Nighttime is the worst.
Most cancer survivors will probably say something similar.
My nights are dominated by nightmares, hallucinations, hot and cold sweaty flushes and painful calls of nature. I do not often feel that I have had a good night’s sleep.
The natural sleep cycles of humans vary between three and four hours, twice a night. Within each of these, there take place assorted biochemical and neurological recuperation processes, neurotransmitter production and cognitive realignment. Science has established fairly conclusively that sleep is for many reasons a necessary function of a living body. Apart from this, much has been written about sleeping; during the Middle Ages, for example, the ordinary experience of night was divided into a first and a second sleep, between which people would pray, medicate upon their dreams, have sex, talk quietly or whatever. In our times, night is regulated by the requirements of the working day, by the exigencies of capitalism, and it is normally experienced as a continuous period of non consciousness, mindlessness perhaps, often assisted by medication, recreational drugs or alcohol, during which, apart from a general sense of recuperation from fatigue, nothing of any great importance happens.
Before I was taking all this medication, my sleep was more or less natural; I regularly experienced the two sleeps known of in the Middle Ages, between which I meditated or contemplated calmly. Now the course of a night is determined by the cocktail of drugs I am taking, their interactions and side effects.
Side effects is phrase reminiscent of the military expression collateral damage. Whatever are the intended consequences of a particular medication or bombing campaign, these will have other consequences that are perhaps regrettable, but nevertheless necessary to endure.
I am of course grateful for the painkilling effects of the Oxycodone and the Gabapentin, of the reduction in muscle spasms offered by Diazepam, of the soothing effects of the Lidocaine patches; very pleased that because of the Tamsulosin my bladder is thoroughly emptied when I take a piss. But the collateral damage of all this makes life just that little bit more challenging.
Like everybody else, I experienced nightmares before the medication, but never with the intensity and frequency as these days. As far as I can tell, these and the hallucinations are a side effect of interactions between the medications; in particular with Gabapentin, which it is prescribed for neuropathic pain, and produces side effects largely neurological; the most palpable being a tingling above the surface of the skin, which moves about randomly and unpredictably, and the most extreme the sense that a body part is being encased – usually, but not always a limb. The hallucinations arise most often in the difference between wakefulness and sleep, when my body does odd things and I speak strange words that are irrelevant and inappropriate to what is actually going on. During the day, the hallucinations have been combined sometimes with panic attacks, the most intense and terrifying of which include a feeling of extreme claustrophobia, of being buried alive, drowned in detritus, crushed to nothing by powers over which I have no control – perhaps a glimpse of what is to come …. afterwards.
The major side effect of Oxycodone, like all opiates and morphine derived preparations, is constipation, which is not only painful, it makes me rather grumpy. While I was in hospital, I was on a much higher dose of the stuff and once or twice had to be helped with an enema – as well as with regular doses of a disgusting powder called Laxido, which is dissolved in water to give a pretendy orange flavour. Out of hospital I have weaned myself away from this stuff, to rely entirely on diet to keep me regular. The dosage of Oxycodone is much reduced, so the constipation is less of an issue, but it has not gone away, and answering nature’s call is always painful and nasty.
Degarelix is prescribed to suppress the disease itself and has side effects that are difficult, if not impossible to counteract – very similar to the effects of the menopause. The complete removal of natural hormone levels and cycles, in my case the suppression of testosterone to levels equivalent to chemical castration, interferes with emotions, physical strength, fat to muscle ratio and general motivation. It utterly destroys libido and produces hot and cold sweaty flushes at unpredictable times, which during the day distract me completely from whatever I am doing and at night add to the disturbance of natural sleep.
As if all this were not bad enough, I suffer from extreme flatulence – from both ends. My diet must contribute to this, I suppose, with all that fruit and fibre, but when I asked my oncologist about it, his response was simply to point out that I am taking rather a lot of medication, as if this were something quite commonplace, which I would simply have to thole. Also, when I have tried from time to time to cut things out of my diet in an effort to discover if a particular food has an effect on the levels and intensity of my burping and farting, nothing seems to make a blind bit of difference. Sometimes when I return to the bedroom from answering nature’s call in the night, the stench of farty air is overwhelming. In company, the continuous gurgling emanating from my insides can be embarrassing and is always extremely uncomfortable. My long suffering wife has to put up with a great deal, while visiting friends have to accept foul air in the house, which even with liberal use of incense, seems always to be hanging around. On the whole, the flatulence makes me anti social and toxic.
Fatigue is the most commonly advertised side effect of almost every medication I take, not to mention the fatigue of disturbed nights, of the disease itself, and of my efforts to live without letting it determine every moment of my existence. Fatigue is easily remedied with either sleep or deliberate activity; often I nap during the day or simply fall asleep while reading or sitting quietly, sometimes I am revitalised at the moment of dropping off by getting up and doing something. I nevertheless tire quickly, which is also perhaps a sign that I am not quite so young as I used to be, and since having retired my time is more or less my own, it does not bother me much. But it reminds me that I have a very long way to go before I attempt another Munro.
Recently I have been weaning myself off the Diazepam, taking the pain control to the minimum; my GP expects that the worst effects of cold turkey will be attenuated by the Gabapentin, which is both reassuring and alarming. Immediately after leaving hospital there were not many days when I did not have to take extra short acting Oxycodone to add to the cocktail, but as time passed there were more and more days when I had no need for extra pain relief, and any pain I experience at all it is more akin to gnawing discomfort or stiffness than to excruciating agony.
In addition to swallowing all these pills, I continue to care for my body as I knew before. Now though this has been intensified. For the experience of spinal cord compression taught me many lessons; fundamentally I am motivated never, ever, under any circumstances, to move my body in such a way that I will again experience spinal cord compression. This has made me more mindful of what I am doing than ever before, there are certain positions that I have to avoid; when my back is bent it cannot take any weight at all and I cannot pick up anything heavier that a book from the ground. Naturally I have developed new techniques for picking things up, making sure to avoid twisting and bending, keeping my back as straight as a rod, squatting and supporting my elbows on my knees before grasping whatever has to be lifted, using the still substantial muscles of my legs to do the work.
Next week I begin chemotherapy; a course of six cycles of 21 days. This will mean even more pharmaceuticals in my body; not only will I be injected with a poison – a drug called Docataxel, I will have to take assorted steroids and other drugs to attenuate the collateral damage and to increase the chances that I will survive the onslaught.
For all of my life, until this diagnosis I hardly took any pharmaceuticals at all – as I have previously written, it how I was brought up: Paracetamol and Ibuprofen from time to time for flu and such, maybe a dozen courses of antibiotics – usually for dental pain – and twice a course of anti inflammatories for pericarditis. That’s it. This body’s inexperience of pharmaceuticals is already taking its toll.
If I were fit enough I would be in the mountains right now, with my tent, sheltered on the grassy bank of a squiggly river somewhere, under a summit that may or may not the next day be up for bagging. I would be safe with space enough to think things through, find some perspective on this moment of this life.
I honestly do not know how the chemotherapy will affect me, whether it will put too much strain on my body, that it will kill my will as much as the targeted quickly mutating cancer cells, and my immune system. The potential collateral damage is extreme. After all, I am gambling the complete destruction of all fast growing cells in my body, on my immune system kick staring and recuperating enough to be poisoned again, and again, six times in total, for a few more months of a life sustained entirely by the ingestion of pharmaceuticals.
This is something I could more easily contemplate under a wild, cold late winter sky, miles from anywhere, snug in my own cocoon of technical clothing, fabric and geodesic simplicity. Sitting in a house by a roaring fire on a wild winter evening is a good place to write, but contemplating the really big questions is best done in contact with the earth, gazing at the stars. I miss that intimate connection; fear that I will never again experience it as reality. That it was at last only a memory.
At night, in a house, they creep in to haunt and stifle me.
The really big questions about life, and death. Of the suffering this humanity endures through sheer indifference. Of the value we give it and the absolute mystery of it all. Of what a precious gift this is and what a complete mess I have made of it. Of all the things I should have done, or should not have done, and how things might have been otherwise, of how grateful I am anyway.
Nighttimes are always the worst.