On the Night Side of Life: the Malady Spreads, the End Is Nigh

Representational Image: Edvaed Munch. Self Portrait

Mayank Bhatt

Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.

Illness as Metaphor – Susan Sontag

 

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his will be the last in the series of essays that I have been writing since I was diagnosed with Stage IV pancreatic cancer in mid-2020. My oncologist Dr. Sabrina Allegro, of Toronto’s Humber River Hospital, who has patiently but aggressively fought my cancer, called me on 31 May to inform me that the CT scan results are not at all good and that cancer has now spread to my bones, have affected my ribs, spine, and hips. It continues to grow on my liver.

I asked her how much time I have, and she candidly admitted, “three to six months if the chemo works, or less.”

Earlier, in a report, she said, “Since I last saw Mr. Bhatt, he is progressively getting worse…he is likely nearing the end of his pancreatic cancer journey.”

And so, the inexorable march continues. The CT scan result shows the slow but persistent increase in the size of two tumours on the liver and its gradual spread to the bones. The chemotherapy drugs that have been administered to me since 2020 – Gemcitabine and Abraxane – have stopped giving results.

By February 2022, Dr. Allegro, cleared the path for a new, stronger drug – Folfirinox – she had hesitated to try it earlier because of my kidney problem. My body is resisting the new drug, and Dr. Allegro continues to look for new, better solutions.

She tried Folfiri once, before recommending that we stop the chemo sessions at least till we know the results of the CT scan. On my insistence, she has restarted the chemo but has cautioned me that if it doesn’t work in one cycle of three sessions, she will stop it.

I have accepted the inevitability of the situation, even as I continue to fight and hope that things will turn around. However, there is a growing sense of resignation, not just in me, but among family and friends, as the disease reveals its unshakeable resolve to decimate, devour.

Except for my severe and persistent backache, a deep sense of peace enfolds me. I have stopped reacting to my condition, which includes increasing debilitation, immobility, reluctance to do anything that involves physical exertion, and impatience with everything and everyone.

I can’t claim to be entirely successful, but I am teaching myself to be patient, remain calm, and not react in anger or frustration. Mahrukh, my wife, and Che, my son, are my strength, my support system – both mentally and physically. They, too, seem to inherently understand that this journey is deviating from the path that we had hoped it would stick to. But, more than me, they are determined not to surrender. They continue to pull me up, often metaphorically, by saying the right things, or at times physically, when my body refuses to cooperate.

In March, my rapidly weakening body couldn’t adjust to the new chemotherapy, and after the second session, I had to be hospitalized again at the Humber River Hospital. This time, the visit is exactly a year after I had last been admitted. I’m familiar with this place – the 13th floor, which is where cancer patients are treated. I will die there soon.

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My point is that illness is not a metaphor, and that the most truthful way of regarding illness—and the healthiest way of being ill—is one most purified of, most resistant to, metaphoric thinking. Yet it is hardly possible to take up one’s residence in the kingdom of the ill unprejudiced by the lurid metaphors with which it has been landscaped. It is toward an elucidation of those metaphors, and a liberation from them, that I dedicate this inquiry.

Illness as Metaphor – Susan Sontag

 

Between hope and despair lies the realm of anxiety. It grips your heart with fear and gnaws at your innards to immobilize you. A cancer patient knows it too well. You want to get up from the couch and start working on your laptop, there are a million and a half things to be done, and you are keen to get cracking, knowing well that once you start, your mind will be occupied and the despair over cancer and the repeated, recurring failure of chemotherapy will be pushed in the background, and your thoughts will be hopeful. But you are immobilized with uncertainty. It takes a long, long time to push despair away and bring hope back into your life.

I observed a grim anniversary in early June. It has been two years since I was diagnosed with Stage IV pancreatic cancer. Between 25 May 2020, when I first went to the Emergency at Humber River Hospital and 5 June 2020, when I was discharged from the hospital with a confirmed diagnosis of pancreatic cancer, my world changed – suddenly, totally, irreversibly.

Every cancer patient and their kin think of a cure. But while cure may be available at the initial stages of cancer, it is impossible to think in terms of eradication of cancer as one thinks of eradication of smallpox, tuberculosis, or malaria – the other age-old diseases that were fatal to humans in the previous centuries.

 

As Sidharth Mukherjee observes in The Emperor of All Maladies, “Conceptually, the battle against cancer pushes the idea of technology to its far edge, for the object being intervened upon is our genome. It is unclear whether an intervention that discriminates between malignant and normal growth is even possible. Cancer, the scrappy, fecund, invasive, adaptable twin to our own scrappy, fecund, invasive, adaptable cells and genes, is impossible to disconnect from our bodies. Cancer defines the inherent outer limit of our survival. As our cells divide and our bodies age, and as mutations accumulate inexorably upon mutations, cancer might well be the final terminus in our development as organisms.”

 

But research continues to tame cancer and even if a cure is not possible, science had managed to enhance the lifespan of cancer patients across the spectrum of infinite forms of cancers that inflict us. Early detection and diagnoses, bold and balanced prognosis, and an unending fight battling various forms of cancer at various stages have made cancer in most cases manageable. Stage IV pancreatic cancer doesn’t belong to this category and is considered one of the most lethal cancers known to humankind. That is fate.

 

When we explore our lives and analyze the past, we reach an incontrovertible conclusion that fate, or destiny has played a key role in our lives. Even if we claim to be atheists or agnostics or a firm believer in science over nature, there are some crucial aspects of our lives that science cannot explain. We must perhaps with great reluctance attribute it to destiny, or fate.

 

So, what is fate? What is destiny? Are they the cause of inexplicable occurrences in our lives? Fate is missing being a victim of a mass shooting in a school when many of your classmates are hit by the bullets of a gun wielded by a crazed young man, who is no less than a terrorist. But if that is fate, it can easily be avoided by passing legislation in the USA. Then, are the elected representatives in the USA’s legislature responsible for the fate of hundreds who die in mass massacres by crazed young white males in the USA?

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As long as a particular disease is treated as an evil, invincible predator, not just a disease, most people with cancer will indeed be demoralized by learning what disease they have. The solution is hardly to stop telling cancer patients the truth, but to rectify the conception of the disease, to de-mythicize it.

Illness as Metaphor – Susan Sontag

 

For me, much as I resist accepting the notion of fate and destiny, they mean dying prematurely and leaving behind a family in emotional desolation, and economic destitution. While there is nothing that a cancer patient can do about inevitable death, s/he will always attempt to minimize emotional desolation and economic destitution. Emotional desolation is overcome by a robust approach to an acceptance of the inevitable. It takes a while, and it is never possible (at least immediately) to accept the loss of one’s beloved, but over time, and with healthy coping mechanisms it may be possible. Economic destitution takes a longer time to overcome. It requires planning.

 

In my case, I am gripped with the anxiety of what will happen to Mahrukh and Che after I am gone. The mortgage on the home is not too large but it has been a part of family responsibility, and I have apprehension that Mahrukh and Che might not be able to pay off the balance with ease. To meet this requirement, I have tried to sell our first home in Powai, Mumbai (Bombay), but it hasn’t been easy. It will be many years before my family will attain a semblance of economic stability after I am gone.

 

Is this their fate? If yes, then how are they responsible? I should be responsible because I have created their fate by the possibility (inevitability) of my early death. Similarly, was getting afflicted by pancreatic cancer and detecting it only when it had reached Stage IV my fate or were there other factors involved in the process that science will eventually decipher. These are the imponderables that I ponder when my chemo-afflicted sleeplessness takes over.

 

But let us delve a bit more into economic destitution. I console myself by believing in the adage that when one door is closed, several other doors open. I hope that happens to my family, and many new opportunities open after I am gone.

 

And I often wonder whether life is only about economic wellbeing? It would seem so because, for a healthy lifestyle that one gets accustomed to, the parameters of evaluation are economic. For every other aspect – societal, cultural – it is necessary to be able to have a certain economic stature, which, while carefully build over many years, can easily be destroyed when the main earning member of the family loses her / his life suddenly.

 

Most people don’t have the luxury of leaving behind a fortune that would safeguard their family after they are gone. Their death inevitably leads to a struggle for survival for those who survive the dead. This takes an immense emotional toll and often aggravates economic destitution. Thanks to science, many – not all – cancer patients can at least lay down an economic path that their families may pursue after their departure, which may lessen destitution. It also gives time to family and friends time to gear up to support.

 

Also, as I am nearing the end of my journey, I realize that we give undue importance to money. Yes, it would be utterly naïve to claim that money is not important – hell, it is the most important aspect of our lives, but so are our relationships.

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The earliest literal definition of cancer is a growth, lump, or protuberance, and the disease’s name—from the Greek karkínos and the Latin cancer, both meaning crab—was inspired, according to Galen, by the resemblance of an external tumor’s swollen veins to a crab’s legs; not, as many people think, because a metastatic disease crawls or creeps like a crab… In cancer the main symptoms are thought to be, characteristically, invisible—until the last stage, when it is too late. The disease, often discovered by chance or through a routine medical checkup, can be far advanced without exhibiting any appreciable symptoms.

Illness as Metaphor – Susan Sontag

 

I am gripped by a general sense of sadness, which is not fear or pain of dying, or the pain of leaving behind my loved ones. As I said earlier, by now both my wife and my son have come to terms with the inevitability of my dying soon. The sadness is because I have missed spending time with my loved ones, believing that I would eventually find time to do so, but that time I will never have now.

 

I have missed and will miss spending more time with Che, who is now a grown man, deeply philosophical and yet pragmatic. And I have always wanted to travel with Mahrukh. Both of us love train journeys and we would have loved to take the Paris – Moscow journey, and then go south to Toshkent. The chats with my son and the train rides with my wife will remain unfulfilled.

 

Other things that will remain unfulfilled include writing my second novel on Afghanistan (about which I wrote in my earlier despatch). Hell, I will be lucky if I can complete my linked short stories collection which has been languishing for months and needs just three more stories to be completed.

 

I will miss the mad monsoons of Mumbai (Bombay) when the city is at its most charming. I will miss meeting friends and acquaintances in Bombay, sharing a glass of wine over cheese and crackers, or having lavish lunches and dinners at specialty restaurants that I have known for many years. This will be the last season when I was able to have Alphonso mangoes imported from India, and for which we paid a regal price of $42 per dozen. I will also miss Portuguese custard tarts and sweet bread.

 

I will miss reading and writing. Reading fiction by my friends and nonfiction by my favourite authors, mostly in India, but some even in Canada. I will miss watching movies with Mahrukh both at home and in cinema halls. I will miss sharing my lived experience with her, and narrating trivia about Hindi cinema, as she patiently and quietly listens, only sometimes correcting me, because her knowledge of Hindi cinema trivia is formidable.

 

I was waiting to retire from my job so that I could buy my first pair of casual shoes, the type that folks wear to jog and in the gym. I have never had such shoes, except for a couple of years during my teens (they were called Gola shoes, and were sold at a shop in Bandra, Bombay, to which my cousin Amar introduced me). I will miss wearing dhoti outside, and dressing up in fancy clothes, all bought cheap, of course from sellers of the rejected stock.

 

I will miss a whole bunch of things that I love. But that is what dying is all about. You get one life, you enjoy it as responsibly as you can, and then you die.

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Cancer has stages rather than gaits; it is (eventually) “terminal.” Cancer works slowly, insidiously: the standard euphemism in obituaries is that someone has “died after a long illness.” Every characterization of cancer describes it as slow, and so it was first used metaphorically… Cancer is a disease of middle-class life, a disease associated with affluence, with excess. Rich countries have the highest cancer rates, and the rising incidence of the disease is seen as resulting, in part, from a diet rich in fat and proteins and from the toxic effluvia of the industrial economy that creates affluence.

Illness as a Metaphor – Susan Sontag

 

I began journaling my journey as a cancer patient because I believed and believe that I was and am going through what is unarguably a treacherous phase in my life that will culminate in my death. In this, the fourth essay in the series, I want to talk about why I am writing these essays. Writing about cancer by people undergoing treatment, is a flourishing genre, with innumerable books, blogs, social media posts and short videos produced in profusion by people afflicted by cancer. I am just one of the many.

And I wonder why I want to share my story with the world? Is it because I want people to acknowledge that I am doing something brave? I am reminded of Anton Chekov’s epic lines, “It is not the person unable to write stories who is mediocre, but the person who writes them and is unable to conceal the fact.”

I have recently come across the term ‘virtue signalling.’ As with most new expressions, it is linked to social media and indicates an exhibition of moral superiority. It is an attempt to show other people that you are a good person, for example by expressing opinions that will be acceptable to them, especially on social media.

I thought about the term and how my essay writing is nothing more than not-so-lowkey, passive-aggressive self-aggrandizement, or plain and simple ‘virtue signalling.’ I am letting the world know that I am unwilling to accept my situation, and I am extremely anxious and depressed, but am doing it in a manner that would be acceptable to all, without causing discomfort to everyone. The purpose is to gain sympathy, but when it is given, I don’t know how to handle it, and it just upsets me.

I want to be treated as an equal, just as I was treated before my cancer diagnosis, but paradoxically, when I am so treated, I feel an immense sense of hurt that my weakening condition is not being acknowledged.

I know I don’t have a long time, but when someone reminds me of it, I get emotionally charged, and feel utterly desolate internally, but I am quick to turn that into a joke, which again is a sign of ‘virtue signalling.’

Recently, a friend from Bombay remarked, “Whatever did you do to deserve this,” when I WhatsApp-ed her about my oncologist’s latest prognosis that of my life span being no more than three to six months.

I responded immediately with, “Sinned through my life…I’m 60 and I don’t regret anything that I did during my life.”

“It’s wrong,” she said.

“One has the choice of being grim about the disease and death and brood all the time or have fun. In any case, nobody lives forever,” I said.

As the Greek philosopher Polybius (200 – 118 BCE) observed centuries ago, “What man cannot control, he can at least accept. Misfortune may be borne with fortitude.” I will admit, without being immodest, that I have borne misfortune with fortitude. And I have accepted everything that I can’t control.

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The controlling metaphors in descriptions of cancer are, in fact, drawn not from economics but from the language of warfare: every physician and every attentive patient is familiar with, if inured to, this military terminology. Thus, cancer cells do not simply multiply; they are “invasive.” (“Malignant tumors invade even when they grow very slowly,” as one textbook puts it.) Cancer cells “colonize” from the original tumor to far sites in the body, first setting up tiny outposts (“micrometastases”) whose presence is assumed, though they cannot be detected. Rarely are the body’s “defenses” vigorous enough to obliterate a tumor that has established its own blood supply and consists of billions of destructive cells. However “radical” the surgical intervention, however many “scans” are taken of the body landscape, most remissions are temporary; the prospects are that “tumor invasion” will continue, or that rogue cells will eventually regroup and mount a new assault on the organism.

Illness as a Metaphor – Susan Sontag

 

In Mayor of Casterbridge,Thomas Hardy writes “Happiness was but the occasional episode in the general drama of pain.” He was referring to metaphorical pain. In my case, pain is physical, and it has become a part of my life ever since I started chemotherapy. Severe pain is indescribably tough and when accompanied by sleeplessness it becomes unbearable, making me cry aloud.

I tried to dissuade my friend Satish, who has, despite his ever-busy schedule, visited recently to meet me at home;  my home, I said to him, was a mess because Mahrukh and Che have been overburdened with household chores, their jobs, and looking after my needs. Satish said in his usual matter-of-fact manner, “I am coming to see you, not your home.” With him, I discussed my pain, and he explained to me that everything is connected to our minds. We experience severe pain because our minds tell us to. If we can discipline our minds, the pain would lessen considerably. We discussed the cause of anxiety – the chief reason being our preoccupation with our future and a sense of loss over our past. We miss the present.

Here and now. As Fritjof Capra explains this phenomenon. “A person functioning exclusively in the Cartesian mode may be free from manifest symptoms but cannot be considered mentally healthy. Such individuals typically lead ego-centred, competitive, goal-oriented lives. Over preoccupied with their past and their future, they tend to have a limited awareness of the present and thus a limited ability to derive satisfaction from ordinary activities in everyday life. They concentrate on manipulating the external world and measure their living standard by the quantity of material possessions, while they become ever more alienated from their inner world and unable to appreciate the process of life. For people whose existence is dominated by this mode of experience no level of wealth, power, or fame will bring genuine satisfaction.”

This is true for everyone. Not many have the luxury of not having to earn a livelihood and dealing with the constant need to earn more just to cope with the many needs of the family. In this process, our present is preoccupied with constantly planning. The present turns into the past swiftly, and we only have regrets of not being able to fulfill our dreams. We burden our future with the unfulfilled dreams of our past and squander our present in misery.

So, how can we bring back the focus on the present? I don’t know. But I have begun to think that if we can reduce the importance of money in our lives, we can lead a more balanced life that will be more centred on the presence, less dependent on planning constantly about the future, and feel less miserable about our past. But that is easier said than done because we don’t and can’t live in isolated silos like hermits. Strong principles and ideals must necessarily factor in the needs of our family; it is a responsibility that we cannot ignore.

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Our views about cancer, and the metaphors we have imposed on it, are so much a vehicle for the large insufficiencies of this culture: for our shallow attitude toward death, for our anxieties about feeling, for our reckless improvident responses to our real “problems of growth,” for our inability to construct an advanced industrial society that properly regulates consumption, and for our justified fears of the increasingly violent course of history. The cancer metaphor will be made obsolete, I would predict, long before the problems it has reflected so vividly will be resolved.

Illness as a Metaphor – Susan Sontag

Susan Sontag (1933 – 2004) published Illness as a Metaphor in 1978, and it explores the trajectories of tuberculosis and cancer. She updated the book in 1989 by adding a section on AIDS and its metaphors. The 1978 version of the book is a tour de force on the incorporating and absorbing tuberculosis by 19th century and early 20th century novelists in their works, and the needless romanticism of a dreaded disease. There are not many examples of cancer being a thematic underpinning for many literary creations, given its brutal inevitability.

As I end this essay, which may well turn out to be the last in the series, I am reminded of Graham Greene’s Monsignor Quixote, where he says, “When you come to the end of the longest road of all, you have to lie down and take rest – a rest from arguments and theories and fashions.”

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Mayank Bhatt is the Executive Editor of The Beacon. He is a novelist and essayist based in Toronto.

Mayank Bhatt in The Beacon