Day-in and day-out, it does not change: we see the same shocked expression from every new patient that has just been told they have cancer. We have seen this face 26,000 times; but for these people, the fear and uncertainty is all too raw. My passion and my pride, is ensuring that by the time they leave our office, they know they are not alone.
—Viji Venkatesh, Region Head for South Asia
All too often, in South Asia, cancer treatment costs become entirely out-of-pocket expenses. Combined with the social stigma cancer carries places great stress on families facing a diagnosis.
The Max Foundation is focused on reaching all South Asia patients who need our guidance and support in navigating the path from diagnosis to treatment. Our collaboration with patient organizations enables patients and caregivers to overcome the stress of a cancer diagnosis and find comfort in community. Through our work, people are able to maximize life following a diagnosis of cancer.
The Max Foundation’s most far-reaching work in India is Friends of Max, our patient support group. Initially put together by Region Head Viji Venkatesh, Friends of Max quickly became a powerful lifeline of peer support. As a recognized Trust with the Charities Commissioner’s Offices in Mumbai and its own Board of Trustees, Friends of Max is one of the largest patient association in the world serving people living with chronic myeloid leukemia and gastrointestinal stromal tumors.
Over the years, The Max Foundation and Friends of Max have covered more than 30 towns and cities, reaching out to patients, caregivers, physicians, and clinical coordinators. Friends of Max is constantly creating, implementing, and upgrading a variety of patient group activities that offer a continuous source of learning and capacity-building.
Drama therapy provides an informal and save space for participants to act out awareness and educational scenarios. Dramatic themes can range from understanding the social and familial implications of a diagnosis to compliance and relationships. Themes aren’t forced to strictly deal with cancer or other illnesses. Instead, scenarios portray coping skills with the power of humour and common sense.
After an introductory presentation to the group, teams are formed, directors chosen, scenarios distributed, and roles assigned. Teams have 30 minutes to create screenplays and draw their scripts. After a few impromptu rehearsals and the skits are ready to be performed!
Through drama therapy, we have seen a storehouse of talent emerge and barriers of rank and file come down as vital messages of awareness, treatment compliance, and compassionate care are conveyed. Drama therapy builds confidence and lasting relationships amongst all participants.
Life’s Colours by Prashant Kumar of Patna, India. Prashant is a caregiver to his mother.
There are many barriers to self-expression, such as the fear of being “discovered” as a cancer patient, the stigma associated with a diagnosis, barriers of language and illiteracy, and fear of public speaking foremost. Our art therapy workshops provide a welcome avenue to patients and their caregivers to work in a medium that allows for anonymity and yet allows them to pour out their feelings and share their experiences.
The structure of the art therapy workshop is very freeform allowing for individual or group processing. Pencils, crayons and paints are put to paper and there is time for each piece to be conceived, created and showcased.
Creations that are born and delivered in just a few hours contain a lifetime of joy and sorrow, hope and anguish, courage and fortitude. and they all speak volumes of the travails the patients and their families have encountered in their long journey and how they have found the means to cope and carry on with their lives ahead of them.
Identifying, training, and retaining volunteers is one of the central aspects of our work in India. The enthusiasm and eagerness found within these patients and caregivers is a powerful resource, and we desire to channel this energy back into the community. Through volunteer training workshops, relevant and appropriate disease-related information is provided and vital training on coping and communication skills as well as all important sessions on how to care for the caregiver. Volunteer training programs are conducted at various meetings held throughout India.
Our goal through volunteer training programs is to encourage people to come together and use their inherent talent as an innovative tool towards self-expression.
Read the latest blog post out of South Asia.