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A P Regional Meet

A P Regional Meet
6th September 2009
Hyderabad

With the sudden demise of our CM Late Y S Rajashekar Reddy, confusion prevailed even till two days earlier whether to go ahead with the meeting at all. However with the city returning to normalcy, Hyderabad FOM managed to hold the Andhra Pradesh Regional meet on 6th September.

Monsoons had been lashing the city pretty mercilessly over the past couple of weeks. Thankfully the rain gods held on that morning and it was a clear and bright day. The venue – Ravindra Bharati  – the prestigious auditorium was bustling with activity right from early morning. Hyderabad Core group members, Viji, Beena and Geeta were the first to arrive and got busy with arrangements right away – Banners were being put up, stage arrangements were being taken care of, give away bags were being stacked and badges were being prepared.
 
Long queues of people started  forming at the registration counters from 7.30am itself. There were many first-timers with puzzled looks on their faces not knowing what to expect. Refreshments were arranged for many who had arrived (straight from the railway station) from the remotest of towns/villages hundreds of miles away.  We had a great turnout of around 450 people.
 
The day’s program got underway at 9.30am with a Welcome speech by Usha and Adishri. A two minute silence was observed by everyone as a mark of respect to our late CM. This was followed by a brief presentation on CML by our new member Subba Rao. He started by outlining the biology of CML and even though his talk was somewhat technical he made great efforts to help the audience understand.
 
A peaceful mind and a positive attitude are mandatory for people undergoing any treatment. Hence next on the schedule was a Meditation workshop by the Brahma Kumaris which lasted for 40 minutes. Throughout the session Anjali behen focused on the concept of loving one self and the need to consider ourselves a ‘Yogi” and not a “Rogi”. She captivated everyone’s attention and the open-eyed meditation technique, with soothing music playing in the background, was indeed very relaxing and enlightening experience for all.
 
It was time for Viji to take over the stage. After introducing herself and the Max team, she went about her usual presentation on Max Foundation, Novartis and Friends of Max. For the benefit of the Telugu audience, the gist of the presentation was translated into Telugu by Gita. Dr.Raghunath Rao was invited on the dias to talk about  compliance and adherence to treatment. He emphasized the importance of taking Gleevec on a daily basis as per advised dosage and monitoring response to the therapy for best clinical management of CML patients.  He also very patiently went over the whole process of the program for the benefit of all the people present so there would be greater understanding and appreciation.
 
With the monster of Swine-flu looming large across the world, Dr Srinivas’ brief presentation on creating awareness about the Virus was very timely. CARE Hospital authorities, responding to FOM Dr Raghu’s request supplied over 500 masks for all the participants
 
What followed next was the most eagerly awaited Doctors Panel Discussion, which was well coordinated by our dear friends Dr Raghu and Subba Rao. It was really cool to hear so many bright and inquisitive questions asked from the audience. Drs Raghunadrao, Shivanand, Krishna Mohan (all from NIMS) and Dr SVSS Prasad (from Apollo Hospitals) – everyone took turns to answer queries. The bottom-line – Take your medicine without fail, Go for regular check-ups, Don’t Smoke and Alcohol is an absolute NO NO! When questions regarding family matters and marriages cropped up both Dr Raghundahrao and Dr Prasad also emphasized on the importance of not ever hiding the diagnosis but sharing it .Occasional cracks were made by doctors in response to certain questions which had everyone burst into laughter. As it was time to close the session, Beena presented the doctors with mementos and Viji thanked the doctors, who so readily help patients and bring hope and
reassurance to many.

Patient Experiences:
 
The post lunch session was reserved for patient testimonials. Samantha initiated the session with a brief narration of her 14 year CML journey, so that the newly diagnosed would be inspired by her courage and spirit. Armaan and his mother Parveen shared how devastated they felt initially and 5 years on their return to a normal life. An elderly lady Mrs Lata garu spoke about how if it were not for Max Foundation she wouldn’t be alive today to share this moment with everyone. Thereafter, no one needed any invitation – they just poured onto the stage to share their experiences. Majority of them hailed from very poor backgrounds, remote villages which did not even have a proper hospital to speak of. Each one began with a shaky voice that became stronger with each sentence, as they talked about their individual experiences in overcoming financial, emotional and most importantly geographical challenges.
 
Vijayalakshmi, a daily wage worker, thanked Glivec and Novartis, and Dr Raghunadrao for giving her money to purchase a sewing machine, which helped her earn her living and take care of her family. Kanaka Durga, a 26 year old childless lady, talked about her husband’s shock diagnosis while undergoing fertility tests.  A husband spoke about his despair at the thought of his sick wife not being able to give him a son (‘waris’) – he had even taken an insurance policy on her name expecting her to die –  her subsequent treatment with Glivec courtesy Novartis, and how they were blessed by a healthy child. Another heartening story was that of Koteshwar Rao, a social worker from Vizag, as he recounted his 10 year journey with CML, about how he was initially ostracized by his friends and neighbours, his financial and physical trauma of coping with disease, his family, how he overcame all hurdles and ultimately got enrolled in GIPAP. Everyone expressed
their gratitude towards GIPAP, Max Foundation, Novartis and the Doctors for coming to their rescue and giving them a second chance at life – and each time there would be a huge applause from the audience. The auditorium was emotionally charged as all of us could to relate to the experiences. Those who could not get a chance to speak gathered backstage and stood gratefully with folded arms (doing Namaskar) in front of Viji Amma, some hugged her, some even fell at her feet.
 
We had to cut short the program as it was nearing 4pm and time for us to vacate the hall. Beena gave a Vote of Thanks and extended an invitation to everyone for the Chennai All India Meet 2010. Dr Raghu gave a vote of special thanks to Novartis and their unique GIPAP program. He thanked all for making the effort to come all the way and making this meeting a huge success. Members were encouraged to volunteer to be hosts in their local community and help other CML patients.  
 
Thus ended the day. FOM Hyderabad’s ambitious venture to hold its first AP Regional meet was a success beyond all expectations. Core group members – you all deserve a big pat on your back for your enthusiastic participation! Our heartfelt thanks to Care hospital staff and Subba Rao’s colleagues – without their help we could not have managed the show. And last but not least our guys deserve special thanks – Dr Raghu, Vicky, and especially Superman Pramod and Subba Rao – Thankyou from the bottom of our hearts for your tireless efforts in working out the logistics for the day’s program. And Viji, Beena and Gita – it was a pleasure to meet you after so long and spending time with you. As everyone would agree, it was difficult to say Goodbye! However, as we all said our goodbyes, each one of us was rewarded with a warm ‘Jaadu ki jhappi’ by Viji………
 
Till we meet again,
Sailaja, Hyderabad

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