Wednesday 12 June 2024

Rog T’s cancer blog - Book review, making sense of cancer by Jarle Breivik

I have a complicated relationship with cancer. Like the Holy Trinity, there are three strands. The most significant (Cancer the father), which in many ways defined my personality and made me who I am was being the child of someone living with cancer. My mother was diagnosed with 'terminal stomach cancer' in 1970. She had a total gastrectomy, which in 1970 had a zero survival rate after five years. Her surgeon, Mr Phillip King, advised her that the operation would buy her enough time to 'get her affairs in order'. A tumour the size of an orange was removed. It transpired that even if you survived and the cancer didn't come back, you slowly starved to death. Much to Mr King's surprise, and thanks to eight pints of Guinness a day, as well as sheer bloody mindedness, she survived until 2008 and died of a stroke. Mr King informed her in 1984 that no one on the planet had survived the surgery as long as she had. He did a series of x-rays and tests and found that her stomach had regenerated itself to some extent. She was asked to appear at a conference. One of the lessons they learned was that her huge intake of Guinness suggested that liquid foods were a way forward to get more nutrients in. Mr King told her when he retired that many people were now surviving directly as a result of analysing her recovery. My mother gave me a somewhat unrealistic view of how you survive such things. It also left me with PTSD. As an eight year old, seeing my mother looking like death, with drips in her and seeing my Dad, the hardest man I've ever know break down in tears scarred me, in a way I've only come to terms with recently. 

The second challenge was my own struggle (Cancer the son), with Prostate cancer, diagnosed in 2011, treated with HIFU in 2016 and removed last year has been a shadow. Only since I've been given a good assessment that I am 'cured' following recent PSA tests and the pathology of the prostate, I can really see the impact. I was always asymptomatic and the cancer was always at a stage where I had treatment options that meant it was not life threatening/limiting. Ironically, before I wrote this blog, I read an article in the Daily Express from this morning stating that GP's should bring back widespread Prostate testing using the PSA test. This was what caught my cancer early and I'd probably be dead or at least in a very bad place if I'd not had one. I am lucky, my GP gave me the option. When you start to get symptoms, generally your luck has run out. To me, this is a no brainer. Used in association with non invasive MRI scans, there can be no argument that this wouldn't save lives and give men better options. The cancer did change my life, but in several ways for the better and it made me far more health conscious. It did not devastate me in the way that my mothers illness did when I was eight. 

And then, I'm a blogger and I seek the truth (Cancer the Holy Spirit). I try and read books and research, as people do ask me. I've recommended two books to many people. They are Anti Cancer - a New way of life and The The Emperor of all Maladies. The first is by far the best self help book on the subject. Not new age silliness, no invocations to ignore medical advice, but a lot of practical suggestions for how to deal with cancer and possibly extend your life. It was written by a medical professional living with brain cancer. The second is the history of humans relationship with cancer and the way treatment has developed. It is a heavy going, at times, book but for me it made perfect sense. I've read many others, but these two gave me, a layman, everything I felt I needed to understand. There are others that have been useful but these are two that stand out for me. 

A month ago, I was contacted by Jarle Breivik MD, PhD,Ed D and he offered to send me a book he'd written on the subject. I said I'd read it and let him know what I thought. I never read about the authors before I read their books, if I don't recognise the name. I like to have an open mind on what they have to say. When the book arrived, given the title, I was sort of expecting a fluffy self help guide, to help someone in my position navigate the challenges. I read it on the flight to Italy last week, I find reading makes flights go rather quickly. To say that the book wasn't what I was expecting is a massive understatement. The book is well researched and properly referenced, as you'd expect from a Doctor operating in the area of cancer research. What I wasn't really prepared for was the central proposition that Dr Breivik makes in his book. which is that the rise in cancer rates  is a direct result of advances in medical science. In short, if you live long enough, sooner or later you will get cancer and as things such as war, parastites, car accidents, plagues kill less of us, cancer will kill more of us and we should get used to the idea. Dr Breivik caused a major row in the cancer research community when he called out Presidents Obama's 'moonshot against cancer' as doomed to failure. Many researchers felt that Beivik's comments would damage funding streams. 

He also makes some very thought provoking comments about tech billionaires funding cancer research. His view seems to be that what we are heading towards is a society where billionaires can extend their lives indefinitely, whilst the rest of us languish with a third rate medical system. He talks about replacing cancerous organs with ones bred in genetically modified pigs. None of this is cheap. 

He also postulates that death by cancer may well be the best way, of the big four, to die. With sudden death (accidents/heart attacks) you get no time to plan and say goodbye and it is a terrible shock. With dementia, you are effectively gone long before you are dead and everyone else suffers, with chronic ailments, you slowly fall to bits over decades, with your life getting ever worse. Cancer gives you time to plan and say goodbye, but is relatively quick. 

Towards the end of the book, he talks about AI and the prospect that we could all be digitised and live forever in the cloud.

The book is extremely challenging, especially for someone like me, who's life has been changed twice by cancer. It is clearly written by someone who sees the world through the eyes of a researcher, where the challenges are interesting and theoretical and where myths need exploding. His explanation as to why cancer rates will continue to rise, whatever we do, is something that I hadn't previously appreciated and in some ways needs to be said. Obama's mission to make cancer a thing of the past was doomed to fail as cancer simply evolves as medical science finds ways to beat it. 

Like many cancer researchers Dr Breivik is very interested in genes and very influenced by Richard Dawkins book The Selfish Gene. Like Dawkins work, his view on this is interesting and helps to understand the processes of nature around us. He doesn't make what I consider Dawkins mistake, in using his scientific arguments to launch crusades against people who take perfectly rational views of other areas of life, who disagree with him. I've always found Dawkins to be extremely interesting but highly annoying at the same time. He seems to want to force people to take sides, when we don't really need to. If Mrs Beans down the road is made happy by nipping down to church at St Michaels on a Sunday, why should anyone else care, if she's not harming anyone. It may be completely irrational, but many things that were once judged as irrational are now deemed scientific orthodoxy. If it was scientifically proven that the probablity God existed was 99%, I personally would applaud Dawkins if he remained an atheist and took the view that the the case wasn't 100% proven. Likewise, I'd not expect the Pope to jack it all in if it was proven God didn't exist. A theology professor once told me that "The day science proves God doesn't exist, is the day his existence becomes a certainty". I didn't understand what he was saying at the time, but his point was that once we had certainty, we could indulge our beliefs to our hearts content, without having to have arguments about the unproveable. I'm with Dawkins that killing each other in the name of God is stupid, but I think that if we abolished God, we'd simply find new things to argue about. Being atheists didn't prevent Stalin from murduring Trotsky. But Breiviks point is that Darwins concept that evolution is driven by 'selfish genes' is a sound one if you wish to understand cancer.

So how do I feel about the book? I like being challenged. Who would I recommend it to? This is easy. Anyone who is considering a career in medicine or medical research. It puts many of the questions that I didn't even know I wanted to ask into very clear focus. After I read the book, I realised just how many brilliant people have worked in the field of cancer treatment and research for all their career, and yet we are still where we are with cancer rates rising. For such people it will help in "making sense of cancer".

However, I do have an issue with the book. I wouldn't recommend it to anyone undergoing treatment. It is simply too depressing and I really don't think that it would help them make sense of cancer, as they look at options. Both of the major treatments I had were in some ways 'novel'. The HIFU was part of a medical trial by UCL. My radical prostatectomy with neurosafe is not a NICE recommended procedure and is not available on the NHS. It gives better outcomes, but is expensive and the NHS sees no benefit in men like me maintaing erectile function. The point is that research and science gave me options that simply didn't exist when my Uncles had prostate cancer in the 1970's and 1980's. I didn't have my testicles removed as my Uncle did, to slow the spread. I am all for research and I completely understand the criticisms of Dr Breivik from colleagues concerned that his comments would damage funding. 

To conclude, I wear two hats. I had two careers that ran side by side. I worked in IT for 30 years as a freelance consultant on large commercial computer systems. I understand data and numbercrunching. I understand that you have to be honest about information and you have a duty of care to present it in a way that has integrity. I developed some very complex software, which identified patterns in billions of items in disparate data. Sometimes the data would answer questions that you hadn't even asked, but delivered huge benefits. As such I am not entirely sure anyone can make predictions of the future. I recall when the World Wide Web was launched, we were told that the major benefit would be that scientists would be able to exchange information and the world would be better. I wonder if Tim Berners-Lee would have bothered if he'd realissed it would launch the Anit Vax industry. In short, I am wary of sweeping statements, such as the Moonshot at cancer was doomed to failure. 

Then there is my other hat, as both an artist and a cancer sufferer, I want to have dream and have hope. I am not sure that someone who has been told they have three months to live and that they will be mired in pain and despair would really benefit from being told that of the four main ways to die, cancer may well be the best. 

So, I am glad I read the book. It was interesting and thought provoking, a great read for people who's job is to understand cancer and medical research and challenges. It would also be a good read for people with a general interest in medicine and the way the world works. For someone who is going through treatment, I think it may be very difficult. Unless you have an analytic mind and the bandwidth to process the bigger picture, with all of their other challenges, I don't really think it would help you make sense of anything. 


If you enjoy reading this blog, why not have a listen to my music and give it a like. I've written a number of songs about my struggle against cancer. This is one, Buy me a bottle of Jack, about the darker moments. The False Dots are playing at The Dublin Castle in Camden Town this Sunday from 7.30pm. Come down and say Hi - Tickets available here -

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