3 Chemo Sostenuto

3 Chemo Sostenuto

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Several years ago, one of my friends had been diagnosed with terminal cancer. He was given eighteen months to live, but before he died he wanted to return to England to say goodbye to all his old friends, me included. When we met, I felt immediately that something had changed. He was animated by an urgency which I had never seen in him before; all that mattered to him now was his practice of Buddhism.

            Eighteen months later he was still alive when I travelled to Boston to interview a Vietnamese Buddhist monk, for a book I had hoped to write. My friend met me at Logan Airport and drove me to his home. The moment we met I sensed that there had been another change, but I said nothing. I just watched him as he drove along. Finally, I broke the silence, “What happened?”

            He laughed and said, “I could see it was on your mind.” He shrugged, sighed and simply said, “You adjust; become habituated. You forget.” Seven months later he was dead, but, before he died, he had remembered again.

            I did not want to adjust and forget, but I sensed it happening. All the signs were there; I had forgotten the cancer and my mind had become preoccupied with trivia. Certainly, the ulcerated skin on the most delicate part of my male anatomy was unpleasant, but it was hardly life-threatening. The large hardened swelling just below my navel was indeed tender, but was localised and clearly a reaction to my latest hormone injection. Yes, the scarlet vein on my wrist was unsightly, but it was not even painful, so why the anxiety? (It was a vein damaged by a tiny amount of chemo leaking at the beginning of an infusion, I later learned from my consultant.)

            If I was to get anxious about anything, should it not be the cancer? Admittedly I checked the anxiety as soon as I was aware of it, never allowing it to take me over, but I did not know how to counter the underlying complacency of which I deemed it to be symptomatic.

            Perhaps I expected too much of myself. The period and process of diagnosis had induced a state of heightened awareness that I had endeavoured to capitalise upon, but it was difficult to sustain over an extended period. It’s analogous to bereavement. The immediate pain of grief fades with time and is eventually forgotten. I knew I had lost the edge that had driven me dramatically forward. Constant reflection no longer seemed to bite in the same way, but then occasionally something would briefly jolt me back to reality, as happened on my fourth session on the chemo ward.

Fourth infusion

When I arrived, I was taken straight to a treatment room as I had one of the first appointments. I was then told that there would be a delay as the computer system was down for the fourth successive day. However, the nurses wanted to get everything in place so that, if the system revived, they could move things along swiftly. It was 9.30 in the morning and a cannula was once more inserted into one of my veins where it remained for many hours, as computers remained unresponsive.

            By early afternoon the nurses were getting restless. They had had nothing to do all day and nobody knew whether any of us would be treated. Later patients were being sent home; among them were many unhappy people, some of whom had become angry with the staff.

             I had no more reading material, having slowly worked my way once more through Shakespeare’s The Winter’s Tale. I had seen Declan Donellan’s production of the play a few nights before and had been irritated by his imposition of fashionable ideology upon the text. Perhaps these ruminations were precursory to what happened next.

             I became anxious. Will I get my treatment? What will be the consequences if I don’t? A succession of similar thoughts rumbled through my mind as I slowly paced up and down the corridor until I caught myself and felt ashamed.

             Samsara[1] always goes wrong! This had been my mantra for decades, often saving my mental state in testing circumstances. Why had I forgotten it at the very time I most needed it? How foolish! I demanded of myself, “What’s so special about you? Why should you be treated ahead of others, perhaps at their expense? In the widest perspective, does it really matter whether you are treated at all?” …And then, remembering Shantideva (a great Indian Buddhist master and poet), I reflected, “Let others go before me, ‘Let me be medicine for the sick’…”

             I returned to the treatment room and sat on my chair as a deep tranquillity displaced the dark thoughts that had troubled me, leaving me perfectly happy to accept whatever the outcome might be and wishing the best for all — especially for the staff who were having to deal with a trying situation, not of their own making, sometimes without the sympathy and patience they deserved.

             I chatted with the nurses who were frustrated because they could not help their patients. Because ‘pharmacy’ could not access computer records, they would not release any medication in the absence of a handwritten prescription from the prescribing doctor. Those doctors who were present were all in clinic.

             By mid-afternoon we knew that some of us would be treated, but we did not know whom. It was not until 5pm that I was told that I was one of the lucky few and that my medication was being prepared. I was the second-last patient out of a very small number to receive chemotherapy that day.

             Just as I was about to leave the ward, the Filipino nurse who had treated me smiled and said, “Thank you for being so calm.” I finally left the hospital ten hours after I arrived, well past 7pm.

             This incident had jolted my memory again; it had helped me to realign my emotional attitude, but it took something of great subtlety to reinvigorate my momentum.

 Ida

The day before my third infusion, I had celebrated my sixty-ninth birthday for which one of my young friends had given me a dvd of Pawel Pawlikowski’s film, Ida. Several weeks later we watched it together. It is one of the most beautiful films I have ever seen and I can think of no other that has affected me so positively apart from Tarkovsky’s Stalker. For weeks on end my mind had been preoccupied with old age (fatigue), sickness (chemo) and death. But Ida highlighted the vision of Siddhartha’s[2] fourth sight of the homeless wanderer in a surprising and uplifting way.

             The film is set in Poland perhaps twenty years after the end of the Second World War. Anna/Ida is a novice Catholic nun whose Jewish origins are suddenly revealed to her by her last surviving relative. Her new-found identity precipitates a sequence of events that have a profound impact upon her, but she meets each new challenge head on and rises above them all.

             For me, Ida embodied the spirit of a truth seeker and I could see many parallels in the experience of the eponymous heroine with my own, enabling me to readily identify with her. I was reminded quite dramatically of my own higher purpose, which perhaps I had been in danger of forgetting. It is so easy to become self-preoccupied when you are confronted day after day by a succession of minor ailments such as those thrown up by chemotherapy. Although I had vigorously resisted any tendency in that direction, I needed Ida, at the time that I watched it, to stiffen my resolve. But the film did more than that; it renewed, perhaps deepened, my own inspiration.

Radio tuition

Tragedy and comedy are the stuff of life and after the sublime tragedy of Ida I was next thrust into the comedy of a radiotherapy seminar, which certainly had its ridiculous moments. There were about twenty patients present, some with their partners. Everyone except me had undergone prostatectomy and they would only receive four weeks of radiotherapy — half my dose. I was the only chemo patient.

            A urology nurse introduced the seminar which would explore four principal topics. First to speak was a radiographer who emphasised that we must all start training now as the bladder needed to be full at the time of treatment. “It’s no use coming if you can only hold 200 millilitres; that won’t be enough and we won’t be able to treat you.” We had to aim at retaining 350, which, incidentally, is not a problem for me.

             After the radiographer, the physio took over and demonstrated how to identify our bladder muscles together with the exercises necessary to strengthen them. Discourses on the general importance of exercise and good diet, neither of which taught me anything I didn’t already know, followed.

             I was beginning to yawn until at last we arrived at the entertainment: erectile dysfunction.

            Apparently, James was to have been present to explain and demonstrate a vital piece of equipment but, unfortunately, he had not been able to come. The urology nurse looked distinctly uncomfortable as she explained this to us. As his reluctant stand-in, she was caught between a rock and a hard place and my flagging interest was now suddenly aroused.

            “Well… the important thing to remember is… use it or lose it, because… well, if you don’t there is the danger of permanent loss of function… and it may shrink. After all it really is only a muscle and, like any muscle, lack of exercise will result in wastage.”

             I could easily imagine the alarm hidden behind the impenetrable faces of many of the men present, some of whom, I suspect, were suffering from involuntary lack of exercise of a possibly shrinking muscle.

             Nurse continued at a rapid pace perhaps in an attempt to get the ordeal over as swiftly as possible, “Fortunately, we can help you… I mean, there are things we can give you. James should have been here to demonstrate how to use the pump… but we don’t actually have a pump here at the moment so… well, if you do have any questions, do ask.” (Clearly, Nurse was not a position to demonstrate anything. I wonder how James would have gone about it.)

             There was an uneasy silence until one brave soul spoke up.

             “I have a question.” Nurse smiled encouragingly, if somewhat uncertainly. “I’ve tried the pump, but it didn’t work.” Nurse was looking increasingly unsure of herself and, obviously at a loss for words, glanced desperately in the direction of her male colleagues. The physio gallantly sprang up.

             “What happened?” he demanded firmly, yet sympathetically.

             “Well, I read the instructions and… had a go, but it was really uncomfortable.”

             “Ah, yes. You see, it’s really important that you get a vacuum. It draws the blood into the… muscle. You just need to persist. Talk to me afterwards. Most men manage to get stimulated eventually. Any more questions?” No, just blank looks — except I had one for Nurse, which I was sure would be of no interest to anyone else and which I sincerely hoped would cause her no further embarrassment.

             When the session had finished, I approached her and asked, “Apart from shrinkage and loss of function are there any other medical concerns about…  not exercising?”

             “Oh no, you don’t have to,” and then with an inquisitive look, “but most men seem to want to.” I explained that I was a Buddhist and that for a period of twelve years, when I was much younger, I didn’t. And there had been no shrinkage, I might have added, but perhaps that might have pushed my credibility a little too far.

             I approached the physio as I had an appointment with him.

             “What’s the problem.”

             “I need help in managing fatigue.”

             “That’s unusual.”

             “I thought it was very common.”

             “Not really.” He quickly scrutinised me. “How do you exercise?”, he asked somewhat suspiciously, looking at me like a detective about to trap a criminal. I told the truth and he laughed. “I see the problem. Most people don’t even notice the fatigue because they don’t exercise very much, if at all

Dancing the night away

Chemotherapy seems to exacerbate existing weaknesses and conditions. Restless legs syndrome (RLS), involuntary movement of the legs — especially at night — was one of mine. The problem is that it can severely interrupt sleep. For me, RLS had previously tended to be mild and occasional; under chemo it became chronic and at times almost constant. Having mentioned this to Diana, during one acupuncture session she concentrated specifically on treating it.

            I was lying on the treatment table with needles in my legs and elsewhere when suddenly my legs began to go and they would not stop. Looking down at them, although they were clearly not up for the cancan they seemed to be attempting an Irish jig. I called out to Diana who was in an adjacent room and she returned immediately and worked hard to calm them down.

            “I’ve never seen anything like it,” she said, with a hint of suppressed amusement in her expression; me neither —  it was the worst it had ever been. “Ask the oncologist if there’s anything they can give you,” Diana suggested.

“You need quinine sulphate,” said the registrar the following day, “but you are on so many drugs at the moment, I’m reluctant to prescribe anymore. Try Indian tonic water.” Of course! I mentioned that my swimming coach used to recommend drinking it just before a training session to guard against cramps, as it contains quinine.

            “Oh, I used to love swimming,” she said. I noticed the fitness tracker on her wrist and asked her about it. “My husband bought it for me,” she explained.

             “What do you do for fitness now?”

            “Nothing”, she replied. “I know I ought to.”

            “Like so many of my medical friends. …You would like to?”

            “Oh yes, but it’s so difficult getting started.”

            “Just go to the pool!”

Radio consent

A few weeks later, she began our consultation with a long preamble about radiotherapy explaining likely side effects and post treatment problems. This was necessary before I could sign the consent form.

            “You realise that you will become infertile?”

            “I’m almost 70,” I replied, wearily bracing myself for the erection question.

            “Yes, but you see, I met with a man in his eighties a few months ago, omitted to tell him; when he found out later he was deeply upset.”

            “You’re kidding!”

            “Unfortunately, not.” I shook my head in disbelief and she smiled at me as if to say, “I’m with you on that.”

             “…And you will also become impotent.” No surprise. Surreal, though, to hear these words in my seventieth year, enunciated in such a matter-of-fact way, by this beautiful young woman.

             I gave my usual response then signed away my genital prowess for this life without a twinge of regret.

             And I can’t be bothered with pumps. I know that they bring solace to many men — and I am sincerely glad for them — but for me, at my age? The very thought amuses me and prompts inner laughter which occasionally breaks the sound barrier into irrepressible mirth.

Cezanne to the rescue

A mere moment of inspiration can sustain you through the most difficult times. Often, they come unbidden, but you may also seek them, as I did shortly after signing that document seemingly so fatal to my manly pride. I had gone to the Courtauld Gallery where I spent most of my time in a room in which a large painting by Manet hangs amid several by Cezanne. I absorbed myself in the Cezannes — the same paintings I had first enjoyed and learned to love fifty years ago, when I was a student; but now I saw them afresh.

             I ignored the Manet until finally, stepping back to look at the whole wall, I could do so no longer. It is perhaps one of the best-known paintings in the collection, but its sensuous portrayal of a woman behind a bar at the Folies Bergere seemed so crude and out of place in Cezanne’s company that I found it painful to look at.

             Only then did I begin to see why some regard Cezanne to have been the greatest painter of modern times. His paintings seemed bursting with a hidden life that sprang off the wall into my mind and expanded consciousness. Perhaps only my current precarious state of health could have induced such heightened perception and gift me yet another precious moment.

Cyberattack

The cyberattack struck on the very day I consented to radiotherapy, just a few days before my fifth infusion. The hospital was severely affected and so consequently, again, there was doubt about whether I would get my treatment on time. There were confusing messages in the media and I received seemingly contradictory information from the hospital itself.

            I was told not to take the steroid necessary before an infusion as I could be given it intravenously, should things work out, which they did. I had phoned the chemo ward on the day of my appointment and recognised the voice and accent of the Spanish nurse. She phoned back forty minutes later to confirm that I was on the list of the few to be treated and that I could go in at any time. However, there would be a delay of up to four hours as new blood tests would have to be taken and analysed before we could be given our medication.

            When I reached the treatment room, one patient was already unhappy about the delay on test results which he could not comprehend. New tests were unnecessary in his case, anyway, he explained. “Ask my oncologist,” he demanded of the doctor who was trying to clear us all for treatment, “She’s seen my results and said they were okay.” But she was not answering her phone.

            The doctor came over to me, “Have you taken your steroids?”

            “No,” I replied. He frowned, but I explained why and later a Chinese nurse administered the usual rather high dose by the drip. However, I still had to take an additional half dose orally.

            “You realise you won’t sleep tonight,” the nurse said. I laughed.

            “I can’t even sleep with the normal dose!”

            Meanwhile, from the opposite side of the room came the same concerned voice. “I can’t wait four hours for those results. I’ve got an appointment this afternoon.” Several nurses, the ward sister included, explained that it was beyond their control, but the more they reasoned with him the angrier he became, insisting at frequent intervals that they should check for his results. After two and a half hours he got them and I was perhaps the unwitting beneficiary of this pressure as my results came through at the same time. At last he calmed down as a nurse administered his medication.

             And then he felt ashamed, offered copious apologies and excused himself: “I can’t help it; it’s my nature.”

            The nurse gave him his supplementary medication for the coming weeks. “Do you need any anti-sickness pills,” she asked, offering him some.

            “No, I don’t get sickness. Keep ‘em. Save the NHS fifty-five million quid.” She laughed, but a little later there was another problem. He was short, by two pills, of another medication that he really did need. At once he was anxious and very quickly he was demanding the missing pills. Despite being told several times that they would be provided before he left the hospital, he insisted that they get them immediately, working himself into a terrible passion as he did so. Consequently, he ended up with twice the amount of medication he needed.

            This sobered him and once more he was overcome with remorse when he realised what he had done. Again, he said, “I’m sorry, I just can’t help it. I’ve always been like this. It’s my nature.”

            “I disagree,” I said, from the opposite side of the room, “you can change, but you’ve got to want to do so.” As he had just been released from his drip, he came over to me.

            “How is that possible?”, he asked.

            “It’s what I’ve been trying to do all my life,” I replied.

            “Oh yeah, I remember… You’re a Muslim, aren’t you?”

            “Buddhist,” I said as a smile escaped me; we then talked further as his mood softened.

            “I greatly admire what you’ve done, but I made all the wrong choices in life.” His last few words succinctly summarising not just the tragedy of his own life, but of human existence itself. Very few see, feel or grope their way to the right choices; fewer still make them.

            A few minutes later, after he had left, the nurses gathered together talking in subdued tones for the first time since his outburst had displaced the natural hubbub of the room with a wary silence. By this time, I had been discharged and so I went over to them. “You do realise that you are much appreciated here, don’t you?”

            They smiled at my words, but then the Chinese nurse asked me “Why didn’t you speak earlier?” Initially, I was taken aback and I cannot recall whether or not I eventually did say what I certainly thought later.

            Although she understandably found her patient difficult, I felt that she had dealt with him admirably well; but more importantly I had been waiting for the right moment to speak. I had not wanted to risk making matters worse and so had only spoken when I could see he could hear what I had to say.

When I returned home, one of my young community members was in the Kitchen. “I got my fifth chemo!”, I said, delighted at my good fortune, so grateful to have been treated. He laughed saying he could think of nobody else who would be so pleased about that. I could understand, yet I also wondered, why.

            Is chemo not a blessing in the guise of an illness? At the very least, is it not a trial of human resources? How can you be sure of your ‘insight’ or tranquillity if life is relatively easy? Is it possible to be confident in your experience if you cannot withstand and rise above mere adversity? Finally, can you truly know yourself if you are never severely tested? I had been tried and tested and my weaknesses had been exposed. Should I not therefore be pleased to have been given this wonderful opportunity and to welcome it, as I try to do, with my customary enthusiasm and optimism?

Riding the fifth

The nurse had been right; I could not sleep that night. Dexamethasone had catapulted my mind into the stratosphere. I was in and out of bed for half the night until I could no longer be bothered to get back into it again. I did not feel a hint of tiredness until the following evening.

            When my body and mind were finally reunited, I noticed something very strange. The horrible metallic taste that chemo leaves in your mouth had gone a stage further. I had completely lost my sense of taste and my appetite had disappeared with it. It was with great difficulty that I motivated myself to eat, as it was such an unpleasant experience. Eating food that you cannot taste seemed a pointless exercise. Why would you eat if it gave you no pleasure? I had never realised just how much my sense of taste drove my appetite. My empty stomach was insufficient in itself to move me to eat. Fortunately, my loss was fleeting; after a couple of days my taste returned and I could eat happily once more.

            However, a week later things were seemingly taking a bigger downturn. The strength in my legs was not returning as I had come to expect and other chemo side effects were much more pronounced and painful. Most alarming of all, I was beginning to weary of the whole process of chemotherapy. I had been immersed in it now for over three months. Was my spirit about to break, finally?

             I confessed my weariness to a few friends who thought this trough in my spirits perfectly understandable. Perhaps it was, but I was still dissatisfied with myself and became convinced that there must be some unacknowledged factor at work. Mulling it over, I realised that I had had no acupuncture for almost two weeks, as both Diana and Andrea were away. Luckily, I had an appointment with Andrea the following day and she restored the energy to my legs. Now I had no doubt just how much I owed to the dedication of my two most kind and generous acupuncturists.

Two weeks into my fifth cycle I was due to speak at the Buddhist centre where I teach, but the week before I had been plagued by chronic sleeplessness, caused by RLS which in turn had been exacerbated by chemotherapy. I felt exhausted.

            Just before I was due to speak, one of my friends looked at me concernedly and asked, “Are you sure you can do this?”

            “Of course. I just need to get started, but it won’t be one of my best.” My topic was the chapter from one of the most popular Buddhist texts in the Chinese tradition in which a renowned, old Buddhist practitioner is asked about his sickness. How ironical; I had not chosen this text, but, perhaps inevitably, I spent a good deal of time talking about my own illness, placing it firmly in a Buddhist context.

The talk was greatly appreciated — perhaps more for effort than content — and there was so much applause at the end I could have forgotten myself and stood up for a bow. My theatre conditioning runs deep. I had been determined to speak even if I had had to do so lying on a couch like the character in the text. The idea that ‘the show must go on’, regardless of personal circumstances, was still deeply embedded in theatre culture when I was working. Perhaps for this reason, I cannot recall ever having excused myself from giving a talk through ill health, though I have often stood in for others.

As chemotherapy proceeded, I found myself increasingly prone to laughter — the soft, chuckling variety not the violent, belly-shaking kind — and I wondered why. Life seemed to be becoming more and more amusing. Why had I never noticed before that life itself is such a comedy? Why had it taken me so long to finally understand the huge cosmic joke in which we all participate?

             I found myself laughing at small things: human foibles — both my own and those of others and even those of animals. The squirrel at prayer while greedily munching its food could divert me as much as the gulls and geese battling for bits of bread cast into the lake of my local park.

            Perhaps inevitably, given my ill-health, the absurdity and vanity of worldly endeavour struck me with greater force. My laughter was never tinged with contempt, but was often accompanied by poignancy. How sad that things should be the way that they are; how unfortunate that so often we fail to see beyond them. There is no comedy without tragedy.

             Probably because of the cancer, I feel the tragedy and comedy of my own life with increasing acuity; the one reminds me of the seriousness of the human predicament, the other lightens its burden; both are tinged with poignancy wherein lies their transcendent beauty and both can give rise to wisdom and compassion when keenly observed.

I was due for an MRI scan later on the same day that I met with the registrar for the routine consultation a few days before my final infusion. “Presumably the scan will show whether or not the chemo has shrunk my tumour.”

            “Oh, it will have done something! Otherwise, why put yourself through all that?” Indeed. The scan would enable the radiotherapy to be precisely targeted.

             There was nothing else to discuss and so, as we had several minutes to spare, I advised her how to establish a regular exercise routine, warning that I would be quizzing her as to whether or not she had succeeded when next we met.

             “Good. That will give me an extra incentive to actually do something.”

             “Perhaps involve your husband too,” I added.

             “Yes!” she responded seemingly delighted at the idea.

When I finally left the hospital, I could not but help wonder what my latest scan would reveal, as, despite my young friend’s optimism, I was aware that chemotherapy does not always work. But it was pointless to speculate and I did not want such thoughts to distract me, so I put it out of my mind. I would find out in due course.