As I described in a previous post, the regular pain killing and cancer suppressing medication turns the night into a serious challenge. Nobody will be terribly surprised to learn that with the addition of chemotherapy medication, nighttimes have become extraordinarily difficult.
The chemotherapy is on a cycle of 21 days. On day one I go to hospital for the afternoon to be injected with a drug called Docetaxel. On the day before the injection and as the stuff goes in, I take a steroid called Dexamethasone; as the stuff does its work during the subsequent cycle, I take a small daily dose of a steroid called Prednisolone. Every afternoon for the first ten days of the cycle, I inject myself subcutaneously with a complex blood booster called Filgrastim which ensures I am better protected from infection.
Immediately on the way home from the hospital, on day one of cycle one, I began to notice the effects. My mouth became dry and tingly and my body felt as if it was on the verge of illness. After two days, these feelings intensified and I became randomly tired; although it had a familiar texture, nothing I ate tasted as I remembered. At its worst my body felt as if it had been stuffed into a barrel, which had been then rolled down a steep hillside. For several days, it felt like a nasty flu, but without the fever. Every joint and muscle ached and moaned and it became difficult to find any comfortable position. During the night I was wracked by hellish nightmares.
On day four, reeling from news of another white supremacist atrocity, this time in faraway New Zealand, I managed to get myself together to attend a fundraising party in Edinburgh organised by my awesome messenger friends, after which I felt as if I really had now retired.
As I have mentioned, my only source of income now is a PIP, which is almost enough to keep the wolves from the door, if I maintain a frugal, modest life, but not quite enough to be able to live in a state of financial security. Like most messengers on the planet, I was self employed for most of my career and so did not enjoy any of the taken for granted benefits of ordinary employment, like a fixed contract, regular income, sick pay and contributions to a pension pot. So the generosity of colleagues and friends will make a huge difference. Already, I have a greater sense of financial security with a little fund in a savings account, topped up from time to time via a crowdfunding site, from an online auction of assorted goodies, and the sale of little Munro Philosopher stickers – designed by Katie Gillon.
Many thanks to Katie for the time. Readers who would like a sticker, or several, for whatever reason should contact me through dncnspnc at gmail dot com with their address and preferred method of payment.
I was very glad that I was able to attend the fundraiser, so I could personally thank everybody who had given generously to my fund, particularly those who had travelled from far away places like Bathgate, Dublin, Christchurch, Utrecht and Glasgow, and to make a big shout out to the messengers at Kurierzentrale in Basel. Despite feeling like shit, I was able to join in the fun, for I knew if I was careful, took plenty rest, drank water when necessary and so forth, I would get through the evening by thinking of my condition as a kind of flu.
The day after the party, with the help of my lovely wife, I was also able to host my friends from De Fietskoerier Utrecht at home in Fife overnight into day six. In the morning, spurred on by the first cocktail of steroids and pain relief, I took them for a walk up the hill, for a look at the views over the Howe of Fife to the Lomonds and further towards snow capped peaks I crave to visit. Then, after my friends were safely on the plane, the chemotherapy steamroller hit.
It felt like my skeleton was on fire, that every joint in my body was about to explode and that my head was being very slowly compressed in a vice. My mouth was ravaged by weals and ulcers, nothing I ate felt much like food at all, and its descent into my gut was accompanied by intense, excruciating heartburn. The constipation became even more dense and immobile. During that night, it seemed my chest had been torn open and my heart pulled out with a big hook, which had snagged on my sternum on the way past. The nightmares were even more vivid and terrifying.
The seventh day was the worst. I awoke with a semi functional left hip, seemingly caused by a weakness in a tendon deep inside the joint. We managed with the aid of stick to get me to the surgery so the practice nurse could inject me my monthly dose of chemical castration, after which the steroids kicked in and we went for breakfast at Carnie, where I tried a bacon and egg roll to see if it tasted like anything.
As we enjoyed wonderful views back over the Howe, we chatted happily, still glowing with the good cheer of our friends from Utrecht, their visit bringing back memories for me of many years cycling through the streets of the city and countryside all around. And then news of that terrible thing. One of my friends told me later, he had cycled past just after it had happened and had been seriously traumatised by what he saw. Footage and pictures of familiar streets, familiar names. Then, just after I got home, the chemotherapy steamroller arrived again. It was that flu feeling once more, but with bells on, burning mouth, puffy hands, intense headaches and chest pains. I went to bed and stayed there.
On the eighth day, I awoke from a marginally less troubled night and began to feel something new, healing powers flushing out the poison from my body. I went with this for most of the day, enjoying the relative lack of pain, realising that I was perhaps into the recuperation phase, but towards the end of the afternoon I was overwhelmed by fatigue and fell asleep until about midnight. After which I was awake the rest of the night. For a while I wrote and read. Then I lay down in search of sleep. But I remained awake. At about half past four I got up to make bread and soup.
At the end of last year, I lost almost everything that is dear to me, the cat, my old Volvo, regular work, my commitment to natural health, my physical ability and connection to the mountains, to the land, to the planet. And now this hellish cocktail of pharmaceuticals, which, although keeping me alive and promising me another future, has tied me to a rigid routine for the next four months and continues to challenge me with its collateral damage.
At about half past five in the morning of day nine, as the bread mix was rising nicely and I was chopping the first of the soup vegetables, a hint of dawn light reminded of the many times I got up about now to prepare myself for a day in the hills, for a comfortable journey in my old car, accompanied for as long as VHF frequencies were able to penetrate the topography, by the soothing establishment tones of Radio 4, to a rendezvous point or directly to a parking place under a mountain.
I miss those journeys more than I can express. The feelings of grief and regret, of sheer rage, that I cannot yet get out again, lie just beneath the surface, too raw for words. This is the best time of year to be in the mountains. In that difference between winter and spring. What I would not give to feel again the crunch of frozen snow under crampons, the prickle of blizzard and spindrift, to breath in the moving air, the odours of peaty ground, to reach another new summit. I cannot yet contemplate the idea that I have already reached my last summit, it is too much to believe that that was it. I cannot yet anticipate a future entirely dependent on this poison. It may be keeping me alive, but what kind of life is this? Even when the chemotherapy stops and this life gets its promised extra months, what then? Will I ever be able to get back out again?
This loss is most difficult to bear. I have known many cats to die under traffic on busy roads, particularly round here, several are buried in the garden. Not having to go to work I can get used to, though I miss the craic. The old Volvo did a fantastic job taking me to many mountain parking places along many squiggly and bumpy roads, but it was on its last legs and I do not need it any more. My commitment to natural health is of course intact; in addition to all the pharmaceutical rubbish I ingest, I enjoy a clean, healthy diet of fresh fruit and vegetables – with an occasional bacon and egg roll, and I am trusting that my immune system and natural intelligence are kicking in to clear out dead cancer cells, while the other drugs do their supportive work.
Towards the end of the ninth day I went to bed because I thought I should get a good night’s sleep and get back into a sensible day night rhythm. I awoke again at midnight and could not get back to sleep. Those steroids again. So I wrote awhile, and read some. Then lay down determined to sleep. My body seemed to appreciate the rest, dreaming perhaps it was sleeping, but my mind was too active, too much stuff rattling about in my head, too much drifting between hallucination, imagination, perception, too much consciousness. The wind was up, rattling the house. For awhile I found some peace with meditation.
In the morning of day ten, I got up and ate a good breakfast, wrote some and saw that despite this odd pattern of sleep, these useless puffy fingers and a burning mouth, I am coming out to the chemotherapy.
The very fact that day seven was the worst, after which days eight and nine were progressively much less hellish, is enough to spur me on, to convince me that I will be able to endure the coming five cycles, and that thereafter there is a chance that I will get back out again to continue this quest to bag as many Munro as possible before the disease (or anything else) takes me from this life, and to breath again the sparse air of the high places.
Clearly, I have not yet given up.