Lessons from a health journey. Chapter 4 (ish!)

August 3, 2017

This post was orignally posted on Facebook 30th April 2017.

It has been a while since I last posted something of my own creation. Of course, the great thing about this social media thing is that you, the reader, can chose not to read someone’s diatribe or unfollow them if you are finding them self-centred, boorish or anything else objectionable. I won’t be offended.

I make some apology that I am still stuck on the Cancer Journeyman theme. Living with the Big C consumes a large part of everyday and yet, aside of the angst and inconvenience it causes, I am lucky enough to have a dose that can be treated as a gift of life. And by sharing my experiences I sincerely hope that these musings add a small something to the lives of others, whether you are a friend, a friend of a friend or a complete stranger.

The more research I do (an activity that has consumed some part of each of the near 500 days since diagnosis; that’s a lot of research) the more convinced that I am that many health conditions of the West are increasing in frequency because, as individuals, we are acting in fundamentally irresponsible ways. To some it might seem nonsensical that chronic illness levels should be rising when health spend and knowledge are forever increasing. It now makes perfect sense to me. If I can nudge each of you to spend one additional minute each day to invest in a better health choice (when you stop to think on it, what could possibly be more important than this?) and resist an aspect of modern day life that has crept up on us over the last 60 years (mostly in the pursuit of trying to beat time or amass more possessions) then perhaps my time writing this is well spent.

Writing is most definitely part of my therapy. They say that everyone should find a creative outlet. Perhaps this is mine. However, so many of you are selfless in asking how I am getting on, so this is both an update and a thanks to the vast number of people (many who ask to remain anonymous) who have given levels of support that have literally been beyond the wildest dreams of my family and me. The joy of humanity is one huge lesson I have been lucky enough to experience as Cancer Journeyman.

1) Update on my health

24/12/15: diagnosis with terminal advanced, aggressive metastasised prostate cancer. Gleason score 9, PSA score 625 (the most common prostate cancer biomarker, where normal is below 4. Oh dear!)

23/7/16: Chemical nuking finished and my PSA is 0.32. Full body scans show that there is no sign of active cancer anywhere in my body. Against the odds. Whoopee.

Since then: PSA has levelled out at 0.7 – up on earlier numbers, but flat and still a great score.

This week: a roller-coaster. I have been emergency ambulanced to hospital (more on this below) and yet I my latest monthly PSA score is down 40% over March numbers. It goes without saying that I am delighted. Further explanations on how I did it follow below. With all the ‘battles’ I have had with my medical team I am sorry to have to conclude that these results are all the proof that I need that the conventional western medical system is bust: NHS and mainstream private alike. It is not possible to explain all here in this post, but I hope that I can at least encourage you to be more questioning whenever you are seeking health opinion. I can’t speak for every health condition of course. However, my status versus a grim prognosis convinces me that the clear majority of chronic disease sufferers can turn things around if they can convince themselves to follow the philosophies that I have been lucky enough to learn about, and do. Furthermore, many of you will be behaving like I used to: treating long term symptoms with questionless consumption of pharmaceutical drugs; eating too much animal protein; living on a stream of instant gratifications by consuming sugar and simple carbohydrate foods & drinks. I worry for ourselves but I worry more about the shockingly awful example we are setting our children. We should be ashamed of ourselves.

2) My future treatment options

To say that this is a subject that makes my temperature rise (metaphorically) is an understatement.

If I listen to my medical team, and do what they say, then I am both dead physically and dead whilst living. They will have killed my hope.

This is why…
a) Every doctor says that my cancer will come back
b) Every doctor says that at some stage my hormone therapy will stop working
c) Every doctor stays that they have a small number of further treatment options (with increasingly unpleasant side effects) after this. Then nothing.

And yet 5% of people in my situation survive longer than 5 years. Why can’t I be one of those 5 people in 100?

If the doctors are so certain about how their course of action will result, why would I follow their advice and wait for it to happen?

Oh, and by the way, their terminology for my treatment future is ‘watch and wait’. Nice one; not for me.

I have researched hard, read 50 books covering gut health, mitochondrial health, Buddhism and faith, mind health, meditation, cancer, nutrition and more. I have poured over hundreds of websites; I have over 250 related newsletters streaming into my inbox each week; I have been to umpteen conferences featuring international speakers; I am active on countless Facebook groups. As a result I have discovered that my future health is best served outside mainstream western medicine. It is a sad fact: the third biggest killer in the western world after heart disease and cancer is…… the use of pharmaceutical drugs.

Every month I am having to manage an increasing burden of side effects from my hormone treatment. The latest additions being 5 kidney stones (the largest being 10mm – ouch – hence the ambulance episode). Last month I developed bursitis in my shoulder. I am wrestling with near zero white blood cells (i.e. a shagged immune system) and ever declining red blood cell count (a requirement to carry oxygen around my body). I am told this status is the lesser of two evils and that the doctors can’t do anything to help. I just have to ‘watch & wait’.

So you can see that I have been working hard over the past 6 months to get to a point where I can be confident about other treatment choices. This week I reached that point and I have cancelled my conventional treatment.

Despite all the promises of gene and immunotherapy breakthroughs, the pharmaceutical establishment is still pursuing dead ends. And I can understand why. It is not really their fault, nor the fault of the NHS. It is just reflective of the world that we live in. As a public body, spending our tax money, we ask the NHS to be accountable and we sue them if they make a mistake. Therefore, they administer treatments only if they are heavily evidenced by randomised human trials, taking many years and costing billions of pounds. Ultimately this hugely expensive system can only be supported by large pharmaceutical companies creating patentable drugs that they can make synthetically. The profit motive is a very compelling one, even if patient outcome is only marginally better than what went before. And if this treatment makes them ill, well there is another drug to administer…

And yet there are so many alternative treatment options outside this. Of course, going the hippy route and consuming Amazonian tree bark is one option. However, my research has unearthed a fascinating alternative approach that I have now taken up.

In brief…

Medical researchers have observed that diabetics record lower instances of cancer. As do people using statins to treat high cholesterol. And users of several other drugs too (eg aspirin). All these drugs have been used on huge numbers of people (a quasi human trial) where the side effects have been found to be tolerable and well documented. It turns out that these drugs have oncology benefits far superior to modern chemotherapies (and with little of the toxic side effects). There is a growing underground movement in taking these ‘off label’ pharmaceuticals. The NHS, private clinics and Big Co will be slow to take these drugs up because there is no money in them (they are all off patent: 4 months of treatment costs £350, versus a chemotherapy course costing £100,000).

I plan to use this treatment though a Harley Street Clinic (Care Oncology Clinic – COC) for 6 months or so, as a stepping stone to becoming pharmaceutical free. Oh, and the COC oncologist commented on my cancer success thus far: ‘exceptional’, he said, ‘and with modest collateral damage too’. Thank you, Dr Mazibuko, for fuelling my hope.

I am continuing to add more bows to my natural treatment plan. The theory that I adhere to is the ‘aggregation of marginal gains’ – it is easier to make 100 x 1% improvements than it is to find one change that makes a 100% improvement.

This concurs entirely with the COC approach. There is increasing acknowledgment that cancer is a sneaky bugger and has very many ways to feed itself. The more ‘pathways’ that can be interfered with at the same time, then the better the chance of keeping the disease under control.

And so to the reason why I have achieved a 40% reduction in my cancer score this month. I have added 48 hours of water fasting to my lifestyle each fortnight. Nothing but water: no tea, no juice. Nada. It does take some iron will from me when going out to supper with friends, and they understand. Fasting helps my body better manage blood glucose levels, a primary fuel for cancer. And this approach is increasingly found to benefit other chronic disease: MS, diabetes, arthritis. The list goes on.

3) Late in the game, I have learnt that life is a journey of climbing mountains.

Happiness is not a destination, so I have discovered. Many of you will be saying ‘welcome to the real world, Nick!’ But I have finally got there.

Happiness is the journey.

As said before, my cancer journey has been a gift. And I have come to realise that my joy over the last months has come with the sense of achievement of scaling seemingly unconquerable mountains that suddenly rear up in front of me. And once I have girded my loins to scale one mountain, I now know there is another one just around the corner.

This month’s mountain is a white cell count that has been dropping ever since treatment started in January 2016. I have been hugely frustrated that my hospital oncologist team have said that there is nothing I can do about this other than…… ‘watch and wait’…. Grrrrr.

All I know is that if they ever decided to whack me with more chemo in the future (which is their preferred option) my body would not cope. Unless I got some horrible stuff called GCSF, or someone else’s blood, pumped into me. No thanks.

Of course, when speaking to my wonderful nutritionist (Sarah Lumley, one of the team at Body Soul Nutrition), she told me that there were umpteen things I can do to repair my white cells. Consuming beta glucans (a constituent of mushrooms) has sorted it for me. I 100% know this has been effective as I have experimented on myself: stop the mushrooms and my cell count went down. Restart them and my cell count goes up. The conventional advice, or lack of it, is almost criminally negligent.

I have four concurrent health mountains (some linked) that I still need to scale:
1) 5 x bloody painful kidney stones. Some people tell me that passing these is worse than child birth. I wouldnt know and this is not to lessen what you wonderful mothers sacrifice in bringing each of us on to the planet.
2) 1 x excruciatingly painful shoulder, caused by muscle degradation
3) A body that has not liked 16 months of testosterone starvation
4) A red cell count that cannot go much further south before I succumb to the oblong mahogany box.

If you have got this far I hope that I have not bored you rigid. I hope that I have given you just a little inspiration to both lead a healthier life (and steer the lives of any children you are lucky enough to have) and to challenge the health system status quo. And if you have a health challenge, I hope I have given you some hope.

Love to you all. Have a great B/H weekend. Nxxx

Please do let me know your thoughts I will get back to you. Thanks.