I have been dreading the writing of this post, putting it off and vacillating, finding other things to do, or nothing, in order not to engage with what must be written, lest my story be left hanging in the air. I suspect too it will the post my readers will have been fearing for a while and might find difficult to read.
Since I came off Fionn Bheinn with Martyn and discovered that my frame had miraculously righted itself, my condition has been nevertheless deteriorating. It had crossed my mind that this renewed bodily stability might see the beginning of a return to mountain adventures, but it was not to be. The fates had other plans for me.
Of course I have been out and about since then. I have been away with my wife in the campervan and I have been up one or two little hills with Martyn, but despite best laid plans to visit the hut at Achnasheen again, I have not been near any new Munros. Only a few days of autumn colours with my wife in a cottage in Speyside under the mighty Cairngorm plateaux, looming with their tops in turbulent clag.
The pain began at the end of September, during our holiday to Barra and the Uists, with a dull familiar ache in my right hip and thigh. Later I saw on a bone scan that the lowest section of my pelvis on the right is riddled with disease. To some extent this was a relief, for the pain had an eminently femoral shape in my mind. Seeing that despite my fears, the disease had not yet descended into my legs demonstrated nicely that pain is often referred, related only to nerve damage or impingement.
This was also an important lesson about the necessity of both objective observation and subjective experience in coming to understand what is going on with a body. On the same scan I saw hotspots throughout my upper skeleton; in pelvis, ribs, spine, shoulder and neck, all of which could be associated easily in my mind with both specific pains and difficult to locate aches.
This was however just the start. My body has been presenting many new reactions and restrictions, arising partly from the disease itself, partly from the side effects of medication, partly from the mental distress of knowing that the medical options are now extremely limited, that this journey is only going in one direction.
It is very difficult to separate out physical symptoms from effects of emotional collapse. For whatever reasons, my body has been lethargic and listless, with extreme sensitivity to external temperature fluctuations, combined with an inability to regulate internal temperature. Under certain circumstances, the border between freezing and overheating becomes tiny, with no bearable place on either side.
I also experience periodical bouts of intense nausea, except that it is not nausea in the sense of an upset stomach, rather the diffuse feeling of a body accumulating toxins, some of which are pharmaceutical metabolites, the rest the byproducts of the cancer eating away at my existence. A platoon of minor twinges and grumbles adds to general feelings of sickliness and decay.
Of course, I am under the care of highly experienced and competent medical professionals. Perhaps there are others whose experience of the NHS is not as positive as mine, it is certainly underfunded and it is palpably straining at the edges, but it looks after me and those like me with absolute commitment to the principle of care at point of need. GPs have been juggling painkillers and daily medication while the Professor and his impressive team at the Edinburgh Cancer Centre have offered everything they can.
After the PSA began to rise again, I was taken off the last anti cancer drug, Aberaterone, because it is a poison, designed to screw up testosterone production in adrenal glands, but which puts too much strain on livers. I am still under the influence of the three monthly injection of hormone suppressing Decapeptyl, which is also probably gradually no longer working. But this remains to be seen. I am due another injection at the start of the year.
The only anti cancer medication available now is more chemotherapy. This might give me an extra three months. Like many others who have experienced it previously, I do not wish to add its hellish side effects to the aforementioned pile. I would rather not have three extra months of another particularly unpleasant kind of poisoning thank you very much, and would prefer to take my chances with mindful healthy living for however long I have left. A course of Radium was also suggested, which will help against bony pain, but this will do nothing against the disease and make me radioactive for four days every month.
While contemplating all this, a lump appeared rather quickly in lymph nodes above my left clavicle. With this I was thrust into a panic. This thing seemed to have appeared in no time at all; I feared it would continue growing at the same rate and kill me before I knew what was happening. It was too soon. It was tight under my skin with radiating discomfort into my armpit and up my neck. So I phoned all the right people, whereupon I was invited to be examined by my GP and then to be scanned in lieu of radiotherapy the following week.
Less than two weeks later, in the aftermath of radiotherapy I felt calm. I was prescribed steroids too against the flushes, and a drug against nausea, which both seem to be working, and the lump under my neck is much less insistent than it was when it first appeared. Though I am mostly lying in bed, inactive, with a broken body, exhausted by radiotherapy, while other new pains pop up to send me into panics, digging deep once more for the strength to carry on with this life in some way that will preserve my experience of the great outdoors and prevent me succumbing to despair.
My oncologist had to have the formal conversation about my not wanting any more chemotherapy; he understood and respected my decision. He was pleased too that the radiotherapy seems to have done the job. I also signed up gladly for the course of Radium, because at this point my biggest problem is diffuse bony pain. I am already on a fairly substantial dose of Fentanyl, supplied by skin patches and supplemented by short acting oral Oxycodone, paracetamol and lidocaine patches over the hotspots. Maybe the Radium will reduce the need for the other drugs. Whatever else, opiates, painkillers and analgesics are now among my dearest friends.
We all know we must one day die, that there is only one way out of this life. The prospect of this particular kind of death has however been on my plate for more than nine years; knowing now that I have likely climbed to the summit of my last Munro is much more traumatising. The greatest loss I must endure. The desire that it be otherwise, the greatest burden yet to be released.
I guess I just have to continue walking locally in the woods, along the river and up and down beeches for my outdoor pleasure, and to think myself fortunate that I can still to do this at all, or at least, once I am able to drag myself out of bed.
It will probably take a few weeks yet for me to get any strength back. Radiotherapy leaves a body tired – quite literally burned out – but it seems to have worked. The lump has been reduced in size and I feel less poisoned and nauseous than I did, as if fewer toxins are building up. Whether this has to do with the complex cocktail of drugs, the destruction of cancerous cells from my lymph system, or the cleansing out of pharmaceutical metabolites, does not much matter. I have slowed down a bit too, found some peace inside with acceptance of my condition, happy to take advantage of medication to ease pain and calm distress, to seek help remaining always in the moment.
I am glad I took the tally of Muros above 200, to have the three peaks of this year in Wester Ross as a kind of coda to my journey. Had the world not locked down, I would have travelled much further than here, in particular into West Monar to the south of Moruisg and through Fishefield to the north of Fionn Bheinn. Maybe if by some miracle, I can hunker down through the winter, healing, keep myself healthy and calm, control the pain and move slowly, maybe I can get out again in spring. For this frame is still symmetrical and there is still power in these legs.
It always begins with short steps. It is three years now since I was hospitalised with cord compression and a PSA of nearly 3000. Physiotherapists came to my bed to assess me, so I told them I was intending to walk up and down the corridor of the ward to practice moving about with a view to getting up a few more Munros. They never came back. I have to accept now though that I probably have been to the summit of my last Munro. But at least metaphorically, I will be walking up and down that corridor.
I do not know what I am going to do with this blog – although the offer of space remains open to others who have something to say about the shiteness of being Scottish. I will be keeping myself busy with reading interesting stuff, and I will continue working on the book version of the blog, the first half of which is nearing completion. I will keep readers posted about my condition and although I do not intend to go gently into this good night and shall forever rage against the dying of the light, I will be moving back a bit from engagement with the world I will be leaving behind. Simultaneously staggeringly beautiful and irredeemably fucked up, I do not believe I have much more to say to it that I have not already said, nor that much of the world is terribly interested in the ramblings and freflections of this old dinosaur. It remains to be seen.
I would like to thank my sponsors, friends, colleagues, my brother and family. Martyn is a veritable inspiration, continuing to bag hills on the minor lists on his own in the middle of nowhere and to get me out and about whenever he can. Chris and all others who have been up mountains with me have always been fantastic company. Above all, awe and gratitude to my amazing wife for bringing so much love and joy into my life and supporting me in so many little ways. I feel truly blessed and fortunate to be surrounded at this time by such lovely people.
If you feel able to contribute to maintaining this blog free of adverts or to support me as I turn it into a book, I am grateful for all donations. Please send to: dncnspnc at gmail dot com via PayPal with reference ISBS – it’s shite being Scottish!
Love and Peace
🙂
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