My experience with FOM meetings over the years has been that there is always a surprise element. The meetings are never just about CML and the treatment alone, but also about bonding and discovering something new.
So I must admit I was very excited for the Sunday 19th May meeting as well. We reached the venue sharp at 9 AM (being on time is a rare feat for me, but I also spring a surprise every now and then!). As usual Amma , Ayeshah, Shinu, Komal , Priyanka , Prasad , Philip and the rest of the MAX team were present with their welcoming bright smiles. I am amazed at the energy with which they work; this is what makes the programme so seamless!
At the Registration Desk, I got my Orange name card and my Mom , a Green card. Seeing different colour name cards I instantly knew there is more to expect from this meeting. There were quite a few FOMers already present for the meeting like Kerul and Charita, Nirmesh, Pramod G, Sujeesh, Suresh Pawar and the gang from Pune . Amidst all the Hellos and Hi’s the breakfast was opened and we treated ourselves to a yummy scrumptious Upma and tea. By this time the hall was buzzing with people, and it was time to commence the meeting. The Tata Memorial Hall is spacious and well equipped like any theatre in the city. We were treated to audio visuals of the all previous FOM meeting compiled by Param and Craig and the energetic FOMers from Hyderabad. The background music instantly touched a chord with all of us. I was particularly excited to spot a few Delhi meetings in the video and everybody seemed nostalgic. The new members or people attending meeting first time also got a sneak peek into the world of FOM.
Amma kicked off the meeting with a presentation on FOM, MAX and introduced Barbara and Craig who had come all the way from the Seattle office of The Max Foundation. A fun fact that I found out a day before from Barbara when I met them during the Heritage walk organised for them , was that FOM is a Pioneer. The first patient support meeting was held in India and seeing its success this concept was later replicated across countries. Boy! I was quite touched to hear this; I know how much I have gained from these meetings.
The floor was then given to our very own Bhidu (Nirmesh) and Bhai (Pramod), who never cease to entertain us. But in their friendly banter they give vital information too, like introducing to all the new or 1 year old FOMers to oldies like me , Sangeeta, Dr Jude, Kerul, Charita, Team Pune – Shashikant ji, Yogiraj and family, Abhishek and Amruta Patidhar. By oldies I mean all of us who have been on the programme for more than 3 years. This is very important as it gives the new patients strength and faith that they can have a good quality life too. We have all gone through this initial phase of diagnosis and best way to deal with it is to meet more people touched with CML.
In keeping with the tradition this time too we had a panel of doctors Dr. Manju Sengar from TATA Memorial Hospital and Dr Sailesh Srikhande to take our questions. This was a very interactive session everyone was involved and all the doubts about CML and Glivec were dispelled. Key highlights of the session were:-
1. Compliance to the treatment – We must take our medications in the prescribed dosage.
2. A healthy diet with exercise will go a long way in keeping us hale and hearty.
3. PCR test is important as it helps to gauge the extent of the disease and based on that our treatment can be decided.
These sessions always tend to be a great learning for all of us and are helpful for new and old patients. Keeping this in mind our Bhai and Bhidu reminded all of us that FOM was an India based support group for all the survivors of CML and GIST , regardless of the medication they were taking and that everyone register ourselves as members of FOM . I think this is a great idea as it will bring the entire CML fraternity under one Umbrella and we can reach out to more people, and benefit from this forum.
With this thought we broke for lunch and as Amma promised there was a wonderful surprise awaiting us. The lunch was delicious and amidst the eating and chatting a lot of us signed up with FOM.
The Post lunch session was a Theatre and Drama Therapy activity where we discovered our very own Barbara has been an actor. She shared her experience on acting and also charmed us with her little performance! That is when we realised why we had all been colour coded to Yellow, Blue, Green and Orange.
After a brief presentation on Drama Therapy by Amma , each team was given a dramatic scenario to enact upon the stage . We were given 30 minutes to choose a team leader / Director and the cast and this turned out to be a major bonding session as well. We all saw a side of each other we had never seen before, and I must admit I really enjoyed my acting stint on stage.
Team Yellow presented – A TV debate on the relevance of Valentine’s Day in India – like all TV debates this one had its flavour of Drama, the Aahs and the Boohs. The cast included the TV Anchor and the usual suspects in a TV debate
Team Orange presented – A political party’s office – It was a true representation of the chaos and sloganeering of a political party office complete with a Patriarch, the indifferent campaign managers and corrupt politicians. The act was funny and involved everyone.
Team Blue – IPL 6 Finals – this act had all the flavours the evergreen commentators (Appa) who had a 5 year plan to match fixing and cheerleaders. Again the act was refreshing and tickled our funny bone
Team Green – presented the climax of Dabangg 3, which showed Chulbul Pandey’s triumph over CML too amongst many other things .
Overall, all the teams presented great acts and the fact that it was impromptu made it more fun and as Amma later declared each of us deserved applause for the attempt.
Well, this brought an end to a fun filled day of learning and sharing. We all parted completely rejuvenated and with the Promise that all of us will make FOM a force to reckon with.
Sukanya Lal, FOM Mumbai