While Death is final , Life goes on
Remembering Max
And George Colaco and Bharat Bhushan
The Friends of Max is a one of its kind and the largest Patient Support Group for families impacted by two rare cancers , Chronic Meyeloid Leukemia (CML) and Gastrointestinal Stromal Tumour (GIST).
Strange bedfellows one might say, considering that these two cancers have nothing in common. Expect of course till, in 2002, Imatinib in the form of Glivec, burst upon the firmament of the treatment protocol of both these malignancies. Patients of both CML and GIST became beneficiaries of the Access Program put in place by manufacturers Novartis and The Max Foundation.
Having to be on life long medication and having to deal with the many implications that fact had on the lives of both patients and their families necessitated almost organically but very definitely the setting up of this support group.
Gradually we brought patients from all over India, both CML and GIST, into the fold and began putting in place interventions that would help in both understanding the nature of the conditions, the treatment protocol and the need for inculcating good adherence behavior because compliance was imperative to achieve required outcomes.
As we moved ahead we realised that perhaps GIST patients needed, given the very specific difference between both conditions, separate attention taking this very fact into consideration. GIST was certainty not as easy to deal with as CML (saying this without taking away from the common trauma in both of living with a cancer and being on lifelong treatment).
With this in mind we began holding meetings only for the GIST Community in various cities as well as set up a GISTers WhatsApp Group for facilitating easy sharing and communications.
Sadly, disease progression and ensuing death is more common in GIST.
Over the last years we have lost many friends from the GISTers group which has left us all feeling quite helpless and disturbed. There are no access programs for drugs used in advanced GIST and more often than not most patients are unable to find resources for these drugs. When someone from the community passes away that is like showing a mirror to the rest of us … forcing us to face our own mortality.
Last month we lost two of our very active and dearly loved City Chapter Leaders, both under treatment for GIST for many years. This understandably shook us all very deeply and each one of us in the group reached out, we ourselves getting as much solace as we gave to the grieving family.
On Saturday we held a meeting for the GIST group in Mumbai and it gave us all a chance to grieve together for our dear friends. It was also a chance to remember Max and the legacy he has left behind for us.
The photographs say more eloquently than any words how this coming together made us all heal together and how just the simple joy of being together reaffirmed the power of life itself.
Death be not proud …
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