Patient Support Group Meeting for Young CML & GIST survivors – Jaipur (20th September 2019)

The Max Foundation & Friends of Max in association with Teenage and Young Adult Cancer Foundation organised Patient Support Group Meeting for CML & GIST patients in the age group of 13 – 34 years in Jaipur on 20th September. This meeting was a part of the annual conference of TYACAN and its intent was to spread awareness in all aspects – about the disease, treatments, living a normal life even with the disease and various support programs across India.

Dr. Lalit Mohan Sharma’s presentation simplified the understanding of the disease and cleared misconceptions and general fear. The informative visuals were extremely helpful in making the audience understand the basics.Mr. Pankaj Kumar explained about treatment adherence and how to live a normal life with CML, every single day.

Mr. Ajay Yadav focused on how to monitor the disease and the importance of doing so on a regular basis. He also stressed upon the necessity of sharing everything with the doctors so the doctors can provide guidance and necessary treatment to help overcome issues and side effects. Our most loved Viji Amma shared details about CML & GIST Support Program in India . She was very clear, informative and helpful.

Dr. Hemant Malhotra, Dr. Purvish Parikh, Dr. Prakash Chitalkar, Dr. Ajay Yadav, Dr. Naveen Gupta held an interactive session with the patients, while answering their questions in a most detailed manner. They explained what doctors expect from patients, the kind of physical and psychological challenges that could possibly come along the way and how to overcome those obstacles and march ahead. This was helpful for patients and caregivers alike and helped alleviate their anxiety and stress to a great extent.

The survivor’s sessions in the second half of the day was most emotional and inspiring. People shared about their fight with CML, their experiences, their journey. It seemed to spread a message that no one is alone in this fight or what they go through and that they don’t have to go through it alone. Interaction regarding celebrity survivors was very uplifting and boosted morale of many present.

One such presentation that stood out was that of Captain Ritu Biyani, who has traversed the length and breadth of the country, all alone, without any male help or support, to raise awareness about Breast Cancer in the most rural areas. Her zealous enthusiasm to help and make a difference is commendable and inspiring. The message of winning over fear was simple yet profound. We feel blessed and grateful to have such dedication around us to do something for the greater good of society.

Viji Amma also conducted drama therapy workshop in which she invited physicians, patient advocates and volunteers to enact a scenario based on Tobacco Awareness and its harmful impact on Teenagers and Young Adults. With participants excellent performance, it was indeed the highlight of the day!

At the end of the session our own Amma was felicitated by organisers of Teenage and Young Adult Cancer Foundation with a ceremonial shawl and Rajasthani saafa. It was an extremely proud moment for us.

The entire conference was very well planned and executed, informative and of course motivating. It helped in lifting up the spirits, overcome fears and spread the message that no one is alone in this fight. 

Report by Shaila Bhandari

FOM City Chapter Leader, Rajasthan