Finding progress in cancer’s scars

I’m a massive fan of the big wave surfers. Those remarkable adrenaline junkies who stylishly ride the monster waves until they break. But then so often tumble, flounder and struggle for breath in the endless white water maelstrom that ensues.

My journey has felt every bit like that. The victory celebration should be beating or holding back the big one… the further devastating spread of any cancer - but in reality the collateral damage seems just as brutal and long lasting to deal with.

It often feels like a hollow and temporary victory. Every day I tell myself I’m still here and still winning. For those of a certain age it’s a bit like the famous Monty Python “just a flesh wound” sketch from The Holy Grail. You crack on and convince yourself, and those around you, that it could always be worse.

But in reality the veneer of healthiness can at times be very thin. As someone said to me not long ago… “ you don’t look like what you’ve been through”. And they are probably right. It just goes to prove ; sometimes you really can fake it if you get enough practice.

I’ve always had a genuinely good relationship with my specialist Nick. After all, he was the one I trusted at my most vulnerable, he was the surgeon who agreed to undertake challenging advance stage surgery, he was the one who ultimately saved my life.

So over time we’ve learned to understand and appreciate each others propensity to smile through the dark bits. Although we still jointly manage difficult co-morbidities, and intervene where necessary on rogue cells, his recent verdicts in consultations have become a bit of a standing joke. The latest one followed the trend.

“I’m delighted there’s nothing that seems likely to kill you in the short term…”

In a world of so much uncertainty, that’s as good as I hope for.

Over 6 years on from finishing active treatment, that first diagnosis is still a tough and slightly surreal conversation to relive. When they say you’ve got advanced cancer, sound waves become confused. You actually hear……you might only have a few years left.

Oesophageal is not the one you’d choose. The stats said i had a 13% chance of surviving 5 years. But stats are just stats. All the same it can be hard to contextualise, and often even more difficult to establish why I became the one in 8….

That’s like the sales forecast placeholders we’d put on CRM just to cover ourselves if the miracles ever happened. So I’m offering hope to all of the bad forecasters, and validating the fact that the odd bluebird still comes in.

In spite of the poor prognosis. I always had this best case scenario in my mind - where I’d get through all the chemo cycles and surgery and emerge only somewhat changed. I was young, fit and active. No vices. I was fully prepared for a change in lifestyle. But I was unprepared and unexpecting of such a change to life itself. In truth navigating life in the wake of cancer has been more challenging than I ever imagined it would be. If in work you are only as good as your last deal, In life I had become as good as my last scan. It has been an epic reset.

My self titled “adaptive plan” has been stress tested to the max. I continue to astound and dumbfound the medics with the unwillingness of my body to conform or respond to traditional or radical treatments.

Mechanically my body remains pretty screwed between the neck and waist. The body is generally a clever thing ; it finds ways to deal with multiple missing organs and the trauma from the brutal surgeries. But every body reacts in a different way in judging if these same organs are really necessary. Alas mine has not really played ball, nor followed normal medical convention. The method and scale of the surgical intervention left significant nerve damage alongside the expected reconstructive challenges. So every day we try to find new ways to alleviate both the mechanical and neuropathic issues.

I’ve always openly admitted that knowing what I’ve gone through likely won’t help anyone.. but knowing how I’ve approached it just might. So for those who surprisedly told me they’d been provoked or touched by my musings, this update is part of the ongoing cathartic process. An overdue review of the 5 year plan ; an opportunity to reflect on the fact that the outcome might not have been so positive. And for the person who said they’d not heard from me a while and just feared the worst - a response to all those who wondered if little old JC was still alive and kicking.

I still passionately believe that we simply don’t know what we don’t know - and tomorrow might bring something for which you could be better equipped.

And I’ve talked in my blogs about Accept and Embrace & Progression not Perfection as key mantras in my life within a new plan. A plan which rarely ever has the chance for the ink to dry before being tweaked and massaged.

Accept and Embrace is perhaps the single hardest aspect of adapting to new life. A new life controlled by an unpredictable ??new?? body, with treatment and medication which just throws more volatility into the mix.

I’ve always firmly believed you can choose to be defined by the event, or defined by the response. It was a sentiment so brilliantly embodied by the inspirational characters of Doddie Weir and Rob Burrows. In my own mind I slowly started to appreciate that true acceptance could only come from choosing to be defined by the reaction. It was the only way to cut the old life off. In our house we now somewhat savagely describe these periods as Before Cancer and Post Cancer (BC and PC)

In the early days the longing for how things used to be was strong. But you can’t go back. The impact of food? and the ensuing hypo / hyper glaecemic episodes influences any activity strongly. The side effects of the drugs is more regimented verging on controlling. The knock on is that everyday planning becomes tough. Fluid is the best way to describe things.? When I get things right then all is good… when I get things wrong then a surrealism I never really expected kicks in. And sometimes the frustration comes from not understanding why or how you have got things right… or so wrong.

But, in amongst spells of despair, you can do nothing but chuckle at times.

The tables can get vigorously turned with amusing results. I had never really imagined early morning dog walks, involving my 2 favourite furry friends, looking somewhat bewildered, watching me take an impromptu dump deep in the forest when my meds tell my body to misbehave. You have to laugh, then accept it and embrace the new things that life brings. Adversity and absurdity are still the most brutal teachers. But humour remains such a strong survival instinct; perhaps the strongest of them all.

Likewise I used to consider the side effects from drugs and my induced zombie like state to be a total waste of several hours each day. I now consider it a period for more creative thoughts, or just to conserve energy to do the things I need to do. I’ve become the curator or self appointed AI jester of many WhatsApp groups. It’s actually not a weakness - it’s being smart in fighting it. My general intolerance of food means my body now survives in starvation mode on the minimum of calories. We are 2 stone lighter than at the start - so saving every bit of physical or emotional energy is actually a positive thing.

The most significant elements to accept were two fold … the first was the acceptance that after nearly 30 years, my inability to be predictable meant that I could no longer effectively work alongside the management of my issues. A blow which sent me into medical retirement and massively shortened my working career. But it also highlighted an ongoing compassion and support from the SLT of my employer Logicalis of which I could have only dreamed. And for which I remain eternally grateful. There are many aspects of events, collaboration and the sales buzz I miss, but time without working responsibility affords me the chance to focus on maintaining my best quality of life.

And secondly the fact that socially, all interactions become altered, compromised or curtailed. You never really understand to what extent eating and drinking form such a strong part of our social culture until you can’t do them in the same way. Let’s go out for a few drinks,? let’s go out for a meal for a birthday. But ultimately I am still human. Occasionally I dream of throwing my world upside down and going for the f**k it.. I’ll deal with the consequences. But generally the thought of my favourite things… an amazing pizza… a fantastic Asian meal.. have in my mind become inextricably linked with the effect it will have. Overriding that sensation has become the ultimate rebellion these days.

Episodes can be alarming at times…. Particularly for those who have not been through them with me before. And this is something I have to treat with some care. Continuing to do the things I loved in my BC world presents challenges. It was an active life driven by heavy sports engagement. I still want to do things as before but I largely can’t. I’ve had to accept that, and embrace what I can do.

So I’m often faced by 2 choices … I can do the things I love for the same duration..but slower. Or I can try to do the things I loved in the same intensity…but for a much shorter period. If you start with the basic acceptance of “I’m still here” then actually either of those options is a blessing. So I’m listening to my body every day and making my choices accordingly. Even now, every day truly is a school day.

And how do I know I’m still not 100% there ? Well, as Sharon and the kids frequently remind me, if I catch myself saying my body is sh*t I have to check …and rewind. It’s not. My new-old body has been through the wringer… and the fact that it’s still going is pretty amazing.

In embracing the new I’ve become aware that different opportunities arise. I’ve found dog walks I never knew existed, been cajoled into Pilates poses that defy physics and reconnected with many friends from the deep and distant past.

I’ve discovered single line items on a to-do list that have taken weeks. I have experimented endlessly with new cuisines, even though amusingly I don’t really eat ( as my kids would say….Dad loves cooking.. he just hates eating) and I’ve found AI photo apps that make 1980s pictures sing !

I went through the whole COVID interlude largely wrapped up as a vulnerable individual. We simply didn’t know the potential impact on my underlying respiratory issues - but all was ok. And as it turns out I’m not a bad university essay proofreader, or an alternative chat GPT option when our undergrads needed another human viewpoint.

But for me the important thing mentally has become the actual engagement.

The process of doing frequently becomes the distraction.

Time often becomes an incidental.

Sometimes the what actually becomes irrelevant.

They say retirement can be a challenging transition. Forced retirement necessitates a further level of acceptance that takes some time and patience to assimilate.

I’ve always believed perfection was a moving target and it’s fair to say I no longer seek perfection. I sense certain of you smiling saying I never did… but whatever eh ? ??

It’s all about progression not perfection. I still set goals… and I still frequently miss them. And as I’ve said all along, it doesn’t actually matter. You just reset them and go again. It’s rare that you’ll have made no progress. You just won’t have made as much as you’d hoped for. It doesn’t matter. If the goal you set was perfection… you’ve seen progression. And in a world of so many things I can’t control and influence, that truly is a result that keeps me advancing. That’s my progress in the wake of cancers scars.

Life may have been subject to the great reset. But the rules I set myself at the outset are largely the same rules that keep me going.

My concept of marginal gains still holds firm. A few small things layered on top of one another can still take the unmanageable to bearable… or transform a bearable day to a good one. I’m learning to stack them up and take the cumulative impact. If that ever fails then tomorrow resets the clock. It is simply a brand new day to start again.

My focus on the steps not the staircase still helps me break things down into my bite size chunks. I know that has massive resonance. I’m genuinely happy to know that from the midst of absurdity, sharing the journey and some of what has worked for me has had a positive or reassuring impact on friends or colleagues, either with life, or a tough diagnosis. Things can be hard enough without that feeling of going into the unknown abyss.

My kitbag continues to accumulate ideas, strategies and energy from the travails of others. I steal shamelessly. Quotes, memes, experiences, approaches, legacies. I do honestly like to think I’ve had enough drama for one lifetime, but there is always space to tuck stuff away for the life you might not yet know.

And as I’ve maintained all along. If you are a magpie… you must also leave your nest unguarded for others to find the shiny bits. As several of my friends have found themselves afflicted by cancers, the fact I can share, without any sugar coating, what to expect and what may have worked for me, is a powerful thing. And a reminder that no matter how merciless treatment gets… the body and mind are truly amazing. As my boy hood band favourite Public Enemy would have said…”Harder than you think -? it’s a beautiful thing”

Perhaps the toughest rule… but the most rewarding and mentally valuable remains not worrying about the things you can’t control. Control the controllables . Everything else is noise which disrupts and stresses the flow. I can’t affect it, so I try to discard it. I choose my battles very carefully. A dose of logical thought supplemented with realism and pragmatism.

At the outset I said it was? “Time to close the biggest deal”. It was the only deal on the forecast. A complex sales cycle full of twists and turns. And to be honest it’s still going on. If I was on that forecast call, then “Issues with Implementation” would be an apt status review.

Rest assured that the grim reaper will always loom large on your shoulder IF you choose to look - but there remains a strange pleasure in beating statistics. Numbers… probabilities. The multi million pound deal the deal review panel said you’d never get. Except this win feels much more binary.

For someone who revels in the humour of life, this article might seem slightly short on laughs, so I present as closing evidence the fact that the odd white lie (no matter how genuinely told from places of love )will always catch up with you.

At the time it seemed pretty cool to tell my very young nephew and niece that the surgical thoracotomy scar from navel to middle of the back was from a vicious shark attack. And as the years roll on… their natural curiosity grows, as does the laser focused questioning on the events of that day. At some point I’m sure I’ll have to come clean with the much less exciting reality. For the meantime… to steal from that seminal film…

We’re going to need a bigger imagination.

JC