February 10-11, 2007
Reported by Subroto Banerjee and Rajat Majumdar
{mosimage} Viji Venkatesh, Head-MaxStation India, came calling to Kolkata for a unique program and a gala get together for all patients in the East on February 10-11. The first was a full day program where volunteers amongst GIPAP recipients and family members met and participated in an interactive session for receiving training as care-givers. In this program the essential virtues and skills for a care giver were discussed through a work shop format and proactive exchange. The idea was to form a core group of volunteers who can compliment the Foundation’s effort to work as care givers for all patients to provide emotional and informational support. Twenty eight of us were present for the program and amongst us were patients, husbands and wives, sisters and brothers, sons and daughters, and even the wife of a GIPAP physician.
Also two foreign delegates came for personal interview of some of the patients. This was part of the Foundation’s effort to increase awareness among the public at large about the passion and commitment with which the Foundation and Novartis are working toward a common goal for the well being of thousands of CML and GIST patients in India and outside.
The workshop began with an “ice breaker” where the participants , with the help of a playing card each received with his / her kit had to identify his / her co King of Hearts or Queen of Diamonds , spend a few minutes with this new partner and then introduce each other to the group based on this interaction . We had some lovely moments , especially when Tapashi sang “Pholon ka Taron ka …..mera Bhaiyya hai” to Neel !!!
We then had to break into colour coded groups , choose our leaders and begin to work on assignments given to us by Viji Amma our facilitator – at the end of the day , after four hectic sessions of discussions and presentations by each of the four team leaders we came up with the following conclusions we would like to share in this report.
WHY DO WE VOLUNTEER
1. TO CREATE AND SHARE AWARENESS
2. TO PROVIDE SUPPORT – IN ALL AREAS
3. TO GIVE BACK TO COMMUNITY
4. FOR GETTING A FEELING OF SATISFACTION
5. TO PROMOTE FOM / TMF/NOVARTIS
6. TO WIDEN CIRCLE OF FRIENDS
COPING WITH CANCER –PATIENT ‘S POINTT OF VIEW
1. SHOCK AND FEAR
2. CONFUSION – WHERE DO I START
3. TREATMENT OPTIONS – RIGHT TRACK?
4. FUNDS
5. CONCERN FOR MY FAMLY AND FUTURE
COPING WITH CANCER – CARE GIVER’S POINT OF VIEW
1. ANXIETY
2. WHERE DO I START
3. DIAGNOSIS – TO FIND THE BEST SERVICE
4. FUNDS AND OTHER RESOURCES
5. ENCOURAGE AS NORMAL AN ENVIRONMENT AS POSSIBLE
COMMUNICATION SKILLS
1. CLARITY OF THOUGHT – BE FOCUSSED
2. KNOWLEDGE OF LOCAL LANGUAGE
3. LISTENNING SKILLS
4. SIMPLE AND EFFECTIVE APPROACH
5. BODY LANGUAGE
6. ELICIT AND RESPECT FEEDBACK
REGIONAL FRIENDS OF MAX MEETING
Prelude
It was a crisp cool day in mid January – Neel had called us for a Volunteer Core Group meeting to plan the BIG one – Victoria Memorial looked beautiful, dazzling and impressive .The gardens appeared majestic and brilliant. The air gently blew carrying the flavor of dew soaked green grass that reminded us of the glory of the past. An ideal place for Valentines in the real sense. Under the blue sky it never looked like a place for serious business. For a moment we all got lost in the cool surroundings. When Neel disclosed that the dates have been finalised , we have to arrange the remaining task – there was a mixed reaction. On one side it was good news, on the other hand the big responsibility to arrange the meet in such a short time. It was like organizing cricket ODI within 10 days from Pune to Eden Garden. Captain Biswas expressed that he would rather go to Kargil or face Court Marshal than accept such a short notice. He said –“My 21 Gun Salute to Amma, but not 21 days for the meet.”
The core group was formed. Tasks were distributed and responsibilities finalized. We ran about for the venues and short listed a few places. In the mean time we received a number of phone calls from Amma, she advised us to fix the venue before doing other things.
Naren said –“there is no choice other than The Calcutta Club for the Volunteer training programme, and to balance the cost we should go for Sujata Sadan for the grand meet.” There was some hesitation among the core group for the Calcutta Club, but this club has the entire infrastructure required and our time was short. The venues were finalized. We met twice to follow up and discuss so that the details could be approved by the group. To make the things simple Captain Biswas explained everything to us in a complicated way.
Naren took the responsibility for the venue and other necessary infrastructure; Neel took the responsibility for distribution of food packets and sustenance for the volunteers.Subir Sen volunteered for flowers and decorations and Gaurav came forward to donate pens, and pads for each attending person in the meet. While the Key chains were promised by Max India office. Of course all this went into beautiful Jute Bags made by Neel with the FOM logo.
THE DAY OF THE MEET DAWNED
Day 2 began with a signature campaign by the Foundation to show their gratitude to Novartis All participants volunteered to leave their signature as a mark of solidarity for the cause that Novartis and the Foundation stand for.
People began converging at the venue from the morning itself and the Registration and Kit Bag team was at work right from that time. Patients and families came from long distances, eager to meet others and share and learn .On stage, after lighting the customary lamp and the presentation about The Max Foundation and Max’s story, patients shared their experience with cancer and praised in volumes the efforts of TMF and Novartis through this wonderful program called GIPAP.
Dr.R.N.Ghosh, a renowned doctor in TMF/GIPAP panel then answered questions from the audience. This was again a unique opportunity for all patients to clarify their doubts and receive sound advice on medical and personal front. Everyone present was immensely benefited from this wonderful direct interaction between the doctor and the patient on this open platform.
The Grand Meet was truly remarkable. It opened up for first timers a totally experience. Everything was so meaningful. We realised that so many GIPAP family members required help and encouragement. They needed hope and care. People coming from remote places wanted support and guidance. The families wanted to know how to protect their loved ones. Amma listened to and touched and reached out to each and every one. It was so fulfilling for all.
“No time is better spent than the time we get to spend with our patient- and how much they teach us, how much of life and it’s vagaries we get to learn from each one!!! Respect and consideration, pride and self devotion , and above all the desire to shield a loved one ……” .
We now know how true these, her words are. When the last question came from Mr. Mukherjee , a father so distressed and anxious for his only son , these lines tell us the real sense and meaning of the day ,- “ I learned what it is that makes a Father – Son relationship so precious….”.
The day ended with a cultural program where patients and their families participated. There was photo session where many of those present were caught posing before the camera. And finally when it was time to say good-bye, there was a great sense of fulfillment and happiness in each of us and everyone took with them wonderful memories of togetherness which no doubt they will be cherishing in their hearts for a very long time to come.
by Subroto Banerjee and Rajat Majumdar