The First Six Months – Diary of a Cancer Patient

Mayank Bhatt

A man is happy so long as he chooses to be happy. ― Aleksandr Solzhenitsyn, Cancer Ward

May – October 2020 

Before May 2020 I had a vague idea about what pancreas is and where it is located in a human body. In mid-May 2020, in the middle of the Covid-19 pandemic lockdown, my stomach and back began to ache. The pain became intense rapidly and I was worried it was Covid-19. I called Toronto Health and was directed to get tested at a local hospital.

On 25 May evening – the day George Floyd was murdered in Minneapolis, Minnesota, USA – I reached Emergency at Humber River Hospital. All the routine tests were done including a chest x-ray for suspected lung clot. The next morning, I was told there was nothing wrong with me. But the pain in my stomach and back was persistent and acute. 

My family physician Dr. Bertram King told me get an abdomen ultrasound done, and the next day his assistant Debbie called me early in the morning to say that I should rush back to the hospital and tell the doctors to test me for pancreatitis. It took all day for the tests to be conducted, and towards late evening I was told that I would be in the hospital overnight. I ended up being there for the next five days, and by 5 June it was confirmed that I had pancreatic cancer. 

Laying on the hospital bed, with nothing better to do, I browsed the internet on my cellphone. The internet informed me that “the pancreas plays a big role in digestion. It is located inside one’s abdomen, just behind the stomach. It is about the size of one’s hand. During digestion, the pancreas makes pancreatic juices called enzymes. These enzymes break down sugars, fats, and starches. The pancreas also helps the digestive system by making hormones. These are chemical messengers that travel through the blood. Pancreatic hormones help regulate blood sugar levels and appetite, stimulate stomach acids, and tells the stomach when to empty.”

For me, it was my first experience at being in a hospital overnight. And, as fate would have it, I would be hospitalised frequently between May and July. Hospitals are depressing. Ageing people, often in pain, cry themselves hoarse, seeking attention. The harried hospital staff manage well in normal circumstances, but with the pandemic in total control of our civilisation, and physical distancing a strict requirement, almost every patient on the floor was desperately lonely, and in need for more attention than is usually the case. 

This was because there is only so much of TV one can watch, or surf the internet on the cellphone before one gets comprehensively fatigued mentally. I noticed that when the mind goes numb, one begins to talk to oneself… unconsciously…not in the mind, as one always does, but loudly, conducting a debate with oneself in a dark room… in full sentences. I would wait anxiously for dawn and then call my wife Mahrukh, just to hear her voice. She was my link to sanity. On 5 June, after I got the initial diagnosis, I was discharged. I took an Uber back home. 

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Surely people should eventually cease to be surprised at anything? And yet they continue to be. ― Aleksandr Solzhenitsyn, Cancer Ward

I was told that an oncologist would call me soon to give me more details. Dr. Sabrina Allegro, a young oncologist, who had come to examine me while I was in the hospital, called me and shattered my world. I had carcinoma of pancreas that had metastasized to the liver; in lay terms it meant I had stage 4 pancreatic cancer, which had spread to the liver. When cancer metastasizes, it is inoperable – it can’t be excised surgically, or be treated with radiation. The only treatment is chemotherapy.

In her matter-of-fact tone, the oncologist informed me that a stage 4 pancreatic cancer patient has an average life expectancy of six months to two years.

Mahrukh and my son Ché were sitting with me as I spoke to the oncologist. Ché clung to me for what seemed like eternity, weeping, not wanting to release me from his bear hug. My little boy, who had grown into a fine young man – taller, bigger than me – and who had bravely battled his own mental challenges, was unsure, uncertain. He wanted to be the protector and the protected. His mother, Mahrukh, my wife of 25 years, always the practical and down-to-earth woman of substance, was crushed; unwilling, unable to comprehend the finality of the diagnosis. She averted my gaze, quietly shedding tears. 

The first thought that came to my mind after my call with the oncologist was our journey so far from India, as a newcomer family in Canada. A journey that we had embarked upon together 12 years ago was seemingly ending abruptly, and they – the mother and son – would be on their own. In a short span of a dozen years, Canada had reshaped our family, bringing us closer, even while making both my wife and son more independent. In India, age was biological, hierarchical, but here in Canada, it was nonlinear, we were practically of the same age because of our shared experiences as newcomers. 

And, after so much struggle and with only a modicum of success, I would be leaving them to fend for themselves for the rest of their lives. It felt like I was abdicating my responsibilities, and taking the easy option of death. 

I called my mother Durga and sister Sonal in the US. They, too, were overcome with emotion and wept. Sonal is a hardnosed, detail-oriented, pragmatic woman who has fought circumstances to emerge successful in her career. She wanted to know more, and suggested many options. Durga managed to control her tears because I told her not to cry. In the days to follow, she wouldn’t reconcile to my condition, but remained equanimous, stoic. 

Unwilling to accept the stark reality that had been presented to me, I sought a second opinion, from a reputed Indo-Canadian pancreatic surgeon, who suggested that I do a CT scan with dyes. The first CT scan, which had determined the cancer and the spread to liver, hadn’t used dyes because of my kidney ailment. 

Four years ago, I had been diagnosed with Glomerulonephritis, a hard to pronounce word for chronic kidney ailment that essentially means my kidneys don’t work; they are unable to process protein. Using dyes to sharpen the CT scan image would adversely affect the kidneys. The nephrologist Dr. Melvin Silverman, who has nurtured my kidneys for the last four years, was unwilling to give permission, and merely said that he would enlighten me to the risks. But, in the end, we went ahead and used dyes in the CT scan. The result was no different: the cancer had spread to the liver. So. surgery was again ruled out, and chemotherapy was the only available option. 

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Sometimes I feel quite distinctly that what is inside me is not all of me. There is something else, sublime, quite indestructible, some tiny fragment of the Universal spirit. ― Aleksandr Solzhenitsyn, Cancer Ward

In a month, I was to have a chemo session every week for three weeks and then a break, and then the cycle would begin again. On 3 July, I had my first session of chemo at the hospital, and was administered gemcitabine and nab-paclitaxel – the global norm of chemotherapy medication for pancreatic cancer. 

The aftereffects of chemo were severe. I had high fever and had to be hospitalised. Another session on 10 July also resulted in severe aftereffects. The blood work report indicated that the liver enzymes had risen to unmanageable levels, and the medical team treating me decided to stop chemo permanently and move me over to palliative care. There was no chemo session on 17 June. 

I wasn’t happy with that decision and emailed my oncologist. She met me the next week on 24 July and agreed to restart chemo with reduced dosage (70%). This proved to be the right dosage. It began to show in the blood work. However, my arms were swollen, and I had to be hospitalised again because the medical team at the hospital suspected that I had bacterial infection. 

The oncologist also recommended that I should be administered the chemo drugs through a hole in my chest – a Cath tube. That procedure delayed the chemo by a couple of weeks again. And then, on 21 August, I had my fourth chemo session. This time around, it worked. Two more sessions in September 2020 and then I had another CT scan with dyes. 

The result: Marginal improvement. The size of the tumour both on the pancreas and the several spots on the liver had slightly – ever so slightly – reduced. The oncologist declared she was satisfied with the results and would continue with the chemo till December 2020 before doing another CT scan. 

This is not the end; it is the beginning of a long, arduous battle that I may lose; but I am going to fight it with all I have. 

November 2020

Canadian healthcare system

During the last four months I have often wondered what I would have done if I wasn’t in Canada at this stage of my life, diagnosed with two terminal illnesses. I would certainly have been pauperized. In Canada, I am paying nothing at all for my treatment. I have often debated Canada’s free healthcare system with many of my professional associates at institutions such as the Canada India Foundation, and have allowed myself to be convinced that the system would work better if the patient was made to pay. After going to the hospital every week, I am no longer of that view. I am convinced that Canadians do not adequately appreciate the Canadian healthcare system, and those who advocate privatizing it don’t understand it at all. 

Between May and July, I was admitted to the Humber River hospital on multiple occasions. On each occasion, no less than 30 medical professionals – from attendants and nurses, to doctors and specialists – looked after me, with care, concern, personal attention that on occasion even made me uncomfortable, like when a nurse to my utter astonishment insisted, she would bathe me. 

Since July, I have had multiple sessions of chemo, and at each session, the nurses at the Cancer Clinic at the Humber River hospital are genuinely caring. Perhaps, it is their training, perhaps, it is their instinct, perhaps it is their professionalism, whatever the reason, I have never felt so cared for and looked after, ever in my life. 

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“A man of talent can understand and accept death more easily than a man with none—yet the former has more to lose. A man of no talent craves long life, yet Epicurus had once observed that a fool, if offered eternity, would not know what to do with it.” ― Aleksandr Solzhenitsyn, Cancer Ward

Death and dying

I am writing this in mid-November on the Gujarati New Year, which is a day after Diwali. I have been living with cancer now for four months; as per the oncologist’s original, pre-chemo prophecy, I may either be alive for the next two months or about a year-and-a-half more. Or, if the chemotherapy works, then, maybe a bit longer. Pancreatic cancer is the third leading cause of cancer related death in Canada with a mortality rate of 92%. 

My family, friends, colleagues have given me many examples of people they know who have, after being similarly diagnosed, gone on to live for many years, with or without cancer. And while all that is encouraging and helpful in some ways, I have not been afraid – at least so far – of death and dying. 

As I told my mother when she visited me in August, “I have neither dukh nor darr,” at the prospect of dying soon. In these months, there have been only a couple of occasions when I broke down emotionally, and again, that had to do with the economic uncertainty that would engulf Mahrukh and Ché if I died soon. 

For me, the famed five stages of grief – denial, anger, bargaining, depression, acceptance – that were first identified by Elizabeth Kübler-Ross, a Swiss-American psychiatrist in 1969, happened all at once, on the afternoon of 5 June, when I was informed that I had pancreatic cancer. At the hospital, before I returned home, I had made by my mind that if I had a limited time to live, then I had no time for grief.

I have continued to remain active. I must thank the board of directors of the Indo-Canada Chamber of Commerce (ICCC), where I am the Executive Director, for allowing me to work from home. Although my decision to work from home has more to do with novel coronavirus than cancer. 

During the last four months, many of my friends have often remarked that I am “brave” at the equanimity with which I have accepted my condition. However, I don’t find my attitude to be anything but normal. I mean, how many people who are in my situation would willingly accept their fate? Nobody, I would say. Generally speaking, nobody wants to die; especially not want to die young. At 58, I am old, no doubt, but do consider myself young to die. So, I continue to live my life as before, doing the same things that I have done all my life; the only enforced change is in my diet. 

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The meaning of earthly existence lies not, as we have grown used to thinking, in prospering but in the development of the soul. ― Aleksandr Solzhenitsyn, Cancer Ward

Divinity and believing 

One of the aftereffects of chemotherapy has been sleeplessness. I have been a light sleeper all my life; usually five to six hours intermittent sleep each night. But the chemo-induced sleeplessness is severe, it lasts all night, and I sleep only at dawn, and can sleep only for a couple of hours at best. So, at night, I am either watching short videos on social media on my cellphone, or ruminating about life and living, death and dying. 

The one thought that recurs almost every night is whether there is life after death. As an atheist, I know there is no afterlife. I have remained convinced forever that there is no god or a supreme being, and that religion is a false construct that has done more harm than good to humanity. The notion of afterlife is created by believers who also created the notions of heaven and hell, and virtue and sin. 

I have remained convinced that these notions give the believers the liberty to continue to indulge in morally unacceptable acts and then hope for forgiveness from their god to ascend to heaven, and avoid hell, in the afterlife. On the other hand, the nonbeliever, the atheist, the agnostic, conducts herself – throughout her life – with moral righteousness because she doesn’t have the recourse of a grand pardon from an almighty. 

But to be honest, that certainty – of their being no afterlife or divinity – has taken a bit of a knock in the last four months. About a couple of months ago, I wrote in an email to Dr. V. I. Lakshmanan, a towering Indo-Canadian public figure, when he offered prayers for my health at the Sringeri temple in Toronto. 

“I want to share with you a personal quandary that I have been experiencing. A majority of my family members, relatives, friends and acquaintances are firm believers in God, even though they worship different Gods. And many of those who know me have offered prayers to their Gods to help me recover from my present ailment. Normally, I would tell them not to waste time in such futility, because I have been a nonbeliever since I was a teenager. 

But since the last two months I have stopped reprimanding my friends for their belief. I have yet to understand the reason for this change in my attitude. Perhaps it stems from fear. And if that is, indeed, the case, it altogether negates the purpose of religion and believing in the almighty. Fear of death should not be a reason at all for an atheist to turn into a believer. 

I have not objected to my wife Mahrukh’s insistence that I should seek my chemotherapy appointments only on Fridays (which is a holy day in Islam). My mother and sister, who are in the US, offer prayers to Ganapati every evening for my recovery. I have not objected to an acquaintance informing me that she will pray to Sai Baba (of Shirdi) for my speedy recovery. I have not objected to nearly everyone writing to me that they will pray for me.

Satish (Satish Thakkar, a common friend, an entrepreneur, and Chairperson of Canada India Foundation) had told me a few weeks ago that he would be offering special prayers for me at the Sringeri temple. I was overwhelmed emotionally when he said that. “I have tremendous respect for you, and I feel honoured and privileged to be counted among the people you care for. Sir, I am sure your prayers will have a positive effect. 

But I also want to let you know that I don’t fear death. Since I was diagnosed with kidney ailment four years ago, I have begun to accept that everyone who is born must die. In some cases, it is sooner than expected, but that is the inevitability of life.”

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It is not our level of prosperity that makes for happiness but the kinship of heart to heart and the way we look at the world. Both attitudes lie within our power. ― Aleksandr Solzhenitsyn, Cancer Ward

Almost every night, my mind is a battlefield arguing with itself about divinity. When I am awake, I am unwilling to accept that there can be afterlife, or that there is a supreme power, a god, if you will. But in the dead of night, when the only sound is of my laboured breathing (again, an aftereffect of chemo), I wonder if there is afterlife would I meet my father Meghnad again, in heaven or hell? It has been 23 years since he has been dead. I would love to meet him, speak to him, hug him, and hold his soft hands in my hand. 

I also wonder whether in the afterlife you are only able to meet those who you knew personally when they were alive, or can you also meet those who you didn’t know personally. If the latter is possible, the list of people I would want to meet is infinite – Mahatma Gandhi, Jawaharlal Nehru, to name the first two on my list; and Zarathustra, Buddha, Mahavir, Jesus, Mohammed – to know, understand, and, if necessary, argue with them the reasons that may have compelled them to start their religions. And it would be utterly fascinating to meet Brihaspati and Socrates. 

Change and continuity

The biggest and most noticeable transformation in me after cancer is my initial unwillingness to talk about it to everyone primarily because I was afraid of sympathy and pity. I preferred not to talk about it also because it becomes repetitive to talk about cancer and see a similar sort of response from everyone. I was constantly reminded of Edith in Stefan Zweig’s Beware of Pity.

There was another reason, too. I was no longer willing to communicate with some people I had merely tolerated for years; people who took me for granted, knowingly took advantage of my respect for them, contemptuously disregarded my privacy, pried into my personal space, and in the process inflicting grievous emotional wounds that refuse to heal. 

They took my silence for stupidity. 

I often wish I could add many more people to this list, but decency and respect prevents me from doing so. Perhaps, it is only a matter of time before the cancer turns serious, and with death staring me in the face, I will finally muster courage to stop talking to the few that I continue to tolerate.

But overthinking has been my bane. I wrestle with a dilemma: If my life is to end soon, what is the point of holding on to and harbouring grudges? I should rather be mending relations with everyone. Also, I am increasingly becoming aware – more aware than before – of my enormous shortcomings as a human being. When I know my faults and flaws, who am I to judge others? And yet, I’m unable and unwilling to exonerate others of what I consider to be their bad behaviour, which could well be just a perceived slight on my part. It is because I want to nurture that feeling of having been wronged, a feeling that perhaps has no basis in reality or is no longer relevant. But I am unwilling to move on because I’m secure in my feeling of having been wronged; it makes me feel better. 

Life would be so much simpler if only we could conquer ego easily. 

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One should never direct people towards happiness, because happiness too is an idol of the marketplace. One should direct them towards mutual affection. A beast gnawing at its prey can be happy too, but only human beings can feel affection for each other, and this is the highest achievement they can aspire to. ― Aleksandr Solzhenitsyn, Cancer Ward

December 2020

One of the happiest transformations is my relationships with my son. Ché has always been the independent sort, or at least that is what I believe. He has had mental challenges growing up, adjusting to Canada, and had a hard time dealing with it. To his credit, he came out of it successfully and through his own efforts. As the son of immigrant parents, and being a first-generation immigrant himself, he learnt to be responsible early in life. He has his mother’s pragmatism and can look after his needs. 

But in all these years, he has always been a son to me. And then, in the last few months, he became a man. He has become caring, concerned, and careful. He comes to me at every opportunity and talks to me. “Do you need something?” is his constant refrain, as he walks up to me and gently caresses my bald head with affection. He fills my water jug, gives me food, makes coffee for me. He is eager to do these tasks, and to him, they are not unnecessary chores or an imposed burden. 

In a matter of a few months, the boy has become a man.

Similarly, Mahrukh has taken charge of the family. Actually, she has always been the one to wear the pants in our home, but after the ailment, it has become more evident and utterly natural. Her steady and steadfast attitude has given her certitude and balance. She is a hard-working employee; a dependable colleague; qualities that have led to her gradual rise in her job. 

In the last six months, she has dexterously juggled, with consummate ease, the dual responsibilities of managing her career and her home. She had the wisdom to step down from a hard-earned promotion that she got earlier in the year, so that she wouldn’t have to compromise in being my caregiver. Mahrukh is unable to express her affection, love and concern, but she makes up by doing. She is indefatigable, constantly on her toes, ensuring I have more than I need. 

My immediate family includes my mother and my sister, and talking to them every evening since the beginning of my treatment in July has been a soothing experience that I look forward to every day. In these last few months, I have often wondered why did Sonal and I not speak to each other as frequently as we should have? We have many things in common – our shared past, the same upbringing, the same exposure to the heady mix of idealism and creativity of our parents – Meghnad and Durga; and yet, till six months back, we hardly spoke. And I’m happy that it has changed. 

►●◄

Should a man, to preserve his life, pay everything that gives life colour, scent and excitement? Can one accept a life of digestion, respiration, muscular and brain activity-and nothing more? ‘Become a walking blueprint? Is this not an exorbitant price? Is it not a mockery? Should one pay? ― Aleksandr Solzhenitsyn, Cancer Ward

I find myself experiencing a new kind of calmness, a willingness to accept my circumstances without the compulsion to change either my surroundings or my condition. The most telling is the ease with which I have begun to accept the transient nature of everything. The fragility of human existence becomes all-too real when experiencing the aftereffects of chemotherapy. My chemo sessions are on Friday, and by Sunday afternoon the aftereffects kick-in. On Sunday afternoons, I’m immobilized with severe pain and rising fever. In those few hours every Sunday evening, I often feel that perhaps death would be a less painful option. I don’t fight such thoughts. My nails and toes ache, chemo has made them yellowish and brown. The pigmentation on my face intensifies with each passing week, I resemble Gollum from JRR Tolkien’s The Lord of the Rings, or as a friend helpfully suggested, Sméagol.

It was only when both Mahrukh and Che insisted that I talk to my oncologist about my condition, that I did. These were routine aftereffects of chemo, she said. 

As my next CT scan date was nearing, I became nervous of the result. This would be my fourth CT Scan (and the third with dyes) in six months. It was on 22 December 2020. The procedure while swift is fraught with discomfort because of compulsory fasting, and going without water for several hours. 

Dr. Allegro, the oncologist, had scheduled our next appointment a week after the test, probably because of the interlude of holidays. On 22 December evening, she called me, and before I could be dismayed, cheerfully informed me that she “was happy with the test results.” Evidently, the pancreatic spot had reduced in size, although the spots on the liver remained unchanged. “I wanted to share this piece of good news with you so that you and your family enjoyed the holidays.”

Chemotherapy would recommence in 2021.

I found that to be so utterly benumbing that I went into a momentary stupor after she hung up. Then, I called Ché and clung to him, crying out loud in relief. Mahrukh, on her way home, from work, was so apprehensive about the results of the CT scan that she had to be told twice about what the oncologist had said before it registered on her mind, and when it did, the relief on her face was profound.

The previous night I hadn’t slept a wink because of anxiety, and that night I couldn’t sleep because of relief. Cancer hasn’t been cured. But there is hope. 

******* 

Note
Cover image courtesy: https://janeaustensworld.wordpress.com/2011/11/17/the-noble-goose-and-its-many-uses-by-man-over-the-centuries/

Mayank Bhatt is a Toronto-based author. His debut novel, Belief was published in 2016.
He is also Contributing Editor of The Beacon

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