Mumbai Patient Group Meet @ 7 May
Report by FOM Volunteer Divya Kumar Jotwani
It all started with an SMS. In the month of April, my phone buzzed with a message for a special invitation. It was the time for the annual gathering where we meet our old friends and meet new faces who have joined the Friends of Max city chapter. The month’s heads up was to make sure that people take time out from their busy schedule and turn up at Tata Memorial Hospital in Parel on 7th May morning. The event marks an annual gathering for all CML and GIST champions.
On the D-day, we reached the familiar venue of Rustom Choksi Auditorium at around 9:15 am and were greeted at the registration desk by very helpful volunteers. The registration took a few seconds and we were given the kit that contained information about the event, newsletter and FAQ sheet. There at a first glance you could see the bustling energy across the hall with the epicenter focused at Amma, Viji Venkatesh, looking more gracious with age like old wine. She greeted everyone individually by their name welcoming them and inviting them for a breakfast which was arranged close by. I am always mesmerized by how Amma can remember so many names of all FOM members and their families but I think that’s how superhumans work. Near the breakfast table there was the familiar mug which echoed the words of ‘Chai for Cancer’. Chai for Cancer is a brilliant non-profit charity initiative started by our very own Amma, in its 4th year of infancy to invite your friends for a tea party also famously known as Chai Adda, and create awareness about CML and GIST along with helping the champions for any help financial or emotional need.
After a brief networking with the regular faces and introduction to new hesitant crowd, it was time at around 10 am where the crowd gathered in the auditorium to commence the event. The hall was full with chatter of people meeting each other and FOM members after long time and in the background there were videos of past events to reminisce on the journey of all of us so far. In about few minutes, Kerul Patel, FOM volunteer took the stage to initiate the ceremony by playing the National Anthem. The whole crowd stood up and joined the chorus to our beautiful ‘Jana Gana Mana’. After the patriotic moment, Kerul introduced us to Ameya Surve from Max team who was the host for the day.
Ameya welcomed us all, outlining the Agenda for the whole day and then moving from there she told us about ‘The Max Foundation’ and for all the new members talked about Maximiliano, the young child who fell victim to CML in 1997. She informed us that Max’s family started this Foundation which helps people to get ‘Glivec’- the Magic Bullet. Imatinib is a compound created by Novartis under the name Glivec, which has changed the life of lakhs of people who are fighting against CML and GIST. Owing to this, these diseases have changed from life threatening diseases to manageable chronic condition with bringing life expectancy to normal. Ameya highlighted a very important point regarding compliance which states to take the medicine regularly as recommended by doctor. Also periodic health checkup, taking medicine on time with precautions stated by oncologist and updating Max team regularly is extremely important so that all champions can live a healthy long life.
After this session, Amma came on stage to express gratitude and during this moment she conveyed the brief sorrow for demise of one of our members, Hira Goma. Amma shared her story of meeting Hira in March, and how she hosted Amma with a satisfying meal. After 2 minutes of solidarity, Amma explained the Chai for Cancer cause and gave a shout out to everyone to conduct such events and bring people together. She stressed on how this cause can help other FOM members to afford health care and checkup which are difficult for them. On this thought, she unveiled the Chai for Cancer amazing t-shirts and other merchandizes by inviting FOM volunteers dressed in those t-shirts. She invited everyone at her home on 14th May for Chai Adda and be part of the cause by donating and enjoying the famous biryani she serves.
During the next segment, Ameya called in to introduce FOM Mumbai City Chapter Leaders, Suresh Pawar and Nirmesh Prakash. The duo spoke about the FOM family and their programs and initiatives. They spoke of the numerous events that have taken place throughout India. They welcomed the 18,000-strong family which is part of this program and who take the benefit of Jadu ki Goli, Imatinib at no cost. Also they stressed on how they partner with city chapters located all across India to make sure all these champions have a point of contact close by. They also spoke about the recent Newsletter which brought in key information about the happenings of FOM, updates on the medical discovery related to CML and GIST along with story of FOM members which connect us to one and all, and continue inspiring us. After that, Bindu Sujeesh spoke about Chai for Cancer initiative.
Then the session which everybody was waiting for began. The Medical Session which was a Q&A with the esteemed panel of Dr Suresh Advani and Dr Manju Sengar was open for the audience members. This session brought out key insights on lot of apprehensions and questions which the members faced in day to day life and were hesitant to ask or did not get time from their doctor owing to their busy schedules. For the next 1 hour 30 minutes the microphone kept running from one end to other with volunteers motivating people to ask all their doubts from medicinal side effects to family planning. People kept pouring their heart out, some sharing their heartwarming stories while other asking advice on their lifestyle habits. This session was a major take away as after the session everyone was convinced that with some precautions and compliance for medicine, champions will scale new heights with Imatinib.
As the time extended, FOM members had to bring the enthusiastic session to next stage and keep rest of questions for networking and during lunch. Later, Vijaya Sundaram from Max team took stage and gave a vote of thanks for everyone’s hard work that went backstage and on stage for planning and executing the event.
With this, the event reached to its half day destination with people being asked to go for sumptuous lunch which was served upstairs in the floor above the hall.
Post lunch sessions were equally interesting. A new segment called ‘Surviving Cancer and Beyond’ was part of the agenda wherein guest speakers Vandana Gupta, founder of V Care Foundation and Rashmi Sachade, FOM City Chapter Leader from Mumbai and a GIST survivor shared their inspiring journey with cancer. The interactive session gave many patients an opportunity to share the feelings on dealing with their cancer. This session was followed by an interactive Quiz which was enjoyed by one and all. It gave us a chance to learn more about the disease through this fun activity. There were 4 teams- Blue, Green, Yellow and Orange with 2 representatives each. Lot of sharing and learning happened and finally the Orange team was declared the winner.
The day ended and everyone bade farewell with a resolve to meet again the next year.