The first ever Virtual Patient Support Group Meeting in Kerala was held on 27th March 2021. Even though it was the first time and majority of the participants were new to the concept of virtual meetings, it became a big event with a strength of 105 participants.
The meeting started with a welcome speech by our dearest Beenachechi from The Max Foundation and all of us were blessed with the darshan of Amma. It was followed by the much awaited panel discussion by veteran oncologists from across the state on “Management of CML/GIST during the COVID 19 Pandemic”, hosted by Sudha ma’am from The Max Foundation. The discussion was very informative and was a guideline for us with the inputs from Dr VP Gangadharan, Dr Narayanan Kutty Warrier, Dr Pavithran and Dr PS Sreedharan.
The Q&A Session with medical experts was the first of its kind for us during the Pandemic and was well moderated by Dr Sajeevan, who made us comfortable with his unique style of asking the very informative and the beautifully compiled queries of the participants by Beena Chechi. In the Q&A session the Expert doctors showered their kindness by answering very common as well as rare topics relating to CML, such as – side effects of Imatinib, the food restrictions, messages to the care givers, monitoring of CML, regarding the family life of patients, views and experiences of our doctors on CML patients and their family and social life, regarding the life improvement of CML/GST patients with the magic bullet, and also how to take precautions against the Pandemic, regarding the Covid vaccine, etc.
Certain changes took place in collecting the medicines, the change from GIPAP programme to MAS programme and its guidelines, the way FOM worked during the lockdown period and how its activities are being managed during the pandemic time, the Do’s and Don’ts while going to collect the medicine – these topics were all well explained by Max’s Programme Officer Beena Narayanan.
Testimonials were shared by Mohan Kumar, VK Mujeeb, Sreelaja, Shaji T, and Chitralekha where the speakers shared the lessons they learnt from having dealt with CML/GIST and Glivec in their lives.
FOM’s Communications Manager Aashray Paul explained about FOM’s social media presence on Twitter, Facebook, LinkedIn, Instagram and Whatsapp, and its aim and the operations, how it is getting updated and the different topics updated every day.
Amma then explained about Chai for Cancer, the fund raiser programme of FOM India- how it is being conducted, the experiences from different parts of the country including the ones conducted in Kozhikode, how the funds are used for improving the life of CML & GIST patients, etc. The programme was concluded by a Vote of Thanks by Sajeevan, FOM Core Group Leader from Kozhikode.
The meeting was a source of confidence for many, also it showed the proper direction to sail in the tough time of the pandemic. There were many first time participants for whom it was a blessing and it was a comfortable platform for all to meet after couple of years
Thanks a lot to the organizers of the event, it was organized in such a way that we did not feeling it was a virtual one. Thanks a lot to Amma, Beenachechi, Sudha and all the Max and FOM members and the doctors for conducting this virtual meeting.