Living with(out) cancer #2

It seems to have taken me six years to learn how to deal with news I received six years ago.

The course of my life changed again after the hospital appointment in August. Once more I found myself scrutinising the thin line dividing denial from not giving the disease any solidity.

As I mentioned at the end of this post, I am now doubting the wisdom of my decision to exclude both medication from my body and medical knowledge from my mind. In the midst of thinking this through I got a letter inviting me for another appointment, this time with my regular oncologist. I approached this with a degree of trepidation, but felt I would be able to face whatever had to be faced. This much I have learned now from my mountain adventures. My wife agreed to come with me too for support.

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Six years ago, a similar series of conversations took place in Utrecht with a number of urologists, during which I learned the facts of my disease and how it was to be treated. Locally advanced prostate cancer. PSA initially 94, rising within a month to 139. Gleason Score 9. Malignant. Aggressive. Incurable but nevertheless suppressible – for a time. When my ex-wife asked for a prognosis, the answer was unambiguous: three years with medication, only one without. This last piece of information was delivered by a certain Dr Hoekstra with a degree of snide glee. He was clearly threatened by my initial refusal immediately to accept the medication he offered, and seems to have been unable to treat me with any kind of respect. All I wanted was to wait for the results of all tests before committing myself to medication and to focus in the meantime on changing my lifestyle and overturning my many bad habits. I was very angry about his manner for a long time (this was not the only incident that inclined me to doubt his integrity) but the process of dealing with the anger is well underway: in particular by writing about it in Dutch; and in general with these continuing meditations on my encounters with the medical establishment.

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So here I am again – although now I meet with a very much more sympathetic and professional team of oncologists. Some of whom have displayed signs of being threatened by my unusual attitude to disease, but none has ever behaved with the disdain I encountered in Utrecht, nor the contempt shown by the aforementioned Dr Hoekstra. Nevertheless, both sets of doctors work according to protocols.

At the time of the diagnosis, the protocol said the disease was too advanced for either surgery or radiotherapy. There was an enlarged lymph node near my aorta suggesting metastasis, both Gleason and PSA values were very high and the PSA doubling time was scary. Under these circumstances, the protocol prescribed injection of a medication marketed under the name Decapeptyl, which according to Wikipedia causes stimulation of the pituitary, thus decreasing secretion of luteinizing hormone (LH) and follicle-stimulating hormone (FSH). It is a decapeptide and a gonadotropin-releasing hormone agonist (GnRH agonist) used as the acetate or pamoate salts, which apart from its use in treating prostate cancer, can be used as part of hormone replacement therapy and by transgender people to suppress testosterone. It is also used as a chemical castration agent to curtail sexual urges in sex offenders.

I knew all this very quickly. Because I have access to the internet. I also downloaded a PDF of the European Prostate Cancer Protocol where I too could see the procedures being employed by the urologists. I also read about the side effects of GnRH agonists, the most prominent of which are hot flushes, depression and complete destruction of libido. Of course, a great deal of my reaction then was founded on blind denial. But also, I did not want to subject myself to any of the above without absolute confirmation that my palpable feelings of being unwell were what the urologists claimed, and that this medication was the only way of doing anything about it.

After much soul searching and a final encounter with the aforementioned contemptuous urologist, I walked away from the hospital in Utrecht and kept myself alive for another winter working as as a cycle messenger and mechanic by eating only fresh, largely organic foods, excluding everything processed, coffee, alcohol, dairy, meat, and sugar. At the start of spring the next year, I had my PSA measured again. It had risen only very slightly from 139 to 142 in the space of five months, which still is quite remarkable. I was nevertheless tired, my weight was down to only 55 kg and I could see the disease looking back at me in the mirror, feel its gurglings inside.

So I returned to the hospital to speak to one of the more sympathetic in the team, who agreed to prescribe a heavy dose of Bicalutamide, described by Wikipedia as an antiandrogen medication that is primarily used to treat prostate cancerIt is typically used together with a gonadotropin-releasing hormone (GnRH) analogue or surgical removal of the testicles to treat advanced prostate cancer. Bicalutamide may also be used to treat excessive hair growth in women, as a component of feminizing hormone therapy for transgender womento treat early puberty in boys, and to prevent overly long-lasting erections in men. The immediate effect of the reduction in testosterone sloshing round my body was a feeling a great calm and a drop in PSA to only 24. I could also taste the chemicals in the medication as they were metabolised and flushed out, smell their odour in my piss and sweat. The common side effects of this medication did not escape me either; breast enlargementbreast tendernesshot flushesfeminisation and what is euphemistically described as sexual dysfunction. It was nevertheless most educational sharing stories with my women friends about the dangers of door frames and open cupboards. For during the time I was taking this medication, I had a substantial pair of moobs. 

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Upon my return to Scotland I was introduced to a slightly different protocol, which again I regarded as a set of guidelines rather than a rulebook. Initial scans, as well as reexamination of scans I had brought with me from Utrecht persuaded the oncologists in Edinburgh that radiotherapy was still possible. Perhaps there was microscopic metastasis, they said, but there were no signs of any lumps or tumours outside the organ itself. Also, after only a few months, the PSA began to rise again, despite the antiandrogens, and so I relented and took the hormone suppressing injection, and a few months later underwent a course of heavy radiotherapy. The former transformed me into a menopausal woman and the latter fried my prostate to mush. After that I was on a schedule of six months on, six months off the injection, until the PSA started rising again despite the medication, indicating that the cancer was now almost certainly metastatic and mutating to develop its own sources of testosterone.

This was when I decided again to go my own way, with good diet, assorted supplements and superfoods, mindful living and sheer bloodymindedness. After more than eighteen months of this, and eighty or so Munro summits later, I must admit to sometimes feeling as unwell as I did six years ago, although now I have developed a whole battery of mental and physical self-medication strategies to deal with this. My visit in August to the hospital brought me back to reality though, to the facts of the disease as they are understood by medical science and to the determinism of the protocols set up to manage it.

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The facts of the disease are clear. I continue to choose not to know any of the numbers because they freak me out, but my wife does know and is doing a very good job of not freaking out about them. The PSA is rising now in a way that is making the doctors a bit twitchy. Both my GP and my oncologist respect my decision to remain ignorant, and even to refuse treatment, but they feel duty bound to tell about me about the medication they can offer.

According the protocol, I should now be prescribed both the Bicalutamide and the Decapeptyl, along with a drug that has recently been made available to hospitals called Enzalutamide, which Wikipedia describes as a nonsteroidal antiandrogen (NSAA) medication used in the treatment of prostate cancer. It is indicated for use in conjunction with castration in the treatment of metastaticcastration resistant prostate cancer (mCRPC) and non metastatic castration-resistant prostate cancer, the side effects of which, when added to castration, include astheniaback paindiarrheaarthralgia, and hot flushesRarely, it can cause seizures, and it has a high potential for drug interactions

After this stops working – which according to the protocol it will – there are still chemotherapy drugs available, but according to my oncologist, in the meantime it is important to get the PSA down, and perhaps after that, continue as before with an intermittent medication schedule. There is absolutely no possibility that NHS Scotland will be able to offer me anything alternative; my position in relation to the protocol is quite clear, under these circumstances, this is what is available, there is no evidence to suggest that anything else works and no justification for making any special case. Which is exactly the same message I got from the conversation I had with his colleague; the only difference it seems to me is that he is more able than his colleague to deal with my peculiar attitude without judgement, and seems genuinely regretful that he can do no more than this.

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The situation has not changed a bit in six years. I still have a disease for which there is no cure. The only ways of treating it within the institutions these societies have established to treat disease still involve only pharmaceuticals. There is still absolutely no space for anything else. And still my agency, my power and mental discipline, my love of life, seem to be doing more to keep me alive than any pharmaceuticals.

But of course everything has changed. Apart from not expecting to be alive at all, I experience my life very differently. Six years ago, after hearing such a bleak prognosis, I shut myself away for months in order to write out the philosophy that had been festering inside my head for so many years because I was buggered if I was going to go to the grave without leaving behind something properly written down, and after a while emerged with a plan to return to Scotland, my home, to be with my best friend and the love of my life, who has since become my wife. For if I was destined to die at such a young age, let it then be where I would prefer to lie forever. Now, having heard more or less the same as I heard six years ago, but without the bullshit, that statistically speaking, unless I take the medication, my life will be shorter than it would be otherwise, I am not overwhelmed by terror nor consumed by panic, nor am I resigned to accept the destiny of forces beyond my control.

I see things very much more clearly now.

I am alive and I will continue to be so until I die, as will we all.

Sometimes I surprise even myself with the words I write.

Love and peace.

Thank you for reading.

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Author: duncanspence

Mountaineer, retired bicycle messenger, philosopher, wordsmith.

3 thoughts on “Living with(out) cancer #2”

  1. Thank you again for a powerful and thought-provoking article, with beautiful photos. Among the questions it raises for me is that of the trade-off between length and quality of one’s life, especially given the list of very unpleasant “side”-effects (a term that always makes it sound like they are something you shouldn’t make a fuss about really) and associated radical surgery that is not even expected to work for very long. There is also the factor of whether to maintain or give up your personal autonomy, something there is still, I think, an expectation that you simply hand over to the experts without question, even if it means that you are likely to suffer more unpleasantly and possibly for longer in the treatment. It’s good that you have found at least one specialist who is taking a more professional approach with you and respecting your choice, to what extent do you think this is culturally influenced, if at all? Thank you again, The closing lines are well-chosen. Best wishes Chris

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    1. I think the differences are less cultural than economic or political, historical in fact. They are between a provincial hospital staffed by jobbing urologists and funded by complex insurance tendering, and a well established collaboration between a world leading university and a government committed to public health. I think the only element that might be cultural is my experience of the reactions of the Utrecht urologists as disdain. I suspect it was quite literally inconceivable to them that a person would choose not to follow the recommendation of doctors; their reactions were degrees of surprise – although I cannot see Dr Hoekstra’s more patronising moments as anything but contemptuous. Whatever … I think the Dutch have a different kind of faith in science from the Scots’; we are more inclined perhaps to include our own experience of things within the data upon which we form general ideas, the Dutch are perhaps more inclined to look to the findings of what they believe to be a reliable and trustworthy collective endeavour for their general perspective on things. Perhaps not. It is difficult to know how much my deliberate and principled use of my own experience as legitimate data is an effect of my mother’s teaching from such an early age, or of the generalist principles of Scottish philosophy and culture, or both or neither, or of something else entirely. My experience of The Netherlands was that the Dutch are very trusting people who believe sincerely, and with a degree of justification greater than many others who believe that their systems of governance and public institutions are well managed for the benefit of everybody. This was the hope destroyed by Thatcherism and that has been under attack in NL since the rise of Rutte and the VVD as the country is pulled to the right by that nice Mr Wilders and the VVV. Thankfully in this country we have been spared the iniquity of compulsory health insurance, but that is coming too I suspect … at least to England; in Scotland the NHS has a slightly different legal status I believe and will in any case be protected when the country becomes independent of Westminster rule.

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