Love begins at home, and it is not how much we do... but how much love we put in the action.
Arun wanted me to continue working because I enjoyed it so much, but in August 2014, I quit. His physical decline was apparent-I needed to spend more time with him. There was no point in repenting later. I had always believed that whatever was worth doing, had to be in service of the living.
We had been married for forty-one years. I had met Arun while doing my internship in Delhi in 1972. Most doctors usually marry doctors and feel okay about creating a hospital scenario even at home- A hospital away from the hospital,' is how I liked to describe it. But I thought that that was going too far. It had always been clear to me that I could never marry a doctor. The doctor couples whom I knew had doctor friends, and thus, their social lives centred around medicine and doctoring. There must have been a great sense of security in that, but, to me, it seemed that there was no other dimension to their lives.
Profession and family for me were two separate arenas with no meeting ground. The home scene had to be different. I was already a doctor and worked with similar people—the idea of a doctor for a spouse was too dull. My life had to be different. I had done little but study after leaving school- first for my undergraduation and then for my postgraduate degree. Arun and I were the same age. After a postgraduate degree in English, he had taken time off to hitchhike through Europe for a year, before joining his first job as a reporter at The Indian Express. I, on the other hand, still needed to complete a specialization before I could think of doing anything meaningful. The days of success with a simple MBBS degree were long over.
Ours was a marriage with a lot of understanding, best described as happy. We had our different professional pursuits which never entered the home-a tranquil place for the family. We gave each other space to do the things that mattered the most to each of us. Arun liked travelling and socializing while I liked to read. Both of us also enjoyed spending time with the family, Family holidays were times of complete togetherness.
Arun was many things-his surname was typically Syrian Christian, but he was born in Kanpur, and schooled in Kanpur as well as in Nainital. His college education was in Delhi and Lucknow. He looked like a 'cut Sardar' to the north Indian, a Pathan in Pakistan, 'one of them' in Kerala, spoke Lukhnawi Urdu, and his most favourite food was Mughlai. He enjoyed Sufi music along with jazz. Despite his name, he could easily claim antecedents from anywhere in India. At the time I met him, he was the antithesis of my father-a retired army general who was rather prim and proper. When we first met he was in the kurta-pajama phase of his life. He wore chappals, kept a beard and had long hair that curled behind his ears. He was completely different from anyone I had met before.
Our disagreements were few. His major 'flaw' was his punctuality, even though it did not matter in our context. In Delhi, everyone was late. Some friends even arrived at a party after dinner was served. But Arun was never late for an invite, often arriving before the host or hostess appeared. His insistence on punctuality was annoying at the time especially when he showed irritation at a five-minute delay on my part. Before I could start getting ready to go out, he would enter my room, banging at my door and then pacis noisily outside till I emerged. We were still the first to ar in any case. The whole show was predictable, even amusing sometimes. I realized early on in my married life that this was unnecessary friction—Arun never wanted to lose social time with his friends—and I learned not to take those extra five minutes, even after a long day at work.
All in all, it was a marriage that worked. Our son was the proof-always relaxed and happy to be home. We got on well, both collectively and individually, and travelled together extensively. We discussed all the important issues and found solutions through open discussions. Nobody was ever out of the loop. We were from three different professions—a journalist, a doctor and a wealth manager- but as a family we were one.
By the end of September, Arun started on Cabazitaxel and Carbozantinib after the previous combination had failed. While the former, a semi-synthetic taxoid, was similar to Docetaxel, Carbozantinib inhibited the enzyme tyrosine kinase, which reduced tumour growth, metastasis and blood vessel formation. This was the last combination of conventional drugs for prostate cancer. He tolerated this treatment well.A Necessary Conversation
We managed to spend quality time together, discussing outstanding issues, including questions about life and death. We all need to have these conversations with our loved ones. It helps everyone deal better with the situation. We had made all of our lives' decisions jointly and freely—there was no reason for the discussions about death to be taboo. At the best of times this can be difficult and emotional. Very often, these conversations left me with an overwhelming sense of loneliness. Anything born or living will eventually die. It is inevitable. And
Death is not a dirty word. We need to talk about it. yet, this topic is never discussed. We prepare for the birth of a child in every which way. For instance, the mother for is taught breathing exercises to help with pain during labour. helping her prepare for the pain to come. The husband is often a part of these preparations-she is not alone. Similarly, prior to surgery, every detail is discussed by the surgeon, just like in chemotherapy. The patient is made aware of all the likely complications and how to counter them. So then, why do we not talk about and prepare death? Being open with each other about death could ease the anxiety and the fear surrounding it.
For us, the question was: how could Arun's life be prolonged without compounding his suffering. The apprehension about what would happen was immense. When one is terminally ill, with little or no prospects beyond the agony and disability of the disease, should one not have the right to die? There is no way around the argument for dying with dignity.Euthanasia
It is the patient's autonomy to make such personal choices, considering the hopelessness (or hopefulness) of the situation they find themselves in. The right to refuse medical treatment is well recognized in law, and this includes treatment that sustains life-i.e. passive euthanasia. Within this law, the removal of life-supporting treatment in the face of imminent death, as well as do-not-resuscitate are both included.
Active euthanasia is illegal in India and remains a distant dream. But it has been prevalent in many countries in Europe, with the earliest adoption by the Netherlands.77 Oregon became the first state in the US to legalize physician-aided suicide in 1997 with the Death with Dignity Act.78 This law requires the approval of two doctors and confirmation by two witnesses. The doctors must agree that the patient is of sound mind and doesn't have more than six months to live. No one wants to see needless suffering. Caring for the dying, even in the medical profession, is a profoundly difficult task. It is devastating for the caregiver, who faces the patients biggest challenge-providing a satisfactory quality of life. When all efforts to eliminate the physical, psychological and social stress have failed, what then? Why should suffering be carried forward' when there is no cure? It is true that with social support and close family connections fare better with the stresses of their illness.79 The desire to hasten death only surfaces when there is loss of dignity, poor quality of life and the perception of being a burden on others. The solution lies in understanding the underlying problem and addressing it in an appropriate manner.
In India, this conundrum has been partially addressed. On March 9, 2018 in a landmark ruling, the Supreme Court of India made it legal for a 'terminally-ill individual to decline use of life support measures, allowing families of those in incurable coma to withdraw such measures to reduce the period of suffering, thereby permitting patient's euthanasia."80 The court also recognized the right of a living will-clearly spelling out one's wishes regarding medical treatment-made by a terminally-ill individual. A 'living will', made by a patient of sound mind, takes away the painful burden of such a decision from a family member. This right to live and die with dignity gives the patient a chance to spend their final hours or days with their loved ones-not in a hospital bed but at home.
Arun often asked me how he was doing and how much time he had left. I had no answer-I had often kept quiet. It was not that I was unaware of his anxiety or his predicament, but I didn't know how to address it. Finally, after much thought I explained the situation to him: 'Yes, you are on treatment options as most of the drugs tried so far are ineffective because of drug resistance, but while these current medicines work, there is still hope. You have no pain short and can still do all the things important to you-you need to relish the time left, we all do! It was not as if Arun was unaware of all this, but he needed the assurance that all was well at that time.