no more recent than those times I used to ride along a beach outside Fremantle, WA. I had a moment when I almost ‘came to’ as I pedalled, like I’d just woken up. Momentarily I couldn’t remember where I was going – and, at that point in time, I could have been on that Western Australian cyclepath. Or riding across Battersea Park. Or in bed, asleep, having this dream. I stared at the road in front of me and the sensation passed after maybe 10-15 seconds – it was a Wednesday in Bristol. I checked my back-pocket – and, yes, my Staff ID pass was still there. The early morning darkness was of late-September, not February or March.

I feel that something isn’t quite “right”.

Like I’m dreaming a series of deja-vus.

The school run today was fairly standard. I battled with my younger son for 10 minutes to get him to wear his jumper, and we eventually kerfuffled out of the house a few minutes late. Upon arrival at the school gates, he was just in his T-shirt again.

I walked back home, got the jumper, and back to school again.

Nothing had really moved on. The same parents were there. Those I made eye contact with I smiled. I couldn’t remember whether I’d already said hello to them. Or thought that I was about to, or just had. Or was I just remembering the sight of them 5 minutes before?

I think I’m tired. And need to sleep. Trying to think clearly is making me more so – like the thoughts that I’m trying to catch keep accelerating, tantalisingly just beyond my reach. I forget what it was I was trying to think of in the first place- so return to a mental list of tick-boxes to satisfy myself once again with where I am (and when). I lost my mobile phone – left, I think, at a playground in Corsham as I pushed my boys on a swing.

Those photo albums don’t seem to make much sense, let alone matter anymore.

The past of bright eyes and youthful face.

 

The trees outside this window have turned autumn yellow just this last couple of days.

The seasons are turning.

Deja-vu.

 

I remember spending a week of a summer holiday up in Scotland with my Granny.

“Weeks go by so quickly, Granny”, I said.

“At my age”, she replied, “it’s the decades that disappear.”

 

I google quotes from Buddhism: “do not dwell in the past, do not dream of the future. Concentrate the mind on the present moment,” and, after 10 days off, I get on my bike again. I felt very ill.

_____________________________________________________________________________________

 

Inception

Saito: Have you come to kill me? I’ve been waiting for someone…

Cobb: Someone from a half remembered dream.

Saito: Cobb? Impossible. We were young men together. I’m an old man.

Cobb: Filled with regret…

Saito: Waiting to die alone…

Cobb: I’ve come back for you… to remind you of something. Something you once knew…

Cobb: That this world is not real. To take a leap of faith. Come back… so we can be young men together again. Come back with me…

 

I’m young still. These murmurings of discontent must pass.