A life that is not allowed “To rust unburnished, not to shine in use.”
Poonam Kankani – Kolkata, 2008
I very much wanted Neel to write this so-called story for the Book of Stories before the Kolkata meeting but somehow he felt he could not do it. When Amma asked me to pen down something I decided to write it, so finally here it goes…
The year 2000 was a nightmare for me. I reached Faridabad on the 4th of September 2000 after a month long stay with my parents in the South. Neel had come to receive me. I had missed him and was so happy to see him. We had been married for almost two years. I realised he looked very weak and pale. I was surprised that my normally fit and healthy husband looked like this and was a bit worried but he felt that this was one of the usual “wife-worries”. The next day, he had a temperature around 100 degrees. It so happened that my nephew was not well and Neel had to take him to the doctor. I was very relieved when my father in law insisted on Neel's checkup being done as well. The doctor examined Neel and asked him to get a few blood tests done which anyway seemed to be quite a normal procedure. It seemed to be just a routine requirement.
The 6th of September was a VERY VERY BAD day for us. The reports had come. Nobody mentioned a single word but it had become obvious that there was something alarming. I was so frightened and felt so insecure. The next two – three days were the toughest. Everybody seemed upset. But no one was saying anything. I didn't know what exactly had happened. I just cried and cried but could not gather courage to ask someone what exactly went wrong. Papaji-Bai (My in-laws) calmed me down by saying that there was nothing serious. Everything would be all right. But there was no doubt it was something very serious and then the truth hit me. I had not imagined it even in the rarest of my dreams that Neel would have CANCER. I had always felt with the strength of my feelings for him I would come in between him and any damn devil. The pain on everybody's face was clear. No one ate or slept well. Nobody looked into each other's eyes.
Then on the third day, I finally saw the reports. I could make out what it stated; high counts in the White Blood Cells – Leukaemia!!! And the picture was clear. Though I was sinking inside, I faced him boldly. This was not the time to hide anything from each other .Both of us talked it over and tried to come to terms with the report and what it actually meant. Chronic Myeloid Leukaemia was confirmed. It was the Final Diagnosis. He went to Rajiv Gandhi Cancer Research Hospital in Delhi for expert advice from an oncologist. Dr Dinesh Doval saw him and prescribed him a drug called Hydrea. It had quite severe adverse effects. Neel seemed to be getting weaker day after day. He had breathing trouble and it was very painful to see him suffer like that. But I did not cry in front of anybody. I don't know what had transformed me into such a hard rock with the ability to withstand all the pain.
Time passed and Neel struggled with the disease and its treatment with Hydrea. The next year in April 2001, Neel’s treatment was changed and he was prescribed Interferon along with Cytosar. Every evening, he would have to take an injection and get pricked on his thigh. There would be fever on and off. Interferon had such terrifying effects. My God! Even today, the mere mention of Interferon gives Neel goose flesh. He would tremble like a child and had continuous episodes of vomiting and a tendency to go into depression. During this time, we had started wheat-grass juice for him and many other such supportive nature cure therapies which we came to know would be of help. Life had become almost mechanical. We are a joint family and each one had taken certain responsibilities and had so much to do in the process of managing this situation that the family found itself in. Neel's eldest brother Shyam Bhaiya got busy gathering all the knowledge he could get on the disease and its cure. Papaji made all the alterations in Neel's lifestyle and diet. Bai, as we all lovingly call his mother, started every prayer and mantras she could remember to keep her son safe. And in fact, the busy routine kept all of us so engrossed all day, every day – there was no time to think or get depressed.
I had fully controlled myself and was sure that I would not waste the time I have with Neel by simply worrying and crying. I learnt to value life, value time and togetherness. The love and support of all the family members was immeasurable. In such testing times, family ties and bonding really make a huge difference. Medicine alone cannot be a complete cure. This mental aspect and will power has a great role too. Neel throughout was the calm and composed self he always is.
Finally in February 2002, we came to know of the magic bullet – "GLIVEC" from Novartis, the magicians- The Max Foundation and loving people like AMMA and the extended family of "Friends of Max" .It put an end to our misery. There were no problems after that. And to this day, Neel is on Glivec 600 mg and is perfectly alright.
This episode in our life taught us how valuable life is! A long life with no passions, no motives and no goals is a sheer waste. The thrill of a journey is not the destination but getting there, rather to skid sideways, shouting “Oh what a ride!" I remember the poem ULYSSES by Lord Alfred Tennyson. It has a line that sums up my mantra in life:-
“How dull it is to pause, to make an end,
To rust unburnished, not to shine in use. "