The joy of getting back what I almost lost

Stuti Koner – Kolkata, 2008


I am a very loyal and close Friend of Max

Let me tell you my story, in brief. Since the beginning of 2002 I kept getting recurrent boils. I also began to lose weight and felt continuously tired and feverish. In June 2002 during my daughter Sakura’s summer vacation, I visited my parents who also reside in Kolkata. My husband Subrata had gone to Pune on an official visit. One morning when I was there I awoke to experience a sharp pain, as in a sprain, in my left ankle. The pain continued through the day and until the next morning. To my surprise, I found my other ankle had swollen too and was causing me much discomfort. I was however not very concerned, but my father insisted that I see Dr. Ashok Ghosh, our family physician. We consulted him on 4th June 2002 and he prescribed some ointment and some routine blood tests. When the reports came, we paid a visit to the doctor. He advised me to consult a Haematologist. My WBC had shot up to 1, 00,000. I had no idea what the report meant, so I was not worried. Ever since childhood, I have been very dependent on my family and I have been at complete peace with myself, letting them take the responsibility of making all major decisions. Some may find it odd but I cannot help it. It is the way I am. Anyway, let us get back to the point. My brother-in-law who is a pathologist, on seeing the report probably figured out what was wrong. But I was kept in the dark. They got in touch with my husband too. It is only due to my brother-in-law that my treatment fell on the right track straightaway and so no time was lost. A sonography was done which appeared to be absolutely normal. There were no other symptoms. Besides me, everybody was tense, quiet and pensive. Then on the 8th of June I was told that the next morning I would fly to Mumbai with my father for further investigations. I had no idea what was going on. But the mention of “Mumbai”– alerted me and in a flash I knew that I would be taken to the Tata Memorial Hospital (TMH) and that most probably I was suffering from ‘Blood Cancer’.  I was unwilling to go, as I feared confirmation of the suspected disease.

God has always been by my side and guided me all my life.

My father and I reached Mumbai on the 9th of June and my husband joined us there. The next morning on the 10th of June, we went to Tata Memorial Hospital and consulted Dr. S. H. Advani. I had to go through some examinations, tests and then a bone marrow aspiration. Next day Dr. Advani saw the reports and confirmed the diagnosis as CML. I did not react or cry, nor was I overly upset. Perhaps, because I was content with my life. What stunned me was the expression on my father’s face; the shock and the helplessness. It is difficult for me to put it down in words but I am sure many of my “Friends of Max” have gone through similar experiences. Dr. Advani presented things so simply that it was easy for me to accept it and I felt as if I only had a fever, which I could overcome with ease. He put me on Hydrea. During this period I felt very weak, vomited regularly and had constant stomach upsets. Even my complexion darkened. During my next visit to TMH after 3 months my case got transferred to Dr T. K. Saikia following Dr. Advani’s departure from TMH. I shall not see a more caring and affectionate doctor and it is my rare luck to come under his charge. Dr. Saikia put me on Interferon and I was being administered an injection daily. During my next visit to Mumbai in December, 2002, another bone marrow aspiration was done and the results were not satisfactory. This is when Dr. Saikia briefed us about Max Foundation and the GIPAP and asked us to see Mrs. Viji Venkatesh, now my darling Amma.  I was a bit hesitant and apprehensive of meeting her. But the moment I met her I felt relieved and reassured. She put me at perfect ease and, after a few formalities I was taken into the GIPAP family. I have been taking Glivec since 31st December, 2002. It was one of the happiest moments for me and my family. If it hadn’t been for this God-sent life-line from Novartis and Max Foundation maybe I would not have been around to write this.

Since the time I became a GIPAP member my life has changed.

My perception of the world I live in has changed. It has given me a vision of hope and a new purpose. I came to know and interacted with a large number of friends and well-wishers – an opportunity I could never have imagined. Today Amma, the moving spirit behind the noble endeavour inspires us with her astonishingly inexhaustible energy. Dr. Saikia’s care and compassion is so touching that every time I visit him I return with renewed hope and confidence. Novartis, Pat and Max Foundation have given me a new life. To me the gist of life is life itself. I feel blessed. I cannot find enough words to express the gratitude my family and I feel towards them. I often wonder at the range and intensity of the change I have undergone over the past few years. I now see things which I could not see earlier. I view the world in a different way and in a different light. I do not take things for granted as I used to. I have come to value things which meant little to me earlier. In a way I am rediscovering even the most mundane matters of life which existed all the time and which I hardly noticed before. My idea of ‘family’ itself has changed. I am proud of my enlarged family which I could never have dreamt of having earlier.
I am happy in my new world.

Dr. Saikia, Amma, Novartis, Pat, Max Foundation and Friends of Max are spread world-wide and have many well-wishers.  Being in touch with CML patients and others is itself a source of perpetual emotional strength for me. The bonds of sharing, mutual understanding and goodwill grow stronger with time. Today I love not only my niece, my daughter and others in the small family, but I share my life with a whole new world that sustains and reinvigorates my will to fight and win in this struggle against the dreaded disease. I receive so much love from so many all the time. I am around because of all those who are with me in this journey. My life has been enriched beyond measure and I thank God for everything. However, something at times does trouble me – that I only receive but cannot give. The little I try to do for others is nothing compared to all that I wish to do. But I must say that, if  I can ever be of any help, however insignificant it maybe, it will give me boundless joy and satisfaction.