Windsor resident and cyclist Bob Munro tells the turbulent tale behind his campaign to fund cancer research
To describe yourself as lucky when you’ve been diagnosed as having a rare, incurable bone marrow cancer could easily qualify you for a visit from the men in white coats. But then, what’s another couple of white coats when you’ve already experienced an overdose of doctors during the course of the past four years?
Fortune certainly didn’t seem to be smiling when the consultant treating me for pneumonia announced that I had a tumour.
“You mean cancer?” I interrupted, sensing that this wasn’t a word he wanted to use.
“Yes, it’s in your bone marrow. It’s called myeloma.”
Which, it turned out, 97% of people – including me – had never heard of. I’ve had better news.
Dabbing away tears, I managed to take on board the words “rare”, “incurable”, “treatable”, “new drugs” and “great strides”, but the fact that it was in my bones suggested strongly that I was in big trouble. Surely, once a cancer had migrated to your bones, you were finished? And the consultant’s coup de grace – “Oh, and I strongly advise you not to Google it” – obviated the need for Poirot to confirm my suspicions.
No wonder he felt compelled to offer that earnest, but useless piece of advice: 20% of newly diagnosed patients die within 60 days and only 46% live for five years.
But – and here’s where I start to get lucky – my cup is resolutely half full. Foolishly optimistic, some would call me, naturally focusing on the positives in any situation. And the fact is that Google also gave the average age at diagnosis as 69, with less than 35% of patients under 65. I was 52 and still playing five-a-side football: surely youth and fitness must improve my chances of being in the 46%?
Myeloma crowds out the production of red and white blood cells in the bone marrow, leaving sufferers anaemic and with seriously compromised immune systems, hence my raging pneumonia and immediate blood transfusions. It also attacks bones, often resulting in catastrophic collapsed vertebrae, and destroys the kidneys.
My excessive tiredness (”Stop yawning, Dad”) and stubborn infections suggested I’d had it for a couple of years, but I had no serious vertebra or kidney damage. How different this could have been if I hadn’t recklessly gone skiing with what felt like flu and developed pneumonia, leading to a diagnosis which could otherwise have been delayed for years. Oh yes, that was lucky.
New drugs? Treatable? Yes, and 20 years ago there was virtually nothing, so again you could say that I was…
Windsor Magazine July 2016
You get the picture.
Now, if all this strikes you as a rather flippant recollection, coloured by successful treatment to a state of complete remission, read on. The first day’s treatment – a cocktail of 40+ chemotherapy tablets including the notorious, previously banned Thalidomide – left me hospitalised again for three weeks. After four months, my response to the treatment was ‘suboptimal’. Freely translated: it didn’t work. It also left me blind in one eye, as the blood thinners I self-injected daily sent blood gushing through my retina.
“That was unlucky,” said my ophthalmist. I didn’t see it coming either.
The second treatment also failed to dent the myeloma and left me with permanent numbness in my feet. My consultant then suggested “smashing” it with two doses of a rather nasty cocktail of six chemotherapy drugs at once. Apart from losing my hair, I was relatively unscathed by this. Unfortunately, so was the myeloma. In fact, my biomarkers went up.
The aim had been to lower them sufficiently for a stem cell transplant – a huge chemo blast to the bone marrow followed by a transplant of the stem cells drawn from my blood. But with the biomarkers still high, this plan was shelved. So, after 12 months and four failed, gruelling treatments, my myeloma was classed as ‘resistant to treatment’ and things were looking pretty grim.
But then my consultant prescribed the very latest drug, Revlimid, and the results were almost immediate. My biomarkers began falling to manageable levels and the lower toxicity of the drug meant that I started to feel more normal again.
Resolved to do all I could to boost my chances of survival, I started walking and improving my diet. During 2013, I recovered some fitness and shed the 2 st in weight I had accumulated during treatment – it’s hard to resist chocolate and ice cream when you might have already had your last beach holiday – and then 2 st more. All much easier when it might actually help prolong your life.
My real fitness epiphany, however, had come during my drug-filled sofa residence in the summer of 2012, when I watched every minute of the Bradley Wiggins victory in the Tour de France. For three weeks I swooned over the scenery and marvelled at the athleticism of the riders. And when, a year later, I saw Chris Froome emerge triumphant, it strengthened my determination to give road cycling a try. Like the big kid I am, I imagined myself riding in a peloton into Paris and up to the Arc de Triomphe.
Objections from ‘the Boss’, however, delayed my debut.
“Too dangerous,” she insisted. “Don’t you go killing yourself on a bike now, after all I’ve (sic) been through.”
But in July 2014 I bought my first carbon framed road bike and some very unflattering lycra – all the gear and no idea – and within a year I’d become the fittest I’d been for decades and cycled a 120-mile stage of the Tour de France in Normandy, one day before the pros. If only I’d realised years ago that I was a natural at this cycling lark. Still, as Edith put it: Je ne regrette rien.
At the end of 2014, I turned to fundraising. Myeloma’s peculiar horror is that it mutates, eventually overcoming the current drugs’ ability to suppress it, leaving patients needing newer and better treatments to extend their lives. The most effective contribution I could make was to help fund the research carried out by Myeloma UK, the country’s only dedicated myeloma charity.
But when I approached it to enquire about its cycle events, it turned out that there weren’t any. Bigger charities organise marathons, triathlons and so on, but the rarity of myeloma – there are only around 20,000 patients in the land – had left the smaller Myeloma UK doubting the viability of such mass participation events.
Having witnessed the exponential growth of cycling and the Mamil – middle-aged men in lycra – demographic, and researched the logistics of staging an iconic London Paris Ride, I convinced the charity that it could, in fact, be done.
They went for it. And so, in May of this year, no fewer than 45 of my family and friends, including my sons Ross and Joe, joined me and 80 other riders – patients, their relatives and friends, consultants, researchers, pharmaceutical company teams – in a gloriously sunny Greenwich Park to cycle the 300 miles, in four days, to Paris.
The ride came with full professional back-up, including motorcycle escorts for rolling road closures – just as for the pros. Bound together by shared stories of adversity and hope for the patients, the challenge of cycling 80 miles a day and the evening ‘rehydration’ sessions, the riders revelled in a sense of camaraderie that was palpable.
On the Sunday afternoon, as the police closed the roads and escorted us over the cobbles to the Arc de Triomphe and on to the Eiffel Tower, there wasn’t a dry eye to be seen. Least of all either of mine. It was, by common consent, the experience of a lifetime.
Moreover, we had raised over £300,000 for research that will help to keep myeloma patients like me alive – a figure we should exceed next year when the Myeloma UK London Paris Ride becomes an annual event.
Personally, I’ve discovered a passion for fundraising and for cycling, both of which could help save my life, and I have big future plans for both – the Tour de France also involves a lot of mountains! Today I’m just six months short of my initial five-year survival goal and I’ve realised a dream by riding in a peloton right up to the Arc de Triomphe.
Now tell me I’m not a lucky man.
For more information about the myeloma ride, visit: ride.myeloma.org.uk
Check out another one of our cycle pieces like our article with some expert advice from Rapha ambassador Nicole Tur on how to cope with long distance cycling
Follow us on Facebook and Twitter for updates on the latest local news
Read Bob's story in print in the July issue of the Windsor, Ascot and Maidenhead Magazine
