Penguin Books Australia

1

Lessons from my Nanima

Few doctors stumble into becoming a cancer specialist. My earliest brush with the disease came when I was ten and my beloved grandmother, my Nanima, was diagnosed with the disease at a late stage. She went from a healthy and devout woman to a vulnerable and ailing patient, all within a period of weeks. Her transformation was as devastating as it was complete. Although I was young, there were many occasions during the last phase of her life that left an impression on me. It is only as I grew older and became a doctor that these memories, once isolated episodes, formed the scaffolding of the realisation that the same issues that had affected my Nanima still haunted the lives of modern cancer patients.

Back then, numbed by sadness, my family had assumed that the technology, especially in provincial India, simply wasn't there to save her or help us come to terms with her demise. But how was it that, when medical science had advanced beyond our wildest imagination – even treating diseases that were once deemed incurable – many patients and families still echoed the sentiments we felt all those years ago? Could it be that, infatuated by the science of medicine, we had ignored its art?

I became an oncologist to find out for myself but also to be a part of the remedy. I quickly discovered, to my disappointment, that patients like my Nanima existed everywhere. They were everyday people – somebody's parent, somebody's child, a grandmother or a husband. One day they felt well, another day something just did not seem right. It took weeks, maybe months, to diagnose the condition, and when the diagnosis was made, it was one whose very name filled the mind with a sense of unfathomable foreboding and unending sorrow. The betrayal of the body continued when it defied treatment, or when it played along initially, only to succumb without warning to the ravages of cancer.

Tracking the progress of patients, I saw, unbelievingly at first, that what my family had witnessed then was far from an anachronism today. My Nanima, long hospitalised, had scant contact with her oncologist. Her husband didn't even find out her diagnosis until well into her disease and her children fed hungrily on the infrequent morsels of information relayed through her eldest son, who, despite being highly educated, struggled to gain a clear picture of the situation. So it was that we all drifted in the fog of misconception and breathed in an air of desperate, but ultimately false, hope until my Nanima sank into a coma and died.

The oncologist who treated my Nanima came highly recommended and no doubt applied all the available knowledge in treating her. But twenty-five years on from her death, our grief sometimes still seems palpable and unresolved. I wish that the oncologist had held my Nanima's hand and told her what to expect. I know that she, being the devout woman she was, would have chosen to go home to die, and pray at the same temple where she prayed for a happy marriage, healthy children and many grandchildren. I wish the oncologist had told us that although my Nanima's death was inevitable, our aimless walks through perpetual corridors of fear and guilt were not. I wish he had made the time to talk to us and answer the questions that tortured our minds. Why did she get cancer? Was she in pain? How much longer did she have to suffer?

Cancer patients, and indeed sufferers of a multitude of other terminal illnesses and their loved ones, face the same conundrums and express many of the same misgivings today. I know now that there are still no sophisticated answers to these questions. But what I also see is that even after twenty-five years of trying, it can be hard to fully reconcile with a death that was not accompanied by the treating doctor's compassion, honesty and sensitivity.

My family's experiences were not unique then and would not be so now. As I treat my own patients, I find plenty of gaps in the care they receive from me and my colleagues. Official reports abound with the factual errors doctors make, such as operating on the wrong side of the body or prescribing the incorrect drug, but what they do not register are the more frequent, everyday occasions when we do not talk to our patients as fully as we ought or when we fail to address their concerns that we know lurk beneath the surface – sometimes because we lack the time, but often because we are unsure how to do so.

The patients in this book were once ordinary people going about their day-to-day lives. They were parents, grandparents, carers, accountants, doctors and lawyers. Something about their cancer journey left an impression on me, whether it was frustration at my inability to effectively combat their disease or my hesitation, ill-calculated, in engaging in a timely and meaningful conversation with them and their families. Within these pages, there are patients who beat the odds and returned triumphantly, and others who desperately made me wish that they too could have lived longer because their very presence served to enrich humanity. There are stories of moral conflict, ethical dilemmas and squandered opportunity. Ten years on from when I had my first taste of oncology as a junior doctor, there is an overdue reflection on how the experience changed my life. Some years after qualifying as an oncologist, I would also learn how no amount of professional loss prepares one for the intrusion of a personal tragedy. Just when I thought I understood the essentials of being an oncologist, I became a mother. I had expected motherhood to transform the landscape of my personal life but I had never imagined the enormous impact it would have on my relationship with my patients. Suddenly, heartaches were magnified, priorities altered. I found myself at one with parents who cared more to go home and spend their last days at the beach with their children than have another round of chemotherapy.

There is an undercurrent of sadness to many of my encounters, but I see them as stories that salute the remarkable human spirit. Every individual's battle with cancer and every family's ordeal in the process is somewhat different. But the longer I practise, the more I discover how courageously cancer patients take on a challenge they did not ever bargain for. These patients do not see themselves as valiant or tenacious; indeed, among other things, cancer erodes self-confidence so much that many openly feel unremarkable and ordinary. I hope my recollections prove that their sentiments are a far cry from the truth, for I find my patients nothing short of inspiring. Their perspective is hard-won but invaluable. Despite the scourge of illness, they somehow bear the grace and resilience of many. And their courage in facing up to life's inevitable but greatest blow is as remarkable as it is hard to truly fathom.

Being a doctor, especially an oncologist, allowed into the most intimate recesses of patients' lives, is an extraordinary privilege. The experiences – humbling, levelling and thought-provoking – have long been my companion; a private well of strength and succour.

Every patient provides a lesson in the long road to becoming a better doctor, a more complete oncologist. In a corner of my heart, I cannot help but feel that heeding these lessons, sharing them, and using them in the days that lie ahead, is the best tribute that I can pay my beloved Nanima.