'We're now over 95% of the way through 2018, meaning that we can statistically reject 2017'. 

I received this terrible joke from close friend and maths teacher Azim last week. It brought back memories from far beyond 2017; of mind-numbing hours of statistical hypothesis testing in preparation for our first university exams, death by a thousand paper cuts from turning to the tables at the back of the musty, hard-bound vermillion stats text-book. The year? 2002.

--

Some of you have asked me how the surgery in October went. It's been awesome to enjoy a couple of medically quiet months, to kind of just forget about The ticking time-bomb. In the context of the precious little difference these interventions sometimes make, it was a success. Remember how an ability to walk up and down stairs was a hospital discharge requirement? A few days after leaving the Harley Street Clinic I chuckled smugly on the Thames towpath, jogging happily on my way to pick Ernie up from nursery. A couple of hours before that my single stitch had been removed. A couple of hours later wife Ingrid would not be so impressed when I told her I was 'back in action'.

Physically, I've gone from strength to strength. Academically, I'm close to completing the formal transition from MPhil to PhD status (mostly an administrative distinction. Still, so you don’t get the wrong idea—life hasn’t been all runs and rides!). Medically, my latest scan showed the surgery worked: the golf ball that was my tumour is now more of a ping-pong ball, a mass of laser-charred cells surrounded by a shell of the cancerous ones. Ideally the shell would be gone too, but its limited volume is not a bad (re)start. Also, we don't know what these baddies are doing. They may be growing and consolidating but they may also be shrinking and dissipating. With a post-surgery baseline MRI to compare against, the next scan should offer an indication.

--

'The price of freedom is eternal…' You know how it goes. I'm sure the hypothesis tests in medical textbooks call for vigilance. Indeed, the New Year will begin with a set of retaliatory strikes. 

The link with 2002?

That stats exam was harrowing. It was a long time ago but it feels like I took it yesterday. I had explained the academic theory to many of my closest friends but fared the worst on the paper. Still, years later the theory would prove pivotal in my achievement of a tough investment management qualification, in researching educational inequity and in understanding poker hands! It's like the exam became a part of me.

Not long after October's surgery I celebrated four years of living with and loving to hate The Terminator. 'Just one year to go before I hit (what the doctors call) long-term survivorship', I quip grimly. Seriously, the thought of more medicines; the TMZ, radiotherapy, CCNU, Gamma Knife, craniotomy, clomipramine, and the murky mess of all the other pills hit me with one tiresome blow... I took them a long time ago but it feels like I took them all yesterday.

--

I'll tell you about the new ones when they come (and leave you instead with a photo of me almost half a lifetime ago, in 2001). On Sunday we're off to Sydney. I'm looking forward to a few more quiet weeks ahead.

With love and blessings, best wishes for the rest of your year

... as quiet or as loud as you want it!

Hi guys! Sorry I'm delivering this message a bit late.

After all the anxiety Friday actually went really smoothly. The surgeon was pleased to have removed 'over 95% of the tumour'. The only procedural concerns were linked to late meal deliveries after the surgery.

I'm back home. I had to skip the Royal Parks half marathon this morning but have no dramas to report, especially regarding walking or climbing stairs (one of the critical clinic discharge criteria). I'll have to take it easy for a bit; but as I was telling Ingrid earlier, I feel like I'm already weeks ahead of recovery versus my big surgery last year--not that I intend to make this a periodic thing!

'Gold'? you ask. The neurosurgeon informed us a afterwards that I was the first person to undergo this type of Visualase 'fry-the-tumour' surgery in the UK.

Kudos, Professor Ashkan! Thank you all for the positive vibes. And 'thank god if god exists' (as one of you exclaimed and made me chuckle).

One of the trippier aspects of the time The Terminator and I have spent together is that I don't know if this has basically been my life 'retirement'.  

I've been forced to hedge my bets (well aren't we all, each and every day?). In case not, I'm about halfway through a PhD. I'm still changing nappies—and procrastinating on potty training! I ran a half-marathon earlier this week through the streets of Oxford, reminiscing on our family's time there. In case it has been retirement, I've been watching my fair share of movies; mostly classics with the occasional Hollywood trash thrown in... well, actually the other way round! It's the latter that inspired the title of this post and best explains why I'll be undertaking tumour-scorching surgery in a few hours. 

There is a key difference with my surgery last year: the target is on the frontal right lobe. Last year it was on the left. This raises the stakes. If the surgeon misses the target the outcome will be something akin to a lobotomy: I will come out with frontal lobe 'don’t-give-a-fuck' syndrome. Fortunately, last year the surgeon had to use the medical equivalent of a shot gun—this time he'll have more of a sniper gun. Visualase—the 'laser ablation' technology—was just approved in the UK and has the ability to fry the target with minimal collateral damage.

Still, the doctors we spoke to couldn't agree. Some (ie oncologists) argued the safer option was to continue with (relatively) conservative experimental treatments, leaving (relatively) risky surgery as a back-up.  Others (ie neurosurgeons) disagreed: surgery is the only sure-fire way to kill a stubborn tumour. Also, Visualase only works for certain tumour sizes; the bigger risk would be to miss the window. 

I agree with the neurosurgeons.

My mind sees a glass 90% (the 'success' probability) full. Removing the tumour could buy me time and produce a sort of fresh start. Against a smaller enemy force the immunotherapy, repurposed medicines, herbal supplements would face better odds. Yes, the non-invasive approach is safer in the short-term but it feels like kicking the can down the road. Now is the time for an all-in.

Still, my heart is terrified in a way I don't even understand. Play Pink Floyd's 'Comfortably Numb' and you'll see me bawl (adorably, only Ernie has seen me do so but didn't really register anything was up!). I've had my share of bad beats. It's been a year of bad beats for our family—death and illness dished out in the most inexplicable (unjust?) manner.  So yeah, I know it's not a done deal.

What I do know is that I go into surgery happy, tranquil, peaceful. I wouldn't change a thing. And that's in large part thanks to everyone who's been a part of this crazy journey.

A toast to you.

'The most important thing in life will always be the people in this room. Right here, right now.'

​Salud!

I am a big fan of Texas Hold’em no limits poker. One of my most vivid memories of the game, almost a decade ago, was a hand against Michael Lennon in a dark and skanky Leicester Square casino. I had been waiting hours to get on the table and—BOOM!!—second or third hand I open with a pair of aces (nice. Odds? 1 in 221). The four gambling zombies at the table smelled too much action and folded. It was heads up between Mike and I. Whatever he was holding, I knew I had him.

***

Yesterday I was handed another pair of 'American Airlines'. The neurosurgeon surprised Ingrid and me with an unexpected proposal: 'low' risk removal of the newish tumour that has developed in my right frontal lobe. We previously thought this was the poker equivalent of opening with ‘the WHIP’ (7–2, worst hand in poker!). 

​No, he responded...

In your situation this is as good as it gets. We have this new approach, Visualase, that's worked pretty well in the US for years. It's just been approved here. Robot assistance makes it more precise than traditional surgery. You could be the first to try it in the UK.

Just one catch: there's a risk you come out having lost all interest in anything and everything. 

A wry smile came over my face as he indicated the odds; they reminded me of the rest of that hand against Mike.

***

It was the Monday morning of my bachelor party. Mike and I like to think we were the only remaining 'survivors' but that was clearly the noxious mix of French champagne and American tequila talking.

'All in', I declared. I'd make a tidy sum whether he folded or, even better, called me.

I couldn't hold back a smug smile as he committed his whole stack. We turned our respective cards over. He had king-ten. Or king-jack? It didn't matter, I had him. 

The dealer flopped: king, king...

***

Under different circumstances I might have decided differently. Ten to fifteen per cent pre-flop chance of failure. Yes, great odds but no guarantee.

The rest of the night? A blur as we stumbled out to the loud, grating chime of Mike's sinister cackle.

My beloved grandmother, Leonor, passed away last week. 

Initially, I was a little surprised the news did not sadden me more. It took me a while to understand why: I knew she had died happily, most of her family around her in her last days.

We had both been diagnosed with cancer at around the same time, which had sparked more frequent conversations. She always sounded remarkably serene about life, all while peacefully and wisely looking into the eyes of death. As my father reflected in his eulogy, she 'played' the most sublime and uplifting melodies with the 'strings' of life, much like Paganini had done with those of his violin, right to the very end—even as, one by one, they snapped.

And even with the last one gone, she plays on. I see it all around me, in myself, in my family.

Bye bye, temo
My latest brain scan showed at least one of my own strings about to snap. 

I had seen the images and it was clear the oncologist wouldn't be sharing great news. But I didn't expect to surprise him when I reported feeling great (I refrained from telling him one thing was bumming me out: finishing the Paris Marathon behind my brother!). He explained: I had just undergone six rounds of chemo but The Terminator had raised its game. Firstly, some of my brain fluid had 'flooded' the right side of my cranium. Not a big deal, probably collateral damage from surgery last year. The concern? Continued tumour growth and resistance to my dear old friend, Temozolomide. 

Advance apologies
I also visited my neurosurgeon to discuss surgery. Easy: forget it—all options involve big risks and small benefits. His gut feeling: I have a year or two left with my current, 'normal' (normal? Clearly, he doesn't know me very well!) personality. After that, the good news (for me) is that as my brain deteriorates I'll start to stop caring about living. The bad news (for most of you): you won't! 

That leaves the desperate and the experimental. So far, the latter have proven very difficult to access. There  is good stuff on the horizon (ranging from vaccines to liquid aspirin) but the red tape in this field is frustrating.

Cue the desperate: the first is a repurposed anti-depressant called 'clomipramine'. It needs to be taken in high dosages to have any chance against The Terminator. The challenge? Initially it generates exhaustion akin to the Pan Galactic Gargle Blaster: 'having one's brain smashed out by a slice of lemon wrapped around a large gold brick'. Tomorrow I turn to an old classic, lomustine (aka CCNU). It's similar to the temo. A form of old-school oral chemo which will cause nausea and batter my immune system when it can. 

La lucha
You know how people often talk about the 'fight against cancer'. I myself have probably used it a few times but I think for the first time I'm beginning to feel the full enormity of its meaning and of my grandmother's magnificence. Leonor made war look easy (to us!); but she must have gone through many, many moments of utter exhaustion, ridiculous dismay, infuriating uncertainty.

Curious then that Leonor's nickname, La Lucha, translates to 'the fight' in Spanish. I will keep turning to her for peace when desperation sets in.

Today [I started writing this a week ago] I received the results from my latest brain scan. It was a rather Dickensian outcome. 

For the left hemisphere (abode of the large, original tumour) 'it was the best of times': September's surgery removed most of The Terminator. Things look calm. On the right side, it hasn't been the 'worst of times' but the situation is more anarchic. There has been some growth in the minuscule blips that originated in early 2017. They're both physically bigger and have more aggressive characteristics.

What does that mean? In some ways nothing has changed. The tumour hadn't been disappearing. 'Short-term' (a rather meaningless filler I picked up during my economics studies) it shouldn't meaningfully affect my health. Over the next few months I'll probably suffer more from continued post-surgical recovery and the toxicity of chemotherapy (the latter is hopefully still delivering blows to the tumour cells).

Long-term things get scarier. It reminds me of the scene in Indiana Jones when some spiky walls are closing in on him. In quiet desperation, like Indy, we'll keep throwing what we can at the rogue cells: a healthy diet, supplements, exercise. Unfortunately physical surgery is no longer an option (you only get to use it on one hemisphere). The chemotherapy and Gamma Knife seem to have done what they could. The walls inexorably keep closing in and not much is likely to change over the next few months.

I'll keep popping the pills, exploring alternative treatment options (I'm still on the waiting list for a promising vaccine…… there have also been some new developments in the UK about a treatment that penetrates the brain blood barrier), writing my PhD, changing nappies, 'racing' Park Runs with Ing and Ernie on Saturday mornings. 

And yet I can't help but remember John Maynard Keynes.  In a comment many see as a poke at the absurd obsession of economists with forecasting way way too far into the future: 'in the long run we are all dead'.
​
Time moves on, one breath at a time.

Today marks the end of Chemo II, round 1. Three weeks ago I said ‘hey’ to everyone at hospital (they all had the ‘... Pedro, Paco, Pancho... Pablo?’ look on their faces), picked up the pills, popped them throughout the week, endured the hangover, got on with life.

Tomorrow, I go back in for more.

‘Easy peasy’? (thanks again Dean!)

Not exactly. I think my body continues to respond pretty efficiently to the chemo but this time it faced an additional challenge: ongoing recovery from September’s surgery. October was miserable as my body worked out what the hell was going on.

Has it been working? With so many interventions (ranging from green tea to cytotoxic drugs) I don't think we'll ever know for sure, but my next MRI in mid-December will offer a pretty good indication of how well the current strategy is panning out. 


Whiplash!

Yeah, recovery has taken a little longer than I expected. To to be fair, the side-effects haven't been that bad. Mainly headaches, easily controlled with a bit of ibuprofen and paracetamol. And I haven't been very gentle on my body. Hitting the bike and Metallica on a Sunday with Cesco was a blast but I paid for it the following week.

Lesson learned. I've integrated a bit more patience into my routine and I'm feeling stronger every week. Yesterday Ing and I (and Ernie) all achieved season records for our local 5k run. 

Life goes on, can’t wait to find the next beautiful blunder!

Two weeks ago. I was stretching out my neck muscles, taking some deep breaths to calm myself before surgery. The surgeon had just warned me about a few significant risks that he had forgotten to mention: bruising around the eyes, a stiff jaw-bone from surgery, forehead paralysis. At this stage I felt I was too pot-committed to say “hey, actually can I have 2 minutes to discuss all this with my wife?”

A few hours later. I was too groggy to fully appreciate it, but wow was it beautiful to wake up with all body parts moving in perfect harmony...

Two weeks ago? Yeah, time flies. I didn’t really mean to take this long to post an update, but it is about time. Without wanting to jinx the recovery, here are two early takeaways: the neurosurgeon seems to have done an incredible job. He let me out a couple of nights early, walking on my own. None of the tales of post-surgical Apocalypse materialised. I came out with some pain but it’s steadily on its way down. What remains is deep fatigue juxtaposed with sense of melancholic restlessness. Today I return to the PhD books. Next week I hope to return to training. No choice on the nappies.

Super powers? Some of the staff at the hospital were not very impressed by my antics. My favourite was the anaesthesiologist. She had forgotten she had treated me during my biopsy a couple of years earlier. As soon as she asked me where I was from I responded: "I remember you from my biopsy in December 2014. I know that you know I'm going to fall asleep in the next 10, 9, 8...". Reading? With all these hours to burn I’ve gotten through some great books: Brunel’s ‘Kings of Pain’ (learnt a lot about cycling history!); Asimov's ‘I, Robot’; Borges’s ‘Labyrinths’.

Restrictions? Kind of. A very "British" take-it-easy-and-respond to-how-your-body-feels. We want you to keep moving but we want you to take it really easy. Comb your hair to the left so that it covers all the scars but don’t get them wet.

Doc's self-assessment? Pretty smug. He feels he got out as much out as was safely possible. The tissue is now in Memphis, Tennessee, where it will be converted into a vaccine. The aim? Teach my body to better fight the tumour. In fact, the surgeon has been so impressed by my response to treatment that he wants to have the tumour "reassessed" - potentially to lower the diagnosis. Not that this would change the medical strategy, but as a man of science...

Cured? Extremely unlikely. The excision and vaccine should, in theory, slow the tumour down dramatically. But as I’ve often said: this is as much art as science. A few relatively unchartered questions remain: possible return of chemo? My tumour seems to hate the chemo, ergo... How effective will the vaccine prove? It is definitively not a cure but some people have survived on it for over 10 years. How closely linked were the excised "main" tumour on the left and the smaller remnants that appeared recently on the right? And so on...

It’s a beautiful day. Let’s see what we can do with it!

Monday 11 September
The plan was to have a bit of a lie-in, devour a hearty brunch, hit the Ironman Wales awards ceremony, pick up my Hawaii World Championship qualification ticket, give my body a break from the sport.

I'm not sure if it was bad luck or bad planning but life got in the way. With less than a week of hard training remaining before the race, I was pushing hard to peak strongly. Cue a nasty bug. Game over, at least for this season.

A new plan emerged: brain surgery. As I've said before, physical surgery has long been an option. I'll say it again--I've been feeling as strong as ever (bug aside!) and the doctors don't all agree the preemptive strike is really necessary right now. The reason: 'excision of lesion of tissue of brain' is risky. My neurosurgeon is most concerned about personality and memory loss (but at least he's confident I'll be OK). 

Risky business
Why risk it? In short, for the same reason I decided to bail on the Ironman this time round: I don't just want to finish, I want to race!
 
I've been very fortunate to make it this far on a relatively light medical regime. Alas, the tumour has been acting up a bit in recent months. I want to take it down while I still have the chance. Or as much as possible; extracting 100% is impossible without generating brain damage.

Surgery will also open up a new treatment option: concoction of a promising vaccine (DC-Vax) that will 'train' my body to fight The Terminator. The alternatives? Wait-and-see or (toxic) medicines. 

'If by God they arrive'
Induce sleep, drill the head open, inject a fluorescent dye, cut out a chunk of brain, pray for the best--it's a scary thought. Oddly I'm not feeling terribly frightened. Why? Most obviously, I don't really feel I have a choice. Ingrid and I have a lot of confidence in my neurosurgeon. I've also been blessed with an incredibly loving, supportive team. Maybe it just hasn't hit me yet. My bad-ass-biker-cum-poet Dean puts it best:

'When one is trying to perpetuate forward on a sustained 22% grade one is withdrawn deeply in the moment. The next moment and the ones after that will be confronted as they arrive, if by God they arrive.'

Earlier today after measuring my exceptionally low heart rate, the nurse at a pre-surgery physical asked slightly nervously if I was about to faint or if I just do a lot of sport. 'Yeah, I train a bit’.

I had a wry smile on my face. 'I just didn't realise it was all to prepare for brain surgery', I thought to myself.

Let's go climb this beast!
​