Day One – Tuesday May 14th
My scheduled appointment at the Victoria in Kirkcaldy is at 11:30. We arrive promptly and are shown to a place in the day room. It is becoming a familiar drill and I recognise the staff; also some of the visitors. Today there is an unfamiliar face in the corner – a young woman, probably still in her thirties, hooked up to a huge and lengthy dose that will span my visit. She seems happy, sharing the time with her man, playing games and watching films, resilient and determined, but we are sad to see someone so young going through this.
Immediately I am weighed – 69kg, a slight rise, those steroids – my blood pressure, pulse and O2 uptake measured – 114/64, 78 (higher than before the treatment, steroids) and 96% respectively – and the backs of my hands investigated for juicy veins, into which a nurse skilfully inserts a cannula, which she then secures with tape and a sticky patch. For half an hour I am infused with saline, to prepare my veins and ensure the pump is running, and presumably too, to set me at ease.
Just after twelve, we are told that my poison has not yet arrived from the pharmacy and that we will have to wait a little longer. No problem at all. We have nowhere else to go. At length, the stuff arrives and for an hour I lie quietly as it is pumped into my body. After only a few minutes I can begin to feel a familiar sickly, metallic taste at the back of my throat. At the end of the infusion, the feeling has moved forward and is beginning to turn into the burning mouth thing. Before we leave, we confirm that the PSA has dropped again slightly, from 2.4 to 2.3.
We drive home in the heat of this sudden summer, which does nothing to help the flushes (side effect of hormone medication – degarelix) and brings me out in a permanent cold sweat. I try to ignore it all and carry on with domestic chores. We discover that the frogspawn I brought back for our new pond from my trip up Geal-charn and A’ Mharconaich three weeks ago, has become tadpoles. For a while I sit in the shed watching the insects hatching over the garden, trying to rest. But at about seven I have to succumb to the growing discomfort and find sleep somewhere.
For a while I am overwhelmed by fury, by the manifest fuckedupness of things, by indifference to consequences, blind reactive behaviour, evil fuckwittery and knuckledragging narcissism, by the petty resentments and casual violences that seep into daily life as this world lurches nastily, dragging the political centre ground to the extreme right, by this disease and what I have to endure because of it. Mostly though I just feel like shit and my mind immediately gets lost in resentment, why do I have to go through this? I work myself up into a condition so despondent that I believe I will never be able to get through this cycle, let alone two after that. But the die is cast as soon as the infusion begins and I have to ride it out. The immediate feeling of poisoning contrasts so unequivocally with the exhilaration of coming out of the poisoning into a condition of health sufficient to climb a couple of wee mountains on the last day of winter, that despair and despondency are probably inevitable. After bawling and ranting awhile to my beautiful long-suffering wife, at about seven thirty I go to bed. At one point I wake up convinced I have slept a whole night and go downstairs to ask my wife how long she has been up – a question that is for her utterly meaningless until we realise I am hallucinating again. I go back to bed and do not wake up until after midnight, drenched in sweat, just as my wife comes to bed. We replace the winter duvet.
For the rest of the night I lie awake, reading stuff on the interwebs, chatting with chums on the other side of the big water, writing and meditating. At 03:43 precisely, the first chirp of dawn chorus breaks the silence. Within seconds it is a cacophony, much louder, extensive and various than in previous weeks. For the next hour and a half I lie meditating upon this beautiful noise, nature’s free-form jazz, until it gradually peters out, as presumably the players go about the ordinary business of the day, foraging and looking after their young. When I get up, I feel better. No more furies, only mental calm. Quiet acceptance of the things I cannot change and strength to change what I can. I guess that every day is always a new challenge to find the wisdom to know the difference. More positive again. Holding onto this at the start of day two.
I decide to cut out 300mg of Gabapentin from this morning’s cocktail, leaving me now with a total of only six pills a day. Gabapentin is one of two baseline painkillers, it is prescribed against neuropathic pain; the other, Oxycodone, is a more regular morphine analogue against general pain. At the height of the spinal cord compression Gabapentin was a vital weapon in the arsenal, but it continues to contribute to hallucinations and produces very strange mental imagery, to which I have become, rather alarmingly accustomed. Now with such low PSA levels, it is unlikely that there is any cancer impinging on any spinal nerves. But there are withdrawal symptoms that can be unpleasant; going through cold turkey, at the same time as coping with hot flushes and chemotherapy is maybe just a bit too intense right now.
The calm positivity of the morning is sustained throughout the day. The tadpoles are flourishing, whole flights of swallows appear, the weather is hot. We potter in the garden and go for a stroll in the woods.
The burning mouth is rising and my sense of taste departing. More general discomfort is beginning to permeate my daily experience, sending me into naps or off to bed, whete I can endeavour to lie perfectly motionless, bracing my body against the poison. My pissing is getting nippy again, but nowhere near as constrained as at the beginning of the last cycle, when my waters were barely able to pass at all for the first week. This feels better than last time.
At the end of the day the calm is maintained. Peace resides here. No pain has emerged from the reduction of baseline neuropathic painkiller. But sleep does not come so easily at night. It’ll be those steroids again.
I wonder what time birds will begin.
Still awake at three. Not even sleepy.
At three forty-five the birds begin to sing.
At six I get up for breakfast and afterwards fall asleep until lunchtime. These steroids make me hungry, even although my mouth is burning and food tastes like metal.
Every time I awake during the morning, the creeping chemo malaise grows stronger. I ignore it as best I can.
In the afternoon, I get up and potter, but I am still wobbly, always bracing myself against the effects of the poison.
It is less hot than yesterday and I am more weary.
I remain calm and positive.
Miraculously I sleep during the night. Only a few hours, but it is sleep!
The day is much colder and brighter. The chemotherapy lurgy grows slowly, now including joint pains and random tendon twinges.
I do not do much, though I discover a complete library of Star Trek on Netflix, which is occupying my attention nicely.
There have been slight discomforts in my lower back, suggesting perhaps that the reduction of Gabapentin may have been premature. I shall have to monitor this. Although it is likely that the destruction of bone marrow is a more plausible explanation for any bone pain.
Despite increasing discomfort and sporadic pains, the calm positivity continues.
With the post this afternoon there arrives a fat white A4 envelope containing every blood test result I have had since returning from living abroad. With this I will be able to make graphs and look to see whether the PSA profile is at all influenced by my dietary discipline or any other alternative interventions. The most obvious and remarkable trend in the numbers, just at first glance, is a relatively small rise in PSA during 2017.
This was the year I decided to walk away again from traditional medication, to concentrate on mountains and mindfulness, during which I reached 54 new summits and enjoyed a number of spiritual epiphanies.
During the night, the heartburn returns and in the morning the rise of the lurgy continues. The day is colder again. During the morning it begins to rain heavily.
I am still calm and positive.
Later in the afternoon my friend Karen arrives from a week bikepacking round the Cairngorms in glorious weather. She was planning to cycle here, but given the weather my wife decides to pick her up in Perth. We have great fun together. The chemo lurgy is less insistent, still coming in waves. Karen shows me the route she took with her friends through the Cairngorms along familiar paths and glens. It is good to catch up, to be reconnected with my old life back in the flatlands.
Despite such good company, the lurgy rises, with for a while in the evening a return of claustrophobia, which is very unpleasant and scary. The joint, tendon and bone twinges come in waves, with each penetrating deeper than the last. I smile through gritted teeth, trying not to be a wet blanket. My teeth feel as if they are rattling loose in my jawbones, that I could reach in and pull them out.
More of the same. The whole day I lie in bed, intermittently sleeping, trying to read and write, occasionally rummaging round the kitchen to find anything to eat that will be at all palatable. I have reached the few days of the cycle where in order to maintain nutrition I have to force myself to eat. This cycle is proving more challenging that the first three; it is difficult to find anything that does not taste like metal, sand or glass. I eat less today, simply because there is nothing in the house fitting the description of food. I have been putting on weight (those steroids again) so I can surely afford to live off reserves for a couple of days.
In between sleeping, watching random episodes of Star Trek and forcing food down my gullet, I begin to examine my PSA profile. I have data for nearly the last seven years – since the end of September 2012, so I make assorted graphs covering both the whole period and selected sections, which I can link to what was going on in my life at the time.
The crucial measurement of PSA is not the brute value itself, but rather the manner by which it changes through time. For the purposes of so called stage progression, doubling time is the crucial variable; the time it takes for the PSA value to double is an analogue of the exponential growth of cancer cells. There are four periods on my profile that depict the classic parabola of exponential growth; three when I was moving into the clean phase of intermittent hormone medication schedules, and a fourth from the start of 2018 until my hospitalisation. At their most active, the cancer cells were doubling in number every six weeks. But these events occurred during quite specific periods – it takes considerable cropping of the timeline to find clean parabolas with a regular doubling time.
More interesting are the places where this clean deterministic progression is subverted, where something different happens from the theoretical expectation. I will have to examine these another time more closely for any special significance.
I sleep for only a couple of hours. The heartburn is insistent. My chest and ribcage seem to be on fire. Burning mouth, itchy teeth, cracked lips. My joints and bones ache. Something in my head pounds as if to push out my eyes from their sockets. My spirit is low. These are difficult hours – even with the splendid distraction of the final episode of Game of Thrones.
I expect today to be one of the worst, and it is not easy. Porridge tastes like papier mâché.
Later another visitor arrives, which is lovely. As well as Karen from NL we now have Trish from Zimbabwe. It is wonderful to have such interesting company, but my sporadic sleep patterns do not easily dovetail with our visitors’.
At the end of the day, I awake from a deep sleep with no idea of the time and feeling less unpleasant!
I manage to enjoy a conversation with Trish before she falls asleep.
The return to health has begun. It will take a few more days for the pains and twinges to subside completely, and for food again to taste like food, but the miracle of life has again proved more powerful than the poison of chemotherapy.
Only two more cycles to go.