(Squamous Cell Carcinoma)
From November 1978, for two years, I was Chief Programmer (Southern Region) for the New Zealand Department of Health. In that role, among my project responsibilities, was the conversion and customisation to local conditions of software for planning radiation treatment therapy, to be used mainly for the treatment of various forms of cancer. Unsurprisingly, that required my learning quite a lot about the physics and pathology of high-energy radiation as it passes through the surfaces and tissues of the body, and how that, in turn, affects the uncontrollably dividing cells that form the cancer, so to render them incapable of further division and then vulnerable to being cleaned up by our body's white cells.
Forgive my simplification of what is actually a very complex subject.
A Personal History of a Cancer Treatment
Sometime in 1988, I noticed a slight swelling in my neck (on the left side, as it happens), coincident with a cold - or perhaps a touch of 'flu. It seemed to pass.
But, though it ceased to bother me, and I ceased to notice it any more, perhaps the swelling never entirely went away.
Late in February 1990, my wife, watching me shaving, suddenly commented: "That swelling on your neck - actually it hasn't gone away. I think you should see a doctor."
So, I made an appointment to see my G.P. and at 10:30 on 1 March, 1990 (a Thursday) he saw me, and to my surprise, ordered a CAT Scan, which was duly done on Friday, the following week.
When the scan results were delivered to my doctor, he immediately referred me to a vascular surgeon, who saw me four days later, and that Friday (16 March) I was operated on and a mass removed from the left side of my neck, having been dissected from the carotid artery, around which it had apparently been quietly growing. Left to itself, as it 'grew' it would have gradually cut off the blood supply to the brain, which would, among other effects, have further reduced my intelligence, and certainly cut short my longevity.
In April and May that year, my neck, now freed from its lump, was further investigated. I wasn't sure whether to go for the radiotherapy, as it wasn't certain that it was necessary (because, perhaps, there might have been no metastatic spread), and it can have quite drastic side effects. My G.P. was most supportive and helpful throughout all this drama. He arranged for me to see another surgeon, who was quite unambiguous.
He told me: "I am a cancer surgeon. I have seen and operated on many hundreds with cases like yours. If it were me, I'd get myself down to radiotherapy as fast as my little feet would take me. It is truly, absolutely necessary for you have radiotherapy. Have no doubt, and don't delay!"
Soon after, I had a plan drawn up for radiotherapy - apparently to 'kill off' any cancer cells that may have escaped the knife. I asked to see the 'plan' and was told that 'plans' were not shown to the patients. My doctor would explain the procedure to me. Well, of course my GP knew less about the subject than what I had needed to learn so I could carry out my earlier project. The hospital radiotherapist would (or should) have known more, and when I was his patient would be available to answer any of my questions. In the meantime, the technician asked me if would I please sign the "Informed Consent".
Well, as I had not been able to view the plan, and could not speak with the specialist, I was somewhat stymied. I went back to my G.P. who finally arranged me to have a consultation with the radiotherapist, who arranged for the radiotherapy technician to show me 'the plan'. The plan that I then saw was, to my way of thinking, not appropriate (to put it simply). I made another appointment to see the radiotherapist. He assured me that, if as the treatment progressed the results were not satisfactory, the plan could be changed part way through, because, as I already knew, it is to a great degree the cumulative radiation rather than the individual sessions, that dictate the final outcome.
The consultant also discussed with me the hoped-for outcome, and the side effects that could be expected. He asked me if I enjoyed wine. I said that I did (of course). He suggested that if I could, I should do a lifetime of drinking and fine dining in the next few weeks, because after then my taste buds would be destroyed, perhaps irrevocably. After that discussion I went back out to the waiting room, sat down and wept. The loss of the pleasure of wine meant more to me than the possibility that I might die.
So, anyhow, I signed the release and made a time to see the technician and be fitted with a clamping mask that would hold my head quite stationary and in exactly same position for each daily session of twelve seconds each side, under the radiation source.
The technician, on meeting with me again, said: "Ah, it's Mr. Collins who refused the treatment" and made as if to leave the room rather than fit me with a mask.
So I replied: "No, I wanted the treatment, and still want it, but as you could not provide me with the information you had, and which I needed, I could not in all conscience sign an Informed Consent. But now that my questions have been answered, and I've signed the release, please, may we now proceed?"
In a few days the mask, of strong, transparent Perspex, was completed and lead blocks shaped for each side of my head to shield my gums from radiation - so that my teeth would not fall out. I was taken into the treatment suite (which I will describe shortly), the position for my mask was set up with a jig on the treatment bed, and bars fitted to the treatment bed to go under my arm-pits and for my gripping with my hands to that my upper body and head could be held quite immobile. The settings were confirmed with ceiling-mounted lasers, which would be used every working day during the coming months, to ensure the beam would each time radiate exactly the same area of my body.
Then the treatment began, Daily, from Monday to Friday, late in the afternoon (for the clinic had kindly scheduled me then so that I could continue going in to the office) I would drive to Royal North Shore Hospital, in Sydney, leave my car in the Radiation Oncology Parking area, go in to the changing rooms, strip to the waist and when called, go in through the lead-lined labyrinth (which traps the radiation, as it can't go round corners), through the remotely controlled, heavy steel and lead door, then lie down on the motorised treatment bed, have my head clamped down in its mask, while my arms were held in position with the bars at arm-pits and hands.
Then the two clinic nurses would get me to speak my name and date of birth, (which I gather went into the permanent record of the room's CCTV) and retire to the control console outside the shielding, in the clinic. The big door slowly shut, finally settling into position with the solid 'clunk' of the interlocks.
I was alone with the 'death ray' which was emitted, from the huge robot at the head of the bed, with a typical Science Fiction buzzing/humming noise - for exactly twelve seconds.
Then the robot swung the radiation source over me to position on the other side of my head, and activated it for a further twelve seconds.
Finally, the safety interlocks clanked open, the motors swung the door back into its recess, and the nurses returned, unclamped me, put all my jigs back into their storage shelf and escorted me back to the dressing area to retrieve my clothes.
Time, fifteen minutes. Five times per week.
As the weeks went by, and the cumulative dose mounted, the side effects become more pronounced. My throat became progressively more sensitive and my strength became progressively less. I was effectively suffering controlled radiation sickness. Eventually I found eating almost impossible and lost almost a third of my body mass. I could not talk - indeed, I could barely whisper and finally carried a pad and pencil so I could communicate.
I went back to the radiotherapist and on my pad wrote to him asking whether he might now agree that it was time to amend the treatment plan. He took one look down my throat, agreed immediately and amended the plan.
The change was simple: instead of twelve seconds per side - once per day, I would be treated with six seconds per side - twice per day. The therapeutic cumulative dosage would thus be the same, but the intensity of each exposure would be halved, and though the frequency would be doubled, the body would still have sufficient time to largely recover from the reduced dosage before the next one.
The effectiveness of the treatment would increase, if anything. This would be because the purpose of the radiation, in this regime, is to damage the DNA of the cancer cells when they are at their most vulnerable - at the point of cell division. This causes the division still to produce two 'offspring', but with damaged DNA, and thus unable to reproduce in turn. Being at its most vulnerable the radiation required can be minimised thus minimising the damage to the host (me, in this instance). Because the cells division is an ongoing process, the disrupting radiation should ideally be continuous (which can be achieved with implanted radioactive material - as is done with localised tumours such as prostate cancer). Next best is frequent exposures to minimal 'blanket' intensity, progressively less effective as the intervals (and intensity) are increased.
The treatment hypothesis would have been that, despite the surgeon's care to remove the tumour with its encapsulation intact, some metastases had escaped and should be dealt with before they implanted, multiplied and spread further.
Eventually, the treatment series ended. I was a shadow of my normal self, emaciated, listless, dumb (literally), but - still alive.
Five years later (because cancer 'survival' rates are measured as at five years after treatment) my reviewing oncologist, a member of the Australian College of Surgeons cancer review board, told me that of the several hundred squamous cell carcinomas treated in the same year as I, there was only one survivor - guess who? He put that down to the change of treatment plan. Why, I asked, had that plan not been used from the start, on all of us? Simple - there were not sufficient hours per day to treat everyone with twice as many exposures. Some thought was being given to running another shift, but until the extra budget had been negotiated and approved, it hadn't been going to happen.
But to this day, the thought remains with me, that perhaps the vascular surgeon had been correct all along - that he had managed to get the tumour out intact, encapsulated, leaking no metastases; and that the radiotherapy had never actually been needed, regardless of the treatment plan; and that my survival (and the others' deaths) had nothing at all to do with budgets, treatment schedules or any such factor. Maybe, once it had metastasised, a squamous cell carcinoma was, at that time, always fatal, and mine hadn't, so it wasn't.
In the meantime, as my surgeon then advised me, I should look both ways before crossing the road as I was more likely to be killed by a bus than by 'my' cancer.
Thereafter I signed up for the local gym, purchased a bicycle, new skis and boots, and worked hard at increasing my weight and fitness over a decade or so. Recovery was slow, but in due course I was cycling 90 kms of hill country each day, routinely carrying a friend up and down hill-side staircases with several hundred feet of rise, and doing quite advanced skiing - eventually being elevated to Instructor by the Canadian Skiing Association.
What did I think, or feel, throughout the extensive period while all this was happening 'to me'? The answer turns, probably, upon my philosophy of life.
I'm a fatalist. Well, I believe I'm more of a 'modified fatalist'. Perhaps a 'fatalistic pragmatist', or a 'pragmatical fatalist' maybe. I do hold that 'shit happens' (that's fatalism) but that when it does, the better you are prepared, the better the outcome (within reason - whatever that means) - which is the 'modified' part. A true fatalist assumes that "shit happens and there ain't nothing you can do about it". That's not me. Because, most times, there will be something that you can try, to deal with 'the shit'. I'm probably also somewhat of a hedonist, and you might also see some aspects of liberal humanism. Whatever labels you use, they certainly got me over that particular set of hurdles.
Back to 'my adventure'. What adventure? I well recall thinking that dealing with a cancer was like going bush hiking - you could get lost and die, but with luck and perseverance you might just find your way back to civilisation, however, in the meantime, as you stumble along, why not enjoy the view and experience the adventure?
So, I continued, as long as I could, going to the office. I mocked up a headset with a miniature microphone clipped to my spectacles and a modified pocket transistor radio to provide a loud-speaker, so that my whispered lectures and presentations could be heard clearly throughout the auditorium. Eventually my partners asked me to stop - it was creating so sepulchral an atmosphere that it was distracting the listeners from the message itself.
For pain control I was provided with Xylene gel. That did work - sort of. It did numb the sensation, and did lubricate the inflamed tissues, but I couldn't stand it. I couldn't stand the sensation of that part of me being cut off from the world (cancer hadn't dulled my drive for experience). So, the Pain Control Clinic offered me a place at their transcendental meditation sessions, as an alternative therapy. This struck me as bizarre - I'm not a spiritualist (or, at least, I didn't think I was) - and surely modern, evidence-based medicine would have no truck with such hoodoo. And yet, here was a hospital department actively involved in thaumaturgy. And so I thought; but in 'try anything' mood I went along and took my place.
I was sorely dismayed, as I sat there, hardly able to hear the group leader - there were jack-hammers remodelling the next room, right through the wall from where I was sitting. Then I thought they must have stopped - an hour had passed, and actually they were still pounding away, right through the wall. I had hardly been able to hear the group leader say: "That will be all for today, I'll see you all, same time, next week." I have no idea where the intervening hour had gone. I only know that I had felt supremely peaceful, and rested. Eventually I learnt how to meditate that way without needing a 'leader' and never used xylene again.
Anything that supports or enables the same or similar mental state can have those effects. Mental concentration, of the right sort, can do that. Sex is good at that, too. For some people (and before this period ended I became one of them) during sex, their focus becomes internal and all extraneous sensation is blocked from their consciousness. Even now, with a hip that is progressively hurting more with the passage of time, for some reason, during sex there is no pain at all. Though, to be even-handed about it, perhaps it's just the oxytocin and endorphins. But meditation seems to have the same effect - perhaps the mind can regulate those hormones on demand, and not just during intercourse?
Back to psychology: the clinic decided that I seemed to be somewhat stressed ("maybe I'm going to die" - what is there to be stressed about?) They signed me up with the hospital counselling service and for several months I had a weekly session with the resident shrink. It must have helped, for eventually he said that he had done what he could and the rest was up to me. I'm still not sure whether he meant that he had achieved a good result, or whether perhaps he had just given me up as an impossible cause. Either way, I had escaped the strait-jacket.
Among the side-effect of the radiation were the destruction of my taste buds, saliva glands, and swallow reflex. My mouth also became exquisitely temperature sensitive. I couldn't stand cold beer - I needed it warmed before I could tolerate it. Oddly, I found ice-cream to be pleasantly soothing, but I guess that was psychology at work again. My life-long love affair with wine was, for very many years, quite destroyed. Good wine tasted like petrol. Oddly, I was still a connoisseur - I could tell the good from the bad, (which tasted more like kerosene). But the joy had completely gone.
Previously, I could grade a wine-tasting into sweet, dry, alcohol content, growing region, tannin, and target price. Afterwards? Petrol or Kerosene. Even after thirty years, in which I have largely recovered, I find I have still lost all the appreciation I used to have for carefully worked acidity, tannin, oaking, alcohol content and all that goes into a great year. Now, I crave more the soft and sweet, and generally low alcohol. Juvenile tastes.
The lack of saliva (it has now mostly recovered) made for an amusing pub trick. You will have heard the one about the farmer's son who bested the 'travelling salesman' not to be able to do what the boy could: by daring him to a challenge in which they both kissed the boy's gorgeous sister, then the boy pulls out his penis, says: "that was easy, but do this then ..." and twists his member into a pretzel ...
Well, my spin on that was to bet a round of drinks on this challenge: we both would thoroughly chew up a dry biscuit, then I would say: "that was easy, but do this then ..." and having no saliva could blow a cloud of biscuit powder into the air! Unbeatable!
Almost thirty years have passed since I was diagnosed with squamous cell carcinoma, operated on. irradiated, and began the long, slow road to recovery.
For many years I continued to ski, but finally accepted that the passing years made it increasingly difficult, and increasingly risky.
Finally I transferred my attention to aviation, qualified as a microlight pilot, and began a serious flirtation with the sky.
I purchased, and attempted to fly, a gyroplane. I had wanted to do that since I was thirteen, when I had sought to build a gyro-glider. My father was smart enough to forbid me doing so. Just as well - I would probably have killed myself, as many did in those hand crafted machines almost seventy years ago.
Then I bought the first of my factory-built, all-metal planes, built a hangar for its storage, and spent hundreds of happy hours flying around New Zealand with my wife. Finally I swapped that for a later model of the same marque, equipped with 'glass cockpit', autopilot and oxygen - a real go-anywhere machine.
Unfortunately I have had a stroke, which, though very minor, prevents me carrying any passenger who might be endangered were I to collapse over the controls. So now my passengers must be fellow pilots, able to take over control in an emergency. The law is very understanding - I may kill myself, but must not put anyone else at risk. Quite right, too!
So, almost ten years after starting to fly, I now have over twelve hundred air hours under my belt, and still love every second in the air.
The cancer is a long way behind me, but I remember every second of that journey as if it were yesterday.
And, by the way, I have regained my strength and my saliva, almost as good as they ever were.
But I haven't been able to throw off the Juvenile Tastes in wine. Probably never will.
Copyright © Peter L Collins, 2019.