My father is no more

My father was diagnosed with Multiple Myeloma, a form of cancer, about 7 years ago. He fought a valiant battle, but the inevitable happened on August 25th, 2013.

The journey was difficult, perhaps more so for him, and a tiny bit less for us, and we had the usual ups and downs. But the good thing was that the immediate family was not alone in this journey. He had helped so many people in his life, and the goodwill was tremendous not just in the extended family, but also in the neighborhood, in schools where he taught, his ex-students, and a whole lot more. We never really were alone. There was never a day when we needed some help, and some angel won't drop by. Just to give an example of my father's generosity, we are four siblings, and along with our parents, six of us lived in a one room efficiency for most part of our childhood. But no, we were almost never six of us in that room. It would always be 7 or even 8, because anyone in the family wanted to study in Delhi instead of being in the village, was most welcome to come and stay with us, not for a day or a week, but for years together.

And the support that we received from the doctors was just fantastic. May be we were lucky. Starting with AIIMS seven years ago, we moved to Rajiv Gandhi Cancer Institute near our house, and for the last three years, he was under the care of Dr. Ganapathi Bhat in Mumbai. There is an Indian saying that a doctor is next to God on this earth, and we had exactly this feeling with him. The way he would explain us all the details of the illness, explain options, counsel us, it has been amazing. Today, we can confidently say that our father received the best possible medical care throughout his long illness.

A cancer and its management is far more complex than a game of chess. Think of a chessboard which is so huge that you can't see the whole of it at the same time. Every now and then you will look at the pieces on some part of the board (in form of pathological tests). And then you will make your moves. But the opponent sees everything all the time. It will make a series of deliberate moves, and when you are convinced about the direction and speed of those moves, it will suddenly unleash a violent series of moves. And it won't even wait for your turn. It is a game that you are guaranteed to lose one day.

I have often wondered what is the motivation for anyone to even play a game which you know you are going to lose every single time. It is like asking why should Afghanistan play cricket with India. But then the losing team can still enjoy the game if they can think of milestones other than victory. Can they make sure that they don't lose in less than 40 overs, just to give an example. Physicians too can have similar motivation. Can we improve or maintain the quality of life, if we can't cure. This seven year journey has caused me to have a huge respect for the medical profession. It is not easy what they do, combining art and science, combining spiritual and real, and balancing difficult choices.

Every few days, there will be blood tests, and we will read those numbers. Ours and his mood, confidence and will to fight was intricately linked to those numbers. 10.0, 9.6, 9.3, 8.9, 8.5, 8.3, 7.9, and there is gloom, the will to fight is receding, the end appears near, he will start evading some medicines, and then an RBC transfusion will take the haemoglobin back to 10.0, and he will once again become punctual with all the regular medicines.

 The journey has also left some very uncomfortable questions. If we had not made him go through the chemotherapy in summer, would he have had a less painful departure. If we had agreed to another round of chemotherapy, would he have lived a few more weeks. A couple of weeks before his demise, when he still appeared to have a sound decision making abilities, he told us not to take him back to a hospital, not to give him anything intra-venous, not to have any more blood tests, and not have any injections. He desired a quick and relatively painless departure. But when the condition became serious, we couldn't resist taking him to a hospital and doing everything that he did not want. We perhaps delayed his departure by a week or so. Should we let someone go easily, even when a doctor says that there is a one percent chance of his revival and staying live for a few more weeks. These and many other such questions will keep haunting me for a long time to come. I know there are no good answers to any of these, but the heart keeps debating.

My father lived by his principles and cultural norms till the day he was in control of his body. Just three weeks before his death when he was in a Kanpur hospital, his greatest problem in life was not his cancer, but that the visitors were not being treated properly. If they had come home, he would have ensured tea and snacks for them, and if they come at the meal time, then they had to share the meal. But in the hospital, extending such hospitality was logistically difficult, and that pained him more than the pain in his bones. So he would ask each one of them to visit him at home after he is discharged from the hospital.

The most striking quality of my father was his honesty. I remember when I was going to US for higher studies, he went to the PDS office and applied to remove my name from the ration card. Seven years later, when I returned, he went back to the office to add my name. No one in the PDS office would believe him that my name was removed just because I was going out of India. People only removed names when they are getting another ration card somewhere else in India. There was no possibility of getting caught if the person is abroad and does not have a second ration card. Did he not want another few KGs of cheap sugar every month. But the issue with him was not the possibility of getting caught. The issue was always, what is right. This was such a rare case of addition that the file had to move up to a very senior officer, who was shown my passport and all other proofs that indeed this was the case.

While the death of a parent is always an irreparable loss, it does have its own silver linings. Our close knit family came even closer. A tragedy always brings out the best in people, and we are really fortunate to have been surrounded by a sea of good people at this difficult time.