In celebration of World Cancer Day, a Support Group Meeting was held on Saturday, 1 February 2025 for CML and GIST patients in Pune. Milan Hakani, FOM (Pune) City Chapter Leader was interviewed to share his experience. Here is what he had to say:
On the eve of World Cancer Day 2025, the Pune Patient Support Group Meeting, while maintaining its regular features including doctor sessions, Q&A, workshops and more, stood out with some unique elements that reinforced the spirit of #UnitedbyUnique. For the first time we have held a meeting in collaboration with Deenanath Mangeshkar Hospital, Pune and its panel of physicians, headed by Dr. Sameer Melinkeri , HOD Hematologist and Bone Marrow Transplant, & Dr. Anusree Prabhakaran, Clinical Hematologist, from Deenanath Mangeshkar Hospital, Pune. The meeting facilitated a powerful union of individuals dedicated to living with CML and embracing life with dignity, in spite of their own unique cancer journey. I am very happy that this Pune meet, in its entirety, truly embodied the essence of being #UnitedByUnique.
1. How do these gatherings impact individuals, and what emotions surface when connecting with the FOM Community?
I have had the privilege of attending at least 10 regional meetings across Pune, Nashik, Aurangabad and Mumbai. As City Chapter Leaders we have always been actively involved- whether at the registration desk or handling other responsibilities. This close engagement allows us to deeply connect with the patients and their caregivers, giving us first hand insight into how profoundly these meetings impact our lives.
Some key takeaways are:
i. Meetings make the patients and their caregivers feel less vulnerable, weak and alone as we interact with other patients undergoing similar experiences
ii. It provides a safe platform to share and learn from one another, thus we are able to get more clarity, do away with our doubts and uncertainties, and become less fearful
iii. Perhaps the most touching part is witnessing heartfelt emotions in our interactions with the teams from FOM and The Max Foundation and the CML community at large. At such times, words often fall short!
2. Now it has been 20 years since we have been doing patient support group meetings, how do you think the meetings have evolved, what are the new changes in the discussions and workshops that you are seeing?
While the format of the meetings have remained more or less the same, however, over these last 20 years the PSGM has successfully taken on different roles at different periods of time, to match the evolving expectations of patients and their families.
Initially, 8-10 years ago, patients would come to attend these meetings with immense stress, fear about their new cancer diagnosis, and sometimes even misconceptions- such that their free medications from The Max Foundation would be stopped if they did not attend the meetings. However, after attending a few meetings, as we started gaining confidence, we realised we could live and manage our cancer journey more effectively. We now had the confidence to lead a normal life and our outlook evolved further. Slowly at our meetings, I notice older patients become role models, who are eager to share their own experiences to ease the fear and stigma felt by the newly diagnosed patients. We have also seen patients who regularly attend meetings to recharge their confidence and meet the physicians and the teams from FOM and Max Foundation.
The discussions during our meeting cover emerging and latest trends covering TFR, Medicine dosage, side effects, compliance, pregnancy and so much more. Our workshops cover a diverse range of sessions including Drama and Art Therapy.
3. What would you like to see in future meetings?
I feel we should start discussing and advocating for Special Status for CML patients, both at the workplace and society in general. We should also scale up the Volunteer workshop initiative to empower as many patient leaders as possible as FOM Volunteers to work in turn for other cancer patients and their families.
In the workshop section I would be happy to see Sports Therapy introduced as well. Incorporating indoor games like chess, carom and antakshari, in teams. This would add a fun and an engaging experience for the patients and their caregivers.
4. In your experience with Support Group meetings, can you share a specific instance where you witnessed a notable impact or positive outcome for a patient?
The overwhelming sense of positivity at our Pune meeting speaks for itself.
Something remarkable I would like to highlight is what I observed during this meeting. In the Art Workshop Therapy session, patients and their caregivers were asked to draw any image which represents “Hope and Happiness”. Most participants chose to draw images related to MAX or FOM, which clearly reflects how deeply we feel connected and grateful to FOM and MAX. One particularly touching moment for me was when a young patient from Satara, was searching for Amma (Viji Venkatesh, but who could not attend the meeting) throughout the meeting, ultimately sketched a portrait of Amma as a heartfelt expression of his gratitude and appreciation for FOM and MAX.
It is my pleasure to share some photos and videos from the meeting, capturing these special moments.
Leave a Reply