Making Sense Of Cancer

Is it possible to ever make sense of cancer?

Cancer appears to make no sense whatsoever.

Why would the body attack itself and press the self-destruct button? Isn’t this biological suicide?

When our own cells try to destroy us, that makes no sense. Cancer is the greatest act of self-harm there is.

Or is it?

Oncologists and surgeons don’t have the time to explain the ins and outs of cancer as a disease and why you might have developed it.

Consultations are ten minutes or so if you are lucky and even if you are paying someone privately to chat through what cancer is, the biology and the evolution of cancer is far too complex to communicate in a way that makes sense.

I’ve had Stage IV head and neck cancer twice now and as a fit, non-smoking teetotaller, I’ve had plenty of questions I’ve needed answering.

The obvious one is: how the hell did I get this? I was in great health and at the top of my game.

But no one has been able to tell me why my life just came crashing down reducing me to a big heap of emotional wreckage.

One doctor said it was “just bad luck” and another “we’ll never really know”. Others just said, “it is what it is” or something as equally as vague.

This left me high and dry with nowhere to go other than to ‘accept it’ and ‘soldier on’.

And that’s what I’ve done in true stoic fashion with all the old-school British-grittish philosophy I’ve culturally inherited.

But it makes no sense. What’s the whole point of cancer? Is it to kill off the human race? If we could interview it, what would it tells us about its life purpose?

For many years, I’ve always yearned a proper discussion with someone qualified to talk about all things cancer but my oncologist is up to his neck in patients and even if I saw him every day for a month, I’d probably still have more questions that couldn’t be easily explained or even answered. He’s been brilliant by the way and I’m certainly not having a dig at him as he’s always fought my corner.

So, it amounts to DIY and being active in the research of your own disease and being active in the treatment of your own illness. That ends up being on Planet Google.

Doctors have always advised me to steer clear of the web and looking things up for myself but I disagree. I’ve found out plenty and have found it remarkable that we can access medical information so readily.

Yes, there’s a lot of nonsense and noxious stuff damaging the ecosystem of understanding but there are also some golden nuggets and truffles if you dig and sniff around enough.

Over the years, I’ve read lots of academic articles related to head and neck cancer along with plenty of books about cancer. These have given me insights and broadened my understanding but nothing that has opened my mind or answered my most pressing question: why did I get cancer in the first place?

Quite a lot of these articles are also ‘above my pay-grade’ and not being medically trained, I find them challenging to translate into ordinary English.

In more recent years, I’ve devoted more of my reading to immunotherapy because that’s the treatment that’s prolonging my life and keeping me alive. This is fascinating but also incredibly complex and more diverse than I ever thought.

I needed something a bit more user-friendly.

Recently, out of the blue, I received a direct message on the social platform X from @jarlebreivik, Professor of Medicine & Head of the Department of Behavioural Medicine at the University of Oslo.

Jarle offered to send me a copy of his critically acclaimed book about finding the meaning of cancer. I accepted his kind offer of course because it wasn’t a book I was aware of.

The title is the very aptly named ‘Making Sense of Cancer‘ and that obviously ticked a box straight away. I’ve been trying to make sense of it for so long and tied myself up in knots along the way. So, could this help me?

I needed this book about 14 years ago when I was diagnosed with my first Stage IV but the book was only published last year.

Jarle begins by acknowledging that cancer is an arduous condition and that even if you survive it, you can look forward to living with a chronic condition and some debilitating late effects that will reduce the quality of your life. He’s not wrong as I can attest to that.

But he gets to the heart of the problem pretty quickly and tells us that we should be looking at cancer (and its research) in light of evolution.

He makes us aware that despite advances in cancer treatment, the more we fight it, the more cancer we are getting. This feels like inside information that we have not been party to.

You certainly won’t read cancer charities telling you this: “Every cancer researcher knows there will be more and not less cancer in the future.”

More cancer, not less? This feels like we are being kept in the dark or misled by the popular messages we see and hear in the media about winning the war. The narrative we are being fed by fundraising campaigns is one-dimensional.

That might disturb and frighten you but it needs to be understood.

If you are looking for a book that tells you that everything will be fine, we are going to cure cancer and we will all live happily ever after then it’s time to bury your head in the sand.

This book will probably make you feel uncomfortable. It might even upset you and make you angry.

But that’s not a reason to discard it. Making Sense of Cancer will give you the insights you are not getting.

It will certainly challenge you, it will provoke you and turn your thinking inside out. If it doesn’t do that then, as a bare minimum it will shake your thinking like a snow globe and keep shaking it.

That’s a good thing, a very good thing.

What this book does is prod and poke convention and inspire a more nuanced debate and pedagogical message about cancer research and the realities of cancer.

Yes, you probably aren’t going to like reading that because we all want to read that everything will be okay, you will be cured of cancer and you are going to survive another 50 years.

The stark reality is, the better we get at treating cancer, the longer we live and in the end, the more likely we are to actually die of cancer. It’s an uncomfortable truth that cancer treatment itself can actually lead to cancer and better therapy leads to more cancer.

That’s a hard one to take in and accept but it’s true.

Here’s something that will really wind you up. Jarle says,

If we really want to understand the problem, we must recognise that cancer is not evil. It is not a dark force that is out to get us. It is a consequence of natural biological processes, and the solution to the problem lies in understanding the underlying causes.

See, I told you this would make you angry.

As cancer patients, what is there to like about cancer? This is a monster that is attacking us and trying to finish us off. Surely, that’s an enemy we’ve got to square up to and fight fire with fire?

Perhaps.

What Jarle is suggesting is that we step outside of the emotion and look at things from a new and unbiased perspective and see the ‘elephant’ from different angles and the totality in the light of evolution.

Admittedly, that’s a pretty hard thing to do when your day-to-day life is about survival and just making it to the next.

The problem is, we humans think the Sun revolves around us. We like to think we are exceptional and deserve more.

But we aren’t and we don’t.

The most obvious thing to remind ourselves of is that we get cancer actually by living and it mostly comes with age. We are fallible and even with the cavalry of biotechnology, AI and digital twins helping us, we still need something else.

Look, this blog isn’t intended as a chapter by chapter review. It’s a book I’m recommending you read for yourself. It’s something to absorb on your own terms, not my interpretations. It’s in the eye of the beholder.

I approach this book as an incurable cancer patient and my side of the elephant probably looks much different to the part you are looking at.

What it will do is help you think more critically and question what you have ever been told or more likely, what you haven’t been told about cancer.

The most important scientific principle in Jarle’s book is about how our genes evolve in different directions and that is key to understanding our cancer:

Some follow the germline to the next generation, while others branch off to the somatic line that forms the body.

I hate to break it to you but once we have reproduced, it’s the start of the end game. Our genes have programmed our cells and us to die. This is how it is meant to be. I was told my cancer was incurable, the reality is, in terms of where we are in our evolution, we are all incurable.

The thing is, all the cells in our incredible body are slowly evolving toward cancer. The only real way we can cure cancer is become digital beings but who on earth wants that? Well, some mega-rich tech-oligarchs do but for 99.9999% of the population, that will be out of reach because our pockets aren’t deep enough. Cancer might be the best way to die.

I didn’t like reading that and neither will you.

But reading this and the explanation around it (you’ll have to read the book!) made me realise that my own understanding of cancer was nowhere near at anything approaching a developed level.

That’s depressing.

One or my favourite parts of the book was about immunological warfare because of the way Jarle explains immunotherapy – it’s easily the best explanation I’ve ever encountered and one that many doctors would benefit from reading so they can pass on to their patients.

This book has expanded my thinking, it’s deepened it and it still snow globing.

Just one thing though. Jarle says on page 38 that “It is impossible to always be positive and combative” – well, I’m disagreeing with that.

We might not be able to control cancer but we can control our minds and I’ve been positively positive and combatively combative ever since my incurable diagnosis four years ago now. It is possible!

Making sense of cancer is a tall order for even the best academic brains but this book will help you make some sense of it and certainly a whole lot more than what you are currently being told.

Jarle’s book has upgraded my comprehension and I feel like I’m starting to climb the rope to the top of one of the masts of HMS Beagle. I’ve got a long way to go though.

Being human is a complicated business.

Of course, I hope that Jarle is completely wrong about all of this and that we can stop ourselves from self-destructing without turning ourselves into Terminating cyborgs or digital minds transplanted into invincible bodies because we know how that will end.

For me, Jarle’s book is the real story of cancer that no one tells you about or is afraid to.

Every cancer patient would benefit from reading ‘Making Sense of Cancer’ and so would all medical staff involved in our care, especially oncologists, surgeons and specialist nurses. It has enriched my experience and is helping me get to grips with what cancer actually is.