At the Support Group Meeting held on 8th July 2023, for the CML & GIST patients at Jammu University, organized by The Max Foundation for Friends of Max, Vir Krishan Bhat, FOM City Chapter Leader from Jammu & Kashmir, was interviewed and asked to share his views:
1. Importance of Support Group meetings for patients:
Though the patients are on medication and are regularly consulting their doctors, patients still have multiple questions and doubts in their mind. Some questions they cannot share even with their family members or doctors. Such types of meetings help them to share these with fellow patients and get answers. In J&K most of the patients live in far flung hilly areas who do not have frequent access to the internet or to the social media. Most of the patients are not educated enough to understand the CML disease. Through their doctors and phone interactions they come to know of FOM. However, due to resource constraints they are not able to attend such meets organized across the country. Therefore, when they were informed by The Max Foundation that such a patient meeting is being held in their own state they availed of this opportunity and attended it from all the districts of the Jammu and Kashmir. Some had to travel for 10 to 12 hours to reach Jammu. They put up in Dharmshalas and other places but made it a point to attend the same. In the meeting they were educated by the doctors regarding the daily medicine protocol, timings, diet, life style and other important information. The patients interacted frankly and the doctors cleared all their doubts. It provided confidence and further will to the patients to fight the disease. Even their caregivers and family were enlightened about the treatment and some precautions to be taken, and were appreciated by the doctors and organizers for their valuable support to patients. The patients and their family members felt the importance of the meeting and hoped that many more such meetings will be held in the state.
2. What are your feelings when you meet the FOM community?
The feeling of the patients in the meeting was beyond any expression. The smile and joy were reflecting on their faces particularly when they saw Viji Amma at the registration counter on the meeting day. The sweet and encouraging words of Amma and Priyanka provided them with new hope and a fresh zeal of life. The literature provided at the meeting was very useful and was taken by all the patients. The Doctors response, power point presentation given by Priyanka and the Viji Amma opened the eyes of patients. The commencement of the meeting with the national anthem sung by a renowned professional singer Ms Sunita Bhan, gave a patriotic note to the meeting. Seating arrangements and serving of breakfast, lunch and tea added more colour to the program. During lunch the patients interreacted with each other and got a family feeling in the program without any caste, creed, colour, region or religion.
What are your thoughts on the interactive sessions organized at these support Group meetings?
The interactive sessions first with doctors was very educative and encouraging for the patients. The second session provided a new feeling and experience when Viji Amma divided all the participants into four groups for providing their valuable feedback and suggestions for FOM. In the brain storming sessions, the participants had a chance to interact with each other. The program was well organized with full cooperation from Dr. Sanjana Koul, Director, Biotechnology Department, Jammu University. The participation of research students of Biotechnology department added a new colour to the program. They were astonished to see the program and watched the encouraging statements from the patients. They expressed that though they had been studying, this was the first time they had a chance to interact with cancer patients.
3. Do you have any expectations from the future FOM Meeting?
I would like to see more such patient support group meetings held. Even they could be virtual meetings. With more meetings, more patients can be educated about the CML disease and learn how to manage their lives better.
