Armaan Basheer – Hyderabad, October 2007
My mother was diagnosed with CML in October 2004.
I was never a care giver to my Mom; in fact she has always been the one for me right since my childhood. Her role as a loving, caring and responsible mother never changed. Her diagnosis came as a rude shock to us. We didn't know what to expect or what to do. At first we thought there was some mistake in the diagnosis. Like every other cancer afflicted family we got more tests done, consulted many doctors, got second and third opinions before we finally accepted the fact that she had cancer and was going to die soon.
I cursed God, because that was all I could do.
The timing was very bad because as a family we had a major crisis on our heads and each and every one of us had some obstacle or the other to overcome in our personal lives. We were shattered; some felt guilty, others felt helpless. Our first interaction with a prominent doctor was devastating as his whole approach towards my mother's disease was very “to the point” and brief. He said that she was going to die in a few months and that we should try chemotherapy and that it would be painful. The other alternatives weren't very comforting either. He very bluntly and at times aggressively told my folks that her life was over and that she would be lucky if she could survive more than a couple of months. My mother cried at the thought of living the rest of her life being a burden (in all aspects) to her family and living a life of suffering and pain. We ran around and met doctor friends, relatives, did a lot of research over the internet, tried to find more information about this wretched dreaded CML. We did manage to get a lot of information. We were also ready to buy the Imatinib, but we didn't know how long we could do it for. We didn't know how she would react to this drug.
Dr. Prasad put us on the Gipap program
One Dr. Prasad was such a contrast to the previous doctor. He brought hope, showed us proof, gave us his precious time and explained how the disease works; where it affects the patient and how it can be treated.He told us about Novartis' donation programme and how in collaboration with the Max Foundation they give this life saving drug to people like us and thousands of other people across the world. We were thrilled by this new development and progress and prayed for our papers to be approved. Soon we started receiving the required dosage of 400mg Imatinib (Glivec). We were also told of some of the symptoms and reactions that she would have to face when taking this drug. What we heard was only the beginning. Soon we knew of ten other reaction/symptoms, but believe me, we were still so happy. I didn't have the disease, I didn't take the medication and it was not I who had to live with the fact that I had cancer and that my life was probably over, so I can't really explain or talk or even write about what my mother felt. There were times when I would see her sitting in a corner and crying all by herself. Try as we might, we
couldn't understand her plight. As a mother she never let her role towards the family be reversed; she was always the responsible one, always taking care of us. I think more than any other doctor (due to time constraints) my mother got more help from her support group.
We are comfortable with this lifestyle now, blood tests; visits to the doctor, occasional biopsies are a part of our routine now. We have accepted this disease and the treatment that comes with a little pain. An occasional rise or drop in her counts doesn't worry us that much. We are grateful today, grateful to the disease, grateful to Max Foundation, to all the Friends of Max, to the people who are like my mother and who are still living normal lives. We learn through sharing and caring for each other, by talking about our grief our sorrow and also our happiness. It helps to share with others how we overcame this disease, and how and what they should do.
Because of Glivec we are like a normal family again.
Last year my mother and I went to China to visit my brother. I saw her resolve, determination, strength and courage. She spent countless hours shopping; sightseeing, caring for us, cooking Indian meals, meeting friends and she took care of herself too. Climbing the Great Wall was a risky thing to do, even for a strong and well built 25 year old like me. We told her on many occasions during the climb to stop or to go back and relax, but she never gave up.
“I want to go up the Great Wall of China and take a picture to send to my CML group,” is what she said.