Mumbai Meet Report
7th of Aug – FOM meet at Bombay Hospital.
Mixed feelings – shall I go or give it a miss – I’m new. I don’t know anybody! But the warm invitations the gentle coaxing to attend by one and all from Vijiamma, Gita, Sharon, Melissa and all tipped the scales in favor of attending!
And so a little hesitant, a little shy me was there on time – not knowing what to expect! Just as I entered the hall I was greeted by this beautiful lady with a dazzling smile! Gita came up to me saying “I’m so glad you’ve come – Come have some breakfast”. Well I felt like a “Baaraati”!! After registration and a nice breakfast was introduced to Dr Jude. He too like everyone at Max puts you at ease all at once. After a little chit chat we renewed our pledge to have coffee with Vijiamma at Bandra sometime soon. (I think it was our 3rd such renewal!) Then I went to the hall and sat down. Suddenly heard a very familiar “Hi Bakul aunty how are you?” That was Ayeshah. It was such a pleasure to see her – my introduction to Max was through her! She was the first person I’d met there.
Then the meeting began. Dr Jude in his “CHASTE” Hindi took us through a slide show of Chennai meeting. For those of us who had not attended the meet it was a good chance to see all that happened in Chennai. Looked as though they had lots of fun!! After this thee was this humorous skit presented by “13 yrs old” Pramod and his teacher Nirmesh. The duo very lucidly conveyed to us,”never forget to take Glivec “and brush aside minor irritant side effects of Glivec!
Then began the most absorbing part of the morning session – The Testimonials. Pinakin set the ball rolling with the narration of this story! This opened the flood gates so to say! Patient after patient stood up to tell his STORY, his fears, his experiences, his ignorance of the gravity of his illness, his problems and his trepidations!!! The despair! The hopelessness! The helplessness!
And then they reached Max Foundation!!! The oasis in a desert – the sighting of land to a ship lost at sea!! Here they found Succor, Emotional, Financial, Social , Informational and more!
Mr Garg, Mrs Shukla, Ms Lydia, Hussein Chacha, “Chiknya”, the gentleman from Pune whose daughter had CML all poured out their hearts! None of these were public speakers but how effortlessly they spoke!
As I was listening with rapt attention, Nirmesh softly asked me to tell my story. I stuttered and muttered in protest but Pramod called out my name as the next speaker and so I stood up and managed a few coherent words!!
This presentation was a wonderful way of sharing your problems, your concerns, your fears with fellow sufferers across all strata of life. One got to learn so much from each other’s experiences! For example I thought I had the worst end of the stick where Glivec side effects were concerned – loss of hair, (so painful for women), itchy skin, freckles on the face, painful joints, ACIDITY, upset stomach, nausea, etc. But at the meet I realized everyone suffered from the same and I was no exception! The meet also exorcised a lot of other ghosts from my mind!! (if Mrs Shukla with two major surgeries and eleven years of Glivec is doing so well—I with one major surgery and one year of Glivec certainly have a long way to go! of course God Willing!)
The most important fact that emerged was the Positive Feeling, The never say die spirit of patients and the Determination to overcome.
After lunch began the question answer session with ‘patient’ Dr M B Agarwal! He painstakingly answered all the questions raised. I was surprised by the range of questions—-From side effects of Glivec, dosage schedules, best time to take Glivec to “Root Canal” and Glivec. “Malaria” and Glivec, other illnesses and concurrent administration of Glivec with other medications, social “tipple” and Glivec, etc. were all answered! Questions were asked by one and all – in Hindi, Marathi, English, etc. I remember this shy soft spoken housewife sitting next to me – she asked me “if I ask a question in Marathi will Dr Saheb answer?” I said “sure he will” and so she stood up and asked a very very important Question – Is CML a communicable disease?? Is it contagious?
So you see No Question is either too big or too small to ask. This was a safe and secure platform where patients and their relatives could ask any Question and clear their doubts!
I am so glad I attended the meeting. Days of surfing on the net wouldn’t have given me so much information on Glivec as I gained in that one day! And above all for acquiring a whole new family – the FRIENDS OF MAX
Thank you very much, Max Foundation!