Just over a year ago Miguelito told me 'this [GBM] thing is like getting in the ring with Mike Tyson', and there ensued a bunch of boxing metaphors before I calmed down a little and started peddling cycling pablums. Still, the pugilist in me was a little disappointed when the bout raged on beyond a poetic twelve (chemo) rounds. 

Today was scheduled to be Chemo Friday #16. I'd 'normally' have loaded up with a few anti-oxidant shots, taken the anti-nausea pill, started the 3-hour pre-chemo fast. In response my body would have started subconsciously quivering and convulsing at the thought of the metronomic intoxication to come. Not this Friday. Ingrid and I decided, with the incredible help of our closest medical adviser, beloved Dr Andrés, that this was a good a moment to rest. 

The good news: the tumour is about as quiet as could be expected at this point and and backing off the temozolomide will give my body a chance to detox and prepare for the title defence. The bad news: the challenger will most likely come at me with a vengeance. When? The scientific money says any time between 8 and 30 months from now. But we're preparing for that eventuality. Our old friend, the temozolomide may well be there alongside other less toxic responses ranging from surgery to pioneering medicines. My brain tumour samples are on their way from storage in Wales to Cambridge, Massachusetts via London for genomic profiling. This should generate new personalised treatment options. 

Yes, It's a bit scary to remove the chemo 'safety net' (I never thought I'd string those three words together), but we're taking a long-term view on this. DON'T PANIC. The bikes have moved over to make room for the pram, the spare room has been transformed into a nursery, I've officially launched my Kona Quest (huh? Watch this space...), Ingrid is wrapping things up at work before her maternity leave, and we're counting down the days to our 'six-month weekend' with Ernie.

As for boxing poetry: our suspend-the-chemo decision comes at the end of 15 rounds, the old-school 'championship distance' of heavyweight titles.

It was a long journey up the mountain, from the airport to the base of the volcano—the taxi negotiating switchback after switchback, steadily gaining altitude. Looking down through the clouds at the gleaming, azure ocean, I couldn't help a nostalgic smile.

35 days earlier
JD and I had recently made this same journey up the mountain together. But that time our smiles had been more nervous (shit-scared?) than anything else. We’d come to Tenerife to cycle. The good news: our hotel felt like a chalet that had somehow landed in the middle of a moon crater. The bad news: the drive took about an hour. If we were to pedal up the entirety of the mountain the days would be long. Of course, we didn't *have* to go for the entirety of it, but that would have felt like cheating. More eloquently put by Don Quixote: ‘just as it is easier for the prodigal to be generous than the miser, it is easier for the reckless man to become truly brave than for the coward.’

Happy 14.6 month thrivorship!
Our legs became a little braver that week, and so did my blood count. But back so soon? Believe it or not it was Ingrid’s idea, the aim being for me to get another red blood cell boost by sleeping at altitude. This should give my body more time to keep absorbing the chemotherapy, which continues to do a pretty good job kicking the tumour’s ass. So add altitude training to the list of ingredients that we’ve added to what the medical profession calls the‘Gold Standard’ treatment. ‘Reckless’, my oncologist would say. And indeed we don't know how much impact it will have. But the same could be said of so many of the alternative treatments that allow me today to celebrate my first 14.6 month thrivorship anniversary 14.6 months? The median life expectancy after diagnosis for people with GBM. Thrivorship (see www.thrivor.com)? Yes, surviving is important, but what's the point of doing so without thriving?

A few days later
There were also plenty of nervous (shit-scared?) smiles—mainly from Ingrid!—as I (recklessly?) changed my first diaper. Yes, it was on a doll. Alas, I still managed to make a mess! Never mind, we’re much braver after our parenting course (thanks for the recommendation Libby) and feel about as ready to thrive as rookie parents can.

Today, 28 November, marks a year since the doctor called Ingrid and me into his office. We had been nervously waiting for ten days for news regarding the biopsy results. There was a lot of small talk; apparently his computer was acting up. We just wanted the news; and Philipp, who was on an out-of-town visit, was waiting for us at the hospital reception. Also, it was Friday night and we wanted to start enjoying the weekend. Eventually he got to it:

He said all this so fast that Ingrid's mind was still processing 'it is not this condition' and she thought he was delivering good news! She soon (maybe after he mentioned death from intracranial pressure just over a year down the line?) understood what he was actually saying and the shock transported her to a 'surreal parallel universe'. My heart desperately sunk. I had just known it would be bad news, but a ticking time bomb... in MY head? Fuck. I didn't know how to tell Philipp, JD, my family, my friends. To Ingrid, I just kept repeating: 'I'm sorry'. To myself I weakly whimpered 'time to get rid of the bike and get ready to die'. 

One anniversary later and the battle against 'The Terminator' continues. The bad news: we've been researching some interesting treatment options for when I finish on the chemotherapy (possibly next month), but I'm not eligible for any of them. The good news: the reason I'm not eligible is because my health seems to be so strong. Oh well, at least those treatments will still be there if and when things get worse. 

In the meantime, 'concretely’ having to stare at death in the face has had a curious effect on my mind: I feel stronger (and more alive!) than ever. To give you an example: last March I told you how I valiantly fought to cycle three laps around the local park. Today I signed up to another cycling odyssey. The aim will be to explore almost 2,000km of Alpine roads, climbing the equivalent of five Mount Everests, over ten days next June (watch this space for my classic fundraising requests!). Then I will, God willing, meet up with Ingrid and Ernesto for a glass of rosé on a balmy, French beach.

'Ernesto?' you ask.

​This is the name Ingrid and I have given to the baby boy we're expecting next February. 

Peering back through the foggy windowpane of last November, attempting climbs to the summits of the Alps and of fatherhood sounds crazy. I didn't really intend for life or this composition to set me up for such a cheesy line, but now that we're here:

'I've now realised for the first time in my life the vital importance of ...'

I like to think Australia's and my respective histories share a common foundational ingredient: aguardiente, loCombia's favourite drink. 

Into the Outback

Australia famously started modern life as a prison. Less famous is the fire water that fuelled its first parties:

It was the first bush party in Australia, with some "swearing, others quarrelling, others singing—not in the least regarding the tempest, tho' so violent that the thunder shook the ship exceeding anything I ever before had a conception of" … and as the couples rutted between the rocks, guts burning from the harsh aguardiente, their clothes slimy with red clay, the … history of colonial Australia may fairly be said to have begun. 
[From The Fatal Shore. The aguardiente at this party was picked up in Rio de Janeiro by the First Fleet]

A country founded on aguardiente, how wild! JD and I couldn't believe it, but even us connoisseurs were not ready for the fiery divebombs that would (literally) come down on us daily during our visit to this land of swooping magpies, parching sun, sideways hail, rugby-tackling nieces/nephews (on the 'soccer' pitch), and mercenary airline staff (Singapore Airlines wanted $3,630 for a bag of excess luggage! Fortunately there was a much more reasonable post office next door). But the rewards on our Melbourne-Sydney road trip were also epic: rugged mountains, lush wildlife, vast azure skies, sweeping scrubby plains, brooding spring waves, luscious banana bread, and of course the warmest family hugs.

Both beautiful and terrifying at the same time, so much so that each quality is interdependent on the other. Perhaps the best way to describe it is as beauterriful. Now JD and I head home to the UK. Glancing up at the flight status screen, I see we're entering the Outback. We didn't spend any time there on this OZ visit, but I do feel I'm writing this while metaphorically riding (sorry, I don't walk!) into this most beauterriful of places. 

​NEETly happy

I started modern life by getting a little drunk as a beauterriful toddler of age two or three. The details are sketchy in my mind, but I probably took a little sip from the drinks (probably aguardiente) of each of my parents' guests at a party. Three decades later and I find myself NEET (not in education, employment or training) for the first time since then. My future plans remain fuzzy, but they will surely include a recipe containing a bike, copious writing, Wales, a pinch of entrepreneurship, a mix of ideas from my Masters' education research, even more time with friends and family, and Hawaii. 

My medical situation is similar. I feel stronger (and happier!) than ever. No, not the strongest (and happiest!) this year. Really: ever. Treatment continues as planned, with just a couple more rounds of chemotherapy in the calendar. The monthly hangovers suck, but they're nothing compared to an aguardiente one. Of course, the tumour could start to regrow, any time any place. It's a good thing, then, that I can tap into other promising but unproven beauterriful treatments if and when they’re needed.

It really is beauterriful peering into the Outback of my life, with no path to follow. In Colombia we religiously pour out a few aguardiente drops in homage to the dead when opening a new bottle. Thanks be to God and my nutritionist: the drink is on my strictly prohibited list!

This question has always bemused me. For all of us, 'I'm fine' is always a bit of a half-truth. And in my case, as friends Christine and Silke themselves pointed out over coffee in Haßfurt last week: 'I'm fine' needs to be seen to be believed—I hope they're now believers! Closer to my truth would start something like this:

'… I'm aggressive going into Round 9 but nauseous just from the thought of that damned poison. I'm confident with the news that my immune system and liver are strong but nervous about what happens if they bonk. I'm grateful for all the alternative medical treatments I have access to, but terrified of the day when I'll surely need them. I'm proud that I won a big block of cheese (and more importantly earned the title Das Gämse from fellow training geek Scott) for finishing on the podium of an Alpine trail race but was too nervous to claim it lest it fry my brain...'

How am I? I would not want to put you through the never-ending, convoluted monodrama.

But if you happen to have a few hours...

Happily, last Sunday I found perhaps my most compelling answer yet, and it's no surprise that it came in the 'multi-media' of an opera—Tristan und Isolde. To fully fathom it, I recommend immersing yourself in the verdure of Wagner's hills and visiting his annual festival at Bayreuth, although it can often take years to get hold of a ticket (admittedly, Ingrid and I forgot to send in our postal applications every year. Luckily, with the advent of the internet, we clicked for a few hours and got lucky). Failing that, YouTubing it will give you a taste.

Like so much art, Tristan und Isolde has bits that inspire fear, excitement, exuberance, even laughter. What struck me about it is how the needle of thanatophobia weaves these emotions together simultaneously with an air of eerie uncertainty. Funny that, given how certain death is. Wagner felt a 'perfect' rendition of the opera might drive people mad. I guess the beauty of truly realising that you are indeed going to die is that life's harmonic suspensions, free polyphonies, and delicate colours become all the more maddeningly 'perfect'. 

How am I? As Natalie would cheerfully say, Pablo has become a 'hot mess'.

But if you have a few minutes…

Many commentators say Wagner gave birth to 'modern' music with all its maddening characteristics. Fast forward 150 years for evidence of it in this grand orchestral performance I'm sure even he would have been proud of:

The conversation turned to the Gini coefficient of a feudal society. Azim argued in favour of a perfectly unequal, and intellectually beautiful, 1. Francesco’s stance: in practice, 1 just couldn’t hold—the reality was much messier and closer to 0. Keen to keep cruising through the verdant hills of Normandie, Nina and I just rolled our eyes.

Today is Day 3 of (post-radiotherapy) Round 6 of chemotherapy, the final round under National Institute for Health and Care Excellence (NICE name, guys) guidelines. A scan in a couple of weeks will give us the latest bout score.

But in the spirit of Francesco, the messy truth is this beast will keep throwing punches. I’m bracing myself for the ‘poetic beauty’ (as JD would put it) of a possible pugilistic 12 rounds. In the spirit of Azim, I’m running rates of return analyses on my counterpunch options. A warning: Azim is a good economist. His arguments are often mathematically elegant, attractively simple, and overladen with assumptions. His conclusions are, on the whole, useless. ‘I’d rather not be bored than happy’ comes to mind. Yet invariably and almost inexplicably he keeps serving up ‘overall survival’ (OS) boosting nuggets of wisdom. Here’s a sample of my calculations:

So what are the nuggets of wisdom?

Firstly, the caveats. I can’t emphasise enough how approximate these figures are. There are all kinds of pinches of salt: statistical curves, limited sample sizes, contradictory studies, non-financial benefits and costs. Different tumours respond to different treatments in different ways at different points in time. This is one of the primary reasons finding a silver bullet against GBM has proven so elusive. Having said all that…

Demand inelasticity (ie when prices goes up, buying habits stay about the same) for life can get pretty insane. Ingrid and I squirm at the ~$30,000 price tag of each year of my life saved by valganciclovir, a repurposed antiviral also crucial for fighting chronic fatigue, herpes and HIV/AIDS. On the other end of the price scale, the million dollar question: would you place a ~$300,000, one-year bet on a contraption that requires you to wear an ‘electric hat’ 18 hours per day connected to a 3 kg battery carried around in a back pack… extending your forecast OS by 3 months? Some people do, and I guess the reason is because life is, to quote Mastercard, ‘Priceless’ (how compelling would a GBM-rendition of that ad be?).

I think another reason we pay so dearly is hope: hope that we’ll end up on the long side of the statistical curve, and hope that the treatment is just a stepping stone to a more effective treatment. The poker player in me tells me ‘the only way out is all in’. Buy as many lottery tickets as possible and pray one of them pays big. The socialist in me warns me this is irresponsible: how much should this tumour cost my family and our world? The price of a year of life for a GBMer purchased via 5 years of valganciclovir is about the same as the price of a year of life for a non-GBMer purchased via a low-cholesterol diet for the next 50 years (~$30,000); neither the most economically efficient of interventions. I can see why NICE guidelines limit chemotherapy care to 6 cycles. After that, it’s diminishing returns but steady costs. And so I dread living out Monty Python’s classic ‘he won’t be long’ scene (https://www.youtube.com/watch?v=Sh8mNjeuyV4). But if Azim and Francesco (lovingly, no doubt) club me over the head and throw me in the death collector’s cart I’ll understand.

Fortunately, there are a few cheaper options. In the same way governments have bought each of us on average an extra year of life at a price of ~$120 by passing laws to make seat-belt use mandatory, I could jump on a plane to India and buy some generic valganciclovir. If I make it long enough, the NHS and Metlife Insurance will one day cover treatments like dendritic cell vaccines. Inexpensive mushrooms have been used for thousands of years in Asia to combat cancer. Eating healthy has, in a way, made me stronger than ever. And then there’s the bike. No, Ingrid, I’m not angling for a higher cycling budget; just pointing out that a bit of exercise has been proven to go a long way in killing tumours. It makes sense. As the muscles consume glycogen, the cancerous cells struggle to tap into the sugar they crave. And as the sweat pours out, so do many of the medicinal toxins.

And then there’s the most powerful cure of all. Thanks be to God, Ingrid, Godson (happy birthday Little Knight!), my family and friends that made this ride possible. To paraphrase Nina as I sipped a bottle of beer (baby-sized, but don’t tell my nutritionist!) after a long day on the saddle: ‘with November's news, I didn't think we'd be riding together again—let alone from London to Paris, return’. Amen. 

Just as mass is too short to get through all the stuff I’m thankful for, there are just too many ingredients to list out in words here. Still, I think a gift I recently received sums these up well. The gift is a painting by Armelle. She didn’t give me a name for it, so here I am christening this patchwork of everything that feeds life with life: 

The (Radical) Green Machine

A few months ago I complained human activity (eg bed-making) accelerates the universe’s journey towards its extinction by generating entropy that moves us closer to thermodynamic equilibrium. I was relieved to learn from Azim and Francesco during our baguette stop that life actually reduces the entropy intrinsic to the mess of the world they’ve helped me waddle through. Radical! Yes Keynes, 'in the long run we are all dead', but in the short term we can all be radical green.

'It's been a while' was the message received earlier today from both Rapha Cycling and Ollie.

Rapha Cycling reminded me I need to intensify my focus. The same way it's easy to get lazy about the 'easier' (but duller?) side of cycling (eg stretching, resting, bike degreasing) when your leg power is shooting through the roof, it's easy to get lazy in the GBM battle when things are going well. This week's milestone is perhaps the biggest so far: I haven't felt a headache in a few days. To be clear: I've been great over the past few months, but there's always been that lingering phantom of infrequent but daily pains to remind me I'm in the middle of a war of attrition here. That phantom may be gone, at least for now. The joy: a sense of 'normality'. The risk: missing a veggie juice here, adding a bit of butter there, forgetting to tick the boxes in the supplement tracker; effectively laying down arms. Yes, helping poor countries boost the quality of their teacher training through my dissertation is important. But as I was reminded deep into an agonising turbo trainer session last week, even as painful and scary as life gets for all of us, here's some BREAKING NEWS:

I feel ‘good’. My only major affliction is having to take some pills from time to time; no worse than a few aguardiente shots. I walk around, and blog about looking cool. A bit on the exuberant side for my brother’s and Azim's respective tastes, but still cool.

My dreams, however, reveal terror: the other night, after a long chat with an expert on innovative treatment options, I dreamt I was lost and alone in the maze of a hospital with the fancy triple-barrelled name, the slick architecture, the frosty staff of a Wall Street bank. I peered into room upon room packed with rows upon rows of patients hooked up to beeping, flashing machines. All waiting to die. I shot up with acute, piercing anxiety and suddenly it hit me that while my pedalling power is approaching its best ever, my tumour could blow any time. Glioblastoma multiforme—it’s complicated.

A few weeks ago I went to see The Audience, a play about the Queen’s regular meeting with the Prime Minister. We couldn’t use our original tickets because of a tumour related clash. Alas, our beloved nephew Benny was diagnosed with leukaemia and in a dark comic twist straight out of a Greek tragedy, my wife and I laughed and cried during every Audience from Churchill to Cameron on the day Cameron was declared winner… with Benny’s parents’ tickets. Leukaemia—it’s complicated.

The richest 10% own about half of UK wealth. The poorest 50%? 10%. And don't get me started on education in poorer countries, the topic of my dissertation (which I've actually made some progress on recently!). What can the Conservatives do? Inequality—it’s complicated.

My legs bonked last week. My brother and I blitzed it down to Brighton in a couple of hours. My overoptimism was punished by a sublime sufferfest as I stubbornly wrestled the pedals round and round for the last few hours. Pacing—it’s complicated.

Yes, it’s all a bit complicated. But maybe not as much as we sometimes think. Maybe the (fictional) Queen is right when she says:

In the audience you’re [ie the Queen] allowing complicated people, over-complicated people [ie Prime Ministers], to measure themselves against something unchanging, permanent, simple. Your ordinariness as a human being will be your greatest asset.

... I breathed a deep sigh of relief when I realised I had my wife lying next to me.
... Benny is a tough and joyful kid and has the most amazing team around him.
... A Partner at Ingrid’s firm gave his forecast tax savings of a Labour loss to charity. 
... JD paced me to the finish. Bonus: we raised money for the Royal Marsden Cancer Charity in a race we signed up to without realising it was in aid of a hospital where both Benny and I have been treated. 

Life can be complicated. But there is something unchanging, permanent, simple going on. Maybe it's collectivism, generosity, maybe it's love. The universe is still a messy place, but I’m pretty sure these last few days we helped it inch closer to some kind of harmony. 

Thanks be to our ‘ordinariness’ as human beings. 

Last week’s milestone: I attempted to ascend Alto de Letras, a cult climb amongst Colombian cyclists. It reminded me a bit of my tumour battle. The Alto is long. At ~80km, no wonder some Colombian pros complain European challenges like Alpe d’Huez (~13km) are just too short for them (not my brother and I; the Alpe almost 'killed' us last year!). The Alto is deceptive. Its average gradient is a gentle 4%. The problem: the short descents offer fleeting respite but imply the actual climbing takes place at a more gruelling 8%. The Alto is volatile and unpredictable. You start close to sea level in the sizzling tropics, weave through cool clouds, and mash your pedals to a chilly, windy, oxygen-deprived 3,692m summit—turbulence akin to the wounds inflicted by the war between tumour and immune system and the collateral damage caused by treatments. The Alto demands stubborn focus. It zig-zags dozens (hundreds?) of times on a tight road shared with mules and tractomulas. The kind of focus that my nutritionist demands although I’m not sure Letras falls under the category of ‘gentle exercise’. I woke up a little uncertain as to how the day would go.

As with the tumour battle, I made the climb look ugly (I experienced a few headaches during all the travel, but I’m still feeling great. I’m due a scan later in May and will let you know how it goes) but—and I pray the same goes for the tumour—I conquered it. It was a team effort in which everyone reading this played a role, but I want to thank and wish a happy birthday to one man in particular, who, even if you haven’t heard his name, you know better than you know: Julián Papá. We ‘lost’ him a few years ago but he’s still here with us and in us. It’s in part his wisdom when my brother repeats the old cycling adage: 'ride up grades, not upgrades'. His strength was passed on by the team domestique (again, my brother) and generosity by the team soigneurs (my parents and wife). The alegría with which I watched the final stage of the 1987 ('85? '86?) Tour de France with him early in the morning in Chía (actually I wanted to catch Airwolf) lifted me meter after meter.

Why do you know him better than you know? Again, a bit of Taleb:

If you know a set of basic parameters concerning [a billiard] ball at rest, can compute the resistance of the table (quite elementary), and can gauge the strength of the impact, then it is rather easy to predict what would happen at the first hit. 

... But to compute the fifty-sixth impact, every single elementary particle in the universe needs to be present in your assumptions! An electron at the edge of the universe, separated from us by 10 billion light-years, must figure in the calculations, since it exerts a meaningful effect on the outcome.

Over time we will all die and be forgotten. But we won’t really be forgotten: whether we like it or not, we will always have been here and will have exerted ‘a meaningful effect on the outcome’ of humanity, earth, the entire universe. Until the year 3,000… and beyond! And this is just on a simple, physical basis—never mind the social and spiritual. Maybe you didn’t know you know Julián. But by you knowing me, you know him pretty well, and I’m pretty sure for the best. 

… Que los cumpla feliz,
que los vuelva a cumplir,
que los cumpla bastante,
Hasta el año 3,000!

Sorry.

I haven't been feeling supercharged about finishing my dissertation. I’m making my veggie smoothies later and later in the day. Writing the blog posts later and later in the week. Wake-up times have slipped as well—1130 (am!) today. Sighs per hour—God knows, but on the rise. ‘What’s happening? Medication rebalancing? Post-temozolomide blues? The unbearable lightness of being? How does your brain feel? Still at 100%?’, my sister-in-law asked me earlier today. Yes, life has taken its hits, but all I could answer was:

 ‘Sorry. Brain impairment and pain is currently asymptotic to 0%. Laziness, to 100%.’

I’m not sure, but it’s all brought back memories of my brother and I haranguing our parents with questions about the purpose of chores like making the bed. If it’s going to be slept in again within a few hours; if bed-making costs the average human being about a work-month of their lives; if bed-making activity potentially accelerates the universe’s journey towards its extinction in the form of thermodynamic equilibrium; if in the long run we’re all dead, whether we have a few seconds or a few decades left, why make it? Questions, I guess, ultimately about the meaning of life…

Don’t worry, I’m not going to grab that ellipsis to embark upon a deep meditation. I’ll just say: there’s not a cloud in the sky here in London and it feels like summer. It’s April and it’s literally too hot to sit outside. According to the papers, we should brace ourselves for THREE more months of ‘hotter temperatures than Madrid, Rome and even Hawaii’. The kind of weather that at least in this kingdom reminds us not quite of why we’re here but that we should just be happy to be here:

I am sometimes taken aback by how people can have a miserable day or get angry because they feel cheated by a bad meal, cold coffee, a social rebuff, or a rude reception, [or a lousy brain tumour?]. … We are quick to forget that just being alive is an extraordinary piece of good luck, a remote event, a chance occurrence of monstrous proportions.

Imagine a speck of dust next to a planet a billion times the size of the earth. The speck of dust represents the odds in favor of your being born; the huge planet would be the odds against it. So stop sweating the small stuff. Don't be like the ingrate who got a castle as a present and worried about the mildew in the bathroom. Stop looking the gift horse in the mouth—remember that you are a Black Swan. (Taleb)

If that's too cheesy, dramatic, academic, or just long—here’s one from a friend that made me smile:

Hamlet is the greatest piece of literature. Like Bryan Adams, it gets better with age.

(I'm not sure if she's referring to the audience's or characters' respective ages, but no matter) If you’re procrastinating like Hamlet or chasing the summer of ‘69 like Adams, enjoy it or don’t enjoy it; but do remember how improbable a sunny day in London is (or comparing Hamlet to Bryan Adams, for that matter). On that note, I may slow my proliferous rate of writing—please take it as a sign that no news really is good news. It's time to go write a dissertation, extract some smoothies, wake up earlier, and sigh in wonder at the unbearable lightness of being. And to my dear parents, whom I'll be visiting next week: sorry. I’m still not seeing the point of making the bed.