Kolkata Meeting Report by Anshu Agarwal

At the Support Group Meeting held on 25 November 2023, for the CML & GIST patients at Tata Medical Center, Kolkata, organized by The Max Foundation for Friends of Max, Anshu Agarwal, FOM City Chapter Leader from Kolkata, was interviewed and asked to share her views:

  1.   How do these gatherings impact individuals, and what emotions surface when connecting with the FOM Community?

Support group meetings are essential for overall wellbeing of patients.  It is a great way to connect with other patients and share each other’s struggles. It is a lifeline for new patients as it gives a platform to talk to others who are going through the same/similar situations as them and makes them feel that they are not alone in this fight.  It is also a place for knowledge sharing which includes details about doctors, coping mechanisms on side effects, health and fitness etc.  Sometimes there are small and trivial things that one is unable to discuss with their doctors.  These support group meeting provide a safe and non-judgement space for patients to express their emotions, fears and concerns.

These gatherings also help to foster a sense of unity and camaraderie, reassuring patients that they are not alone in their struggles; many others share similar experiences. Those feeling low, draw strength from the positivity of others, cultivating an atmosphere of hope and encouragement.

For me personally, it provides me a great opportunity to meet with my fellow patient and caregivers’ community.  Being so busy in my day-to-day activities these meetings provide me with that reason to go and meet others and helps me to build new and rekindle old bonds.

2. Now it has been 20 years since we have been doing patient support group meetings in Kolkata, how do you think the meetings have evolved, what are the new changes in the discussions and workshops that you are seeing, you may choose to speak of the Know your CML App workshop, Unmet needs of CML patients, which have been held in the Kolkata meeting for the first time?

In today’s modern digital age to have workshops on “Know your CML” App is a welcome addition. I hope more and more people are able to use the App to help keep a track of their progress and to be in control of their lives in a contemporary way.

3. What would you like to see in future meetings?

To name a few:

If in future meetings, we could have smaller groups with patients segregated by the number of years they have been on treatment, discussions and learnings for patients could be far greater and specific to their current experiences. The different groups can be led by a member from the core team.

Have more progressive discussions with Senior doctors on contemporary topics related to the latest advancements in CML disease management from other parts of the world

Make effort to help increase the number of patients who attend the meeting with their caregivers to match FOM’s previous records of Patient Support Group Meetings.

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?

A fellow patient, who has now become a friend, initially joined our FOM meeting in tears and filled with fear and anxiety. Anxiously concerned about his small children’s future, we provided comfort and reassurance. Over subsequent meetings, we witnessed his gradual journey towards normalcy. Today, he actively participates in all meetings, extending support to others dealing with their fears and challenges. This reinstates our faith in the goodness of Patient Support Group Meetings and motivates us to do more and more.