World CML Day is aptly celebrated on September 22 becauseif it had not been for the fun Chromosome No 22 and 9 were having (at our expense), we would not be talking CML. But with Glivec and joint effort of Novartis and Max foundation the joke is on them. The reason why I am saying this is because Glivec, and the patient access programmes GIPAP and NOA have turned a potentially life threatening disease into a well managed chronic condition. On World CML Day I am proud to report that we may not be the most common but the most prevalent cancer in the world. What this really means is that more and more people are living with CML in India than anywhere else in the world. I would like to attribute this success to the tireless efforts of The Max Foundation, the support group they set up – Friends of Max, Novartis and our families. To me World CML Day is to honour the machinery of two organisations – Novartis and The Max Foundation with Friends of Max, my doctors, fellow CMLers and our families. We together ensure that each of us, lives a long fulfilling and good quality life.
Yesterday, we commemorated the World CML Day in Mumbai. The reporting time was 4.30 PM at the Max India office and as usual yours truly walked in an hour late at 5.30 (some things never change). I first entered Amma’s (As we all call Viji Venkatesh of MAX) office and found her talking on the phone trying to solve a problem of one our members. She greeted me and said “Sukanya I will hug you after I finish this issue”. This is Amma and MAX for you, always on their toes ensuring that this programme works seamlessly for us. I also met the Novartis team members Pankaj, Svetlana and Liana and truly it was nice to meet the people behind this programme. Fellow CMLers Anupriya Tripathi along with her friend Saloni and Paresh Ji, Suresh and FOM Volunteer Appa , were also present in the office.
The programme was to release orange colours balloons over the Arabian Sea. Orange being the colour of Glivec and Leukaemia as explained by Amma. I think this was the best way to mark our day as we are all living a fulfilling and uninhibited life with CML. Before, releasing the balloons, Amma made a short speech and informed us that ours is the most prevalent kind of leukaemia in India. This was followed by a scrumptious treat of Samosas and a beautiful custom made cake with blue and green icing with the CML Day logo that said September 22, World CML Day.
I will let you all in on a secret 12 years ago when I was undergoing intensive chemo therapy I had once mentioned to my mother “someday after I have spent at least 10 years I will release balloons in the sky to mark my success”. In 2001 when I had been diagnosed Glivec was still being tested and Bone Marrow Transplant was the only cure but not everybody had the best match. The average life span considered at that time was 5 years and 10 years if you were lucky. Although, I was hopeful I would get cured after BMT, we were not 100% sure (later, I found out it was not meant to be!).
So, who would have thought that after 12 years I would be actually releasing balloons in the sky to mark World CML Day and that too with such fanfare!!Thank You Novartis, MAX and Friends of Max for making it happen ?
Sukanya Lal, FOM Mumbai