2 Chemo Limbo — Impact

2 Chemo Limbo — Impact

In late 1968, Michael Geliot came to my college to direct the final production for the third-year students, one of whom was me. He had just resigned as artistic director of the Traverse Theatre Company in Edinburgh and was about to take over an equivalent position at the Welsh National Opera. He already had a reputation for being an exciting, though highly controversial, director.

            When we gathered with him for the first session, there were thirty of us; three sessions later there were merely eleven. He began by asking us all to tell him one thing that we would not be prepared to do on stage. I was one of the last to speak. Everyone before me had mentioned something, but I said that I could think of nothing. Michael paused and looked hard at me, before passing on to the next student. He was obviously not going to let me get away with that lightly and throughout the rehearsal period he drove me into new terrain. And I loved it.

            Reflecting back over my life I believe that my underlying attitude has remained the same. I have always tried to be open to new experience, but facing the challenges of a theatre director is not nearly so difficult as meeting those that life throws in your way and I am conscious of how many times I have fallen short. Nonetheless, it has been one of the guiding principles of my life and one to which I still hold. It keeps me alive and vital; it helps me not to settle down into habitual patterns; it enables me to keep Going Forth[1].

            Chemotherapy was certainly going to be a new experience that I would not have chosen had I been ready to die, but if I wanted to live I could not afford to spurn it. If I truly wanted to benefit from it I must welcome it, just as I had welcomed the cancer.

            I had no illusions; I knew that it would be a big challenge. It is difficult to imagine that anybody could enjoy its relentless rigour, but it is not my intention to give a blow by blow account of all the minor trials it threw in my face; that would make for tiresome writing and tedious reading. Nonetheless, in its unique way, I believe that the whole process has been of significant spiritual benefit to me. It is difficult to pinpoint anything in particular as it is more to do with the overall impact of what, for me, was a kind of bardo[2] — a dream-like state between one phase of life and the next — as I hope to communicate.

First infusion

Just before I was about to start chemo I was booked for a photo-shoot in Birmingham and had been asked not to shave for the week before. It was not just welcome work; it was an opportunity to have evidence that I did once have long hair and that my beard could actually grow.

            The following week I received my first dose of docetaxel, the chemotherapy drug I had been prescribed. However, when I had arrived at the hospital I was told that my medication had not yet been prepared and that there would be a delay. I was finally called into the ward four hours later. I later learned that such delays were not uncommon and that tensions between the nursing staff and ‘pharmacy’ were part of life on the ward.

            A cannula was inserted into a vein on the back of my hand which was then hooked up to a saline drip to flush my vein before and after the docetaxel, the whole procedure taking just under two hours. I was monitored by a nurse very closely for the first few minutes in case there might be any adverse reaction to the drug; fortunately, there was none.

            The ward was divided into several rooms with seven or eight chairs in each. A quiet, but friendly atmosphere pervaded the whole place. One of my fellow patients was particularly communicative.

            “The trouble with friends and relatives is they’re so gloomy,” he lamented and then continued in a doleful voice of excessive solicitude, “’How are you, dear? Are y’ alright?’” He shrugged and glanced upwards as if to ask how do you respond to such inordinate concern? “If you’re not careful it can drag you down. But I’m not gloomy, I’m hopeful. Where there’s life, there’s hope… In any case, I don’t believe death is the end. I think we come back.”

            “Me too,” I chipped in.

            “Do you?”

            “Sure, I’m a Buddhist.

            “Oh, you are, are you? …Have you ever thought what you’d like to come back as… have you?”, he continued, scrutinising me. “I have. I wanna come back as me.”

            “Don’t worry about it, mate… you probably will!”

Impact

Because of the pharmaceutical delay, I left the hospital too late to attend the team meeting before the Monday night class that I taught. I was due to give a talk that evening at the conclusion of a six-week course on Buddhism. As I did not know how many more such opportunities might come my way, I was particularly keen to speak; but more than that, I felt on fire — not with chemo, but with inspiration. I was in ‘the crucial situation’ — one in which I felt I had to grow or die, perhaps even literally, but certainly metaphorically — and I wanted to take full advantage of that. By the time I began speaking, I was beginning to feel the effects of the chemo: fatigue in my legs and a slight headiness. Nonetheless, my words flowed freely and clearly.

            Later that night, I suffered interminable hiccups and couldn’t sleep. Consequently, I spent much of the night searching on the internet for a cure. After several false starts I tried a remedy that involved sticking fingers in both my ears, while simultaneously holding my nostrils then breathing out before sipping water from a glass.

            Though it sounds absurd and probably looked even worse, because I was feeling desperate, I successfully managed this strange contortion and found an unlikely cure for my hiccups. Thank goodness nobody was watching me. I am already considered to be far more eccentric than I care for.

            Forty-eight hours later the full force of the chemo began to plague and torment me. It was one of the worst nights I had under its influence: chronic toothache, sore gums, a mouth ulcer — and I forget what else — were just the backdrop to recurrent gastric reflux, which by 4am was so severe I called the chemo helpline.

            When asked by the nurse if I had chest pain, naturally I said yes, which put an end to our conversation. “Call an emergency ambulance immediately”, she said. I insisted that it had nothing to do with my heart, but she kept repeating, “Call an ambulance now!”

            I reluctantly gave way and woke up Alan, one of my community members, to ask him to let in the ambulance crew. My call was made a priority so that by the time he reached the front door, the paramedics were waiting — a short, plump rather jolly woman and her taller, leaner, male side-kick.

           I was greeted like a long-lost friend as Alan showed them into my room and they set to work and took charge of me with a will, sticking a variety of medical implements in my ear, in my mouth, on my finger and on my chest. Shortly afterwards, my phone rang. “DID YOU CALL THAT AMBULANCE?” demanded the anxious-sounding chemo nurse.

            My blood sugar was very low. “Here, swallow this.” I sucked a sweet sticky substance from a tube as eagerly as an insatiable infant at its mother’s breast and immediately I felt better. The side-kick was impressed as I had sucked the tube dry — a rare occurrence, apparently. “Good, that’s me sorted”, I thought. But no; further tests were necessary in the ambulance. Damn it.

            As we were about to leave the community, a figure emerged from the bathroom. “Oooh another one!” chortled the paramedic as she fixed a startled male face with her eyes. (She’d obviously never been inside a men’s community before and seemed genuinely thrilled.)

            To my dismay, after several minutes in the ambulance, my new-found friends were dissatisfied with their tests and decided to speed me off to hospital before I had had a chance to let Alan know.

            “Have you had a heart-attack before?”, asked the junior doctor examining me.

            “Have I just had one now?”, I asked, incredulously. She didn’t reply but studied my notes more closely before seemingly confirming my own diagnosis of severe gastric reflux by advising me to double the dose of my normal medication. With that I was discharged — and it was still only 7am.

            It was a fine, crisp winter morning and as there were no buses in sight, I decided to walk back to my community. My legs were weak from the chemo, but I felt there was probably enough power in them to get me back. Walking very slowly, it took me half an hour — twice as long as usual.

            I had plenty to reflect upon in the dazzling lateral light. Could I face another four months of this hell? Several people had warned me that chemo had a cumulative effect, implying that each cycle got tougher. (This was not my actual experience, by the way. As my treatment progressed the side effects tended to settle down, although there was always something new.) If this was the price of life, was I really prepared to pay it? Would it not be better just to let nature take its course and let the tumour kill me?

            When I finally reached the community, I kept my thoughts to myself. It was the only time I doubted that I could endure the impact of chemotherapy. My body seemed to be in total rebellion against it. I had had an extreme induction into the trials of chemo, but gradually all thoughts of discontinuing vanished.

            Some of my friends seemed taken aback — even horrified — to hear that after having disappeared in an ambulance to A&E, I had returned on foot, but I have always considered taxis an extravagance. Having been raised in Middlesbrough just after the Second World War when food, money and fuel were scarce, the importance of frugality had been drummed into me and I have never lost the habit. Besides, enduring minor hardships makes you hardier.

As best I could, I tried to maintain my normal routine — morning meditation, swimming, meeting people, writing, walking around the park and classes in the evening — but this became increasingly difficult. The first casualty was meditation; I did not have the energy anymore.

            It is difficult to describe the mental lethargy known as chemo brain; at its worst, I experienced it as a total mental exhaustion — almost as if I no longer existed, having been finally reduced to the operator of a complicated and ungovernable piece of machinery inside which I was trapped. Fortunately, this extreme did not usually last more than a couple of days, about three days after the latest infusion. At its mildest it was a kind of light-headed, forgetful state of disconnectedness.

            The second casualty was my usual level of physical activity. I managed 800 metres in the pool most days, but that is far short of the 1800 to which I am accustomed. Eventually I had to stop swimming as the chemo exacerbated my recurrent chlorine intolerance.

            Worst of all was walking. Docetaxel is infamous for inducing severe fatigue in the legs (I believe) so that sometimes I could not walk more than a few hundred metres in a day. One day I found myself stranded half way between the local park and my community (approximately 500 metres). My legs would not move and I was forced to rest repeatedly so that I could progress by short stages. It took me so long that I was seriously concerned that I might not make it back.

            A few days later, having walked just a few hundred metres for my first appointment, I told my acupuncturist that I might have to get a taxi back.

            “Don’t be absurd; of course you will walk back”, is not what Diana said, but it’s what the sparkle in her eye accompanying her actual words communicated. And I did walk back — with a spring in my step, but with a warning that it would only be a temporary fix. Still, so far as I was concerned she had performed a miracle. My twice weekly sessions with her, or occasionally her colleague Andrea, were a blessing which greatly helped to relieve the more severe chemo side effects and buoy up my energy.

            Being hampered by my legs shifted my perspective on life yet again. I could only walk very slowly and it took several attempts during the first few weeks to get the pace right. But it was not just me that slowed down; the world slowed down with me. I saw things as an enfeebled old man; familiar things took on a different hue; once more I was seeing the world afresh.

One morning I gave a slight tug at my hair and a handful came out. It was still clinging to my scalp by its rotting roots, but only just. I tried a second and a third time and more came off. It was clear that if I continued my head would be painlessly stripped bare within hours and so I called in my barber (a bright and breezy young community member) who clipped it all off in a few minutes. (With unwarranted zest, I thought.)

            “You look so much better! It really suits you.”

            “Huh,” I snorted, unappreciatively — all the more so as I later discovered that he seemed to have triggered a reprise which spread rapidly around the Buddhist centre where I teach.

            Two and a half years of continuous growth was then gathered and dumped in our bathroom bin, where it sat on top of the other detritus like an abandoned wig. And I walked away, a born-again skinhead; my elf-like ears, shorn of their cover, making me look more mischievous than ever.

            If only my nails had come off so painlessly. First to go was my right thumbnail after I had caught it on a piece of cardboard. But it only partially lifted off which made it much worse, causing me further discomfort. Looking at the rest of my nails it was clear that they were all going to come off eventually. It was the natural consequence of the neuropathy affecting my fingertips and toes and which made it so difficult to fasten buttons or press the keys of digital locks; my fingertips were very tender.

           Watching my nails slowly rot was a kind of contemplation of decay and regeneration, a metaphor for death and rebirth. It put me in mind of the traditional Buddhist meditation on the ten stages of the decomposition of a corpse, except that, here was that same process affecting a live body: me and mine; I was a process of living decay.

            To persevere through so many minor trials, while simultaneously retaining a positive outlook, requires a lot of support that many people lack, but I was very fortunate. My eleven fellow community members gave me all the help I needed without reserve — not just free haircuts. I was relieved of all chores and if there was anything I needed it was promptly provided. I was even chided for doing things for myself that others were only too happy to do for me.

            I have never received such continuous kindness in my life — not just from my community, but from many associated with the Buddhist centre at which I teach. Whatever rigours I might have faced they certainly helped me to maintain my generally buoyant mood and I was very grateful for all the cards, messages, flowers and small gifts I received.

Two of my friends had come with me to the hospital for my first round of chemo. Another accompanied me for the second as she also did for the third. Thereafter I preferred to go alone as there really was no objective need for anyone to be with me. This is no reflection on my friends, or on their kindness and concern (which is deeply appreciated), but somehow, I was able to relax more in the anonymity of the ward.

            Perhaps this is why the idea of dying alone in a remote place has such a strong appeal for me. Should I ever feel death calling (I mean within a matter of days or hours, not months or weeks) I suspect solitude would enable me to relax more into it and, assuming I was not bed-ridden or incapacitated in some other way, I would probably seek it.

            Solitude has been such an important aspect of my life — like an old friend from childhood. I have done many solitary retreats of never less than one month’s duration, the longest being nine months. Perhaps the circumstances of my early life had predisposed me towards seclusion. I was raised without siblings and my school career protracted itself through eight different schools. Consequently, throughout my youth, I lost my new friends almost as soon as I had made them which, in time, rendered me an inadvertent outsider and left me extensively alone.

Second infusion 

When I arrived at the hospital for my second infusion, a young Spanish nurse, took charge of me and cannulated me. Shortly afterwards, a fellow patient arrived in a very sorry state. He’d been up all night with diarrhoea. As he is rather stout and elderly, the nurse helped him on to his chair and then had the unenviable task of telling him that his medication would be delayed by an hour. It was more than the poor man could bear and he exploded.

            She did her best to calm him down, but he had got himself into a foul mood. I quietly watched the whole scene. Finally, she freed herself from him and came over to check my drip. I whispered, “Well done; such kindness, such patience! I have the greatest admiration for your profession.” She squeezed my arm in silent appreciation.

            I was sorry that she had had to endure this, but so was her patient, once he had had time to reflect, and he apologised profusely. Throughout the whole of my treatment I never saw any of the nurses lose their patience with any of their patients.

            I left the hospital at lunchtime, which left me with plenty of time to reflect on what I might say to my class that evening. The talk I gave proved to be perhaps one of the most popular I had ever given.

Although I had not been told, the second dose of docetaxel was considerably higher than the first — a jump from 108 to 148mg — not that I minded. The initial lower dose was precautionary, just in case there were any adverse reactions, but thereafter I received the full dose which was calculated according to my body weight.

            This sharp increase caught me unawares and it was then that I found it difficult to walk as my fatigue level took a quantum leap. Suddenly my body felt very old and I shuffled along streets and corridors like a nonagenarian, as if I had been given a preview of old age. This extreme phase only lasted for three or four days during each cycle, but it was seriously debilitating and a great test of my patience. I could go nowhere; I was housebound.

            I spent hours on end lying down alone in my room, drifting in an out of a doze during this stage of the cycle, occasionally reflecting. Even when I was brighter I often lacked the concentration to read or to write due to chemo brain and frequently eased my mind by listening to music. The Romantics, principally Beethoven, Liszt and especially Schubert, matched my mood of the moment.

            One of the great ironies of chemotherapy is that although it is a treatment, I experienced it more as a chronic illness. Thus far, the disease afflicting me, serious though it was, had barely troubled me. It had caused me no direct pain or discomfort, although in due time without treatment it would do so before finally killing me. Yet the treatment itself reduced me to an invalid.

            All my life I have been an embodiment of health and vigour, but now I was reduced to this so quickly, so easily. I was beginning to appreciate what Siddhartha (who became the Buddha) had seen when he encountered old age, sickness and death and for the first time began to see them truly, understanding that, young though he was, he too would one day be afflicted by them.

            One morning I woke up feeling uncharacteristically grouchy as my mind wandered in and out of petty grievances. They were so petty I am embarrassed to recount them. This dragged on for over an hour until I caught myself. What was going on? Such thoughts had become alien to me; why had they returned unbidden? There must be some deeper significance; and so there was.

            For three weeks, I had not had the strength to walk to my local park and I missed it badly; missed the contact with nature. I had to get there somehow for the sake of my mental and spiritual health and I determined to do so.

            I had been warned by a chemotherapy nurse that I must not try and push through the fatigue in the way an athlete might when training or competing, because this was of a different order. I decided, therefore, to walk to the park in short stages, no matter how long it took, resting whenever my legs felt as if they were about to seize up.

            When I finally reached the park, my spirits soared as a surge of energy carried me forward amongst the Sunday crowd, into the warmth of the sun, down the avenue of trees, beneath their shade, across to the wooden bridge to gaze into the lake and laugh at the quarrelling coots.

The consultant and her registrar

Every three weeks, I met with the consultant, or her registrar, to be cleared for the next infusion, which would follow shortly afterwards.

            “To my embarrassment, we have not met before,” the consultant said as she greeted me with a warm smile a few days before my second round, “but I know a lot about you.”

            “Then you have the advantage over me,” I responded jovially.

            “Let me introduce you to my new registrar,” she continued. It was only then that I noticed the silently attentive young woman sitting beside her. I sensed that most of my future consultations would be with her and I knew at once that we would get on well.

            Among other things, I was expected to consult them about supplements. The general advice was not to take any. However, Diana, my acupuncturist, had been encouraging me to take several.  Chemo was my priority and I was unwilling to compromise that in any way, but I was happy to run her suggestions past the consultant.

            “A few whacky questions for you,” I said.

            “Fire away.”

            “Frankincense oil rubbed into the roof of the mouth.”

            She laughed. “Why?”

            “Supposed to destroy cancer cells.”

            “There’s no scientific evidence,” she insisted. (Diana asserts that there is plenty. I know nothing, but I’m game for anything — even broccoli sprouts.) “It won’t harm you, but it won’t do any good... I can’t imagine what it would taste like.” (And she clearly had no desire to find out.) “It won’t get into the blood stream, you know... Is it expensive?”  I shook my head.

             “Tincture of wild lettuce?” She looked puzzled. “To calm restless legs”, I explained, feeling myself on firmer ground. A shrug was her answer.

            “Magnesium oil for the same purpose.”

            “Well, yes. I have heard that does work”

We then moved on to the routine business as she asked had I had any nausea, vomiting, breathlessness, neuropathy and I forget what else.

Our next meeting was just before my fourth infusion. Although I was only halfway through the chemo it was now necessary to start organising the radiotherapy. She explained that the intention was to give me the maximum dose of 39 sessions spread over almost eight weeks. Finally, she said encouragingly, the warmth of her smile once more breaking through, “You are dealing excellently well with the chemo.”

            But however well I might be coping with it, something was wrong — not with my body, but with my mind. I knew and recognised the problem, but did not know how to fix it.