People often tell me I am doing very well.
The last was my oncologist, just after he showed me a bone-scan with a couple of wee hotspots, one on my neck and the other in the centre of my back, both of which coincide precisely with little niggles. In comparison to the scan taken immediately before I was admitted to hospital, before all the radiotherapy and chemo and so forth, this latest scan is demonstration that the treatment has been working. I am less ill than I was a bit more than two years ago.
But I should back up a bit.
Towards the end of last year my PSA began creeping up again. Slowly, steadily and not yet exponentially, but in spite of hormone suppressing medication. So I began a process of reassessing my treatment and preparing for the next stages in this unfolding trajectory. My GP happily recognises that I know rather more about prostate cancer and the medication used to manage it than she does and my oncologist, who is now head of the department, is happy to share his extensive clinical experience and all knowledge of what is going on in my body because he knows that I will know exactly what it all means.
This is the whole point of taking control of a medical trajectory.
In the wake of the rising PSA I had a thought, which I put it to both GP and oncologist.
At the start of 2017 I stopped taking a drug called Decapeptyl because, despite its influence on the rest of my bodily functions, it was no longer preventing the rise of PSA.
After this, I lived for almost two years both medication and medical knowledge free. These were the most awesome years of my life, for very many reasons, not least of which getting married to the love of my life and climbing a total of 92 Munros. But then it began to fall apart and I was taken into hospital in the most excruciating pain imaginable. The bliss of my ignorance was shattered by the reality of cancer and I entered another process of reassessment and transition. Life went on. I was blasted by radiotherapy, injected with hormone suppressing medication, pumped full of addictive and hallucinogenic painkillers and then subjected to the hell of chemotherapy. At the end of this process, no tumours were visible on any scan and my PSA was stable.
I was doing very well.
My own process of removing all but absolutely necessary medication from my body continued. Towards the end of last year I finally managed to break through the Oxycodone addiction and I lived for a while with only a drug called Tamsulosin to help me piss and the monthly Degarelix injection to suppress the disease. But as a consequence of the removal of the last painkiller, I began to feel a number of unpleasant and troublesome aches. To a large extent, the continuous presence of Oxycodone in my body had masked some of the ordinary twinges of being sixty-something, but there were other sensations that bothered me. The good Professor’s presentation of my scan was confirmation.
Now with the PSA creeping up again despite Degarelix, questions arise.
Is this the same cancer that has just been seen off by the barrage of medication, radiotherapy and chemotherapy?
Is it the same cancer that became resistant to Decapeptyl or is it a different cancer?
One that has not yet had the chance to become resistant to Decapeptyl?
I put this to GP and oncologist alike and they agreed. I will therefore be coming off Degarelix and returning to Decapeptyl. Both of these drugs are what is known as GnHR agonists and work by shutting down the master hormone production system deep inside the brain. As far as both GP and Professor are concerned it does not matter which of these I take, but in addition I am to be given a drug called Abiraterone, the collateral damage from which sounds pretty fucking nasty, which costs two and half grand a month, can only be dispensed at hospitals and is necessarily accompanied by steroids to support my immune system and vital organs during its pharmacological assault on my body. So that’s good.
I am doing very well.
It is difficult to explain to well intentioned people acting in good faith, whose dedication to care and medical intervention is absolutely exemplary, that being told I am doing very well does not always fill me with reassurance. Sometimes it unleashes the whole cascade of emotions I have experienced throughout this journey; whole packs of black dogs, armies of incandescent furies, intricate networks of intellectualised denial, false hope and natural faith, acres of self indulgent grief, oceans of despair and absolute terror of the future, of how it is going to end. And eventually when all the rest have played themselves out, mountains of peace, open skies of reflection and eternally gurgling burns of just being alive.
The only mountains I can visit are in my head. I am forbidden by increasingly absurd, impossible to police, contradictory and draconian measures from travelling beyond the borders of my region. I am a law abiding citizen (on the whole) and have no desire to make an idiot of myself, but if I find a chance under the radar to sneak away and disappear up a glen with enough on my back for a week, then I am taking it. My mental health is suffering. I need to get up some mountains again before it is too late.
But apart from that I am doing very well.
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Thank you for reading. Never give up. Love and peace.