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From being a cancer survivor to the founder of NGO
CanSupport, Harmala Gupta Harmala Gupta's name has come to be closely connected with dignified cancer care in India. From being a cancer survivor to the founder of CanSupport, a non-government organisation providing assistance to cancer survivors, her journey has been a long and challenging one.
Today, Gupta's efforts to improve the lives of patients through home-based counselling and palliative care have earned her recognition in India and abroad. Livestrong Foundation recently invited Gupta to join the global debate on cancer at a three-day summit in Dublin, Ireland, where she shared the platform with world leaders and prominent persons, including American Senator John Kerry, Dr Christopher P. Wild, Director of the International Agency for Research on Cancer, and the Health Ministers of Argentina, Belgium, Ireland, Mexico and Vietnam. In her mid-fifties, Gupta derives immense satisfaction in serving cancer patients of all age groups and classes. A poster in her New Delhi office draws attention to the aphorism about learning to accept things that cannot be changed. Perhaps, Gupta allowed this philosophy to guide her in accepting her diagnosis. Two decades have gone by since Gupta was first diagnosed with cancer. She was at the threshold of a promising academic career in 1985, pursuing a doctorate in Chinese politics at Montreal's (Canada) McGill University when she fell sick with symptoms like chronic fatigue, weight loss and severe back pain. Medical consultations and tests followed. The trauma lasted until a thoracic surgeon at the hospital suggested an open biopsy. The doctors went ahead with a frozen biopsy that confirmed lymphoma. Confusion over the nature of the lymphoma made them refer her to Princess Margaret Hospital in Toronto. Treatment entailed six cycles of chemotherapy followed by a month of radiotherapy. "I had terrible side-effects, unbearable nausea and complete hair loss. The treatment lasted eight months and my husband and I returned to India with medical advice for periodic check-ups," she recalls. Two years later, when Gupta returned to Princess Margaret Hospital for a review, the doctors found a patch on the left lung and did an open biopsy, fearing the cancer had recurred. It was later ruled out. Even now, Gupta can distinctly recall what it was to face death at the age of 32 with a three-year-old son to look after. "When I came back, it took me almost two to three years to stabilise myself emotionally. I wanted to spend more time with my family. I heeded the advice of doctors to build up my vitality and take it easy as I had to face death prematurely," she says. Gupta says that every cancer patient has a Damocles’ sword hanging on his/her head as the disease can recur any time. But the last 22 years have only strengthened her resilience. "I have to be careful as I had been exposed to radiation during the treatment. Radiation is a double-edged weapon, and I have been advised a regular mammogram. Once a year, I go for a mammogram," she says. It was in the nineties that she decided to set up a cancer support group after observing the deficient healthcare conditions at New Delhi's premier All India Institute of Medical Sciences (AIIMS). "You need a lot of psycho-social support. In Canada, I had been attending support group meetings of cancer patients as also of those who had recovered. It was really heartening to interact with people who had been completely cured. When I came back, I found that missing here. In India, cancer meant stigma. I wondered how is it that I never met a cancer survivor here. Then, I began getting anonymous calls from caregivers, who had a cancer patient in the family. I managed to bring together six people, including four women whose lives had been devastated by the disease. "We started visiting the breast cancer clinic at AIIMS, held once a week. The condition of patients there was appalling. About 50 patients and their caregivers were huddled together in one room. They had no privacy. Women were being examined in front of everybody there. For the doctors, it was only a clinical examination but for the women it was traumatic not only to fight the disease but also to be disrobed for examination. Many women were vomiting. They did not know that they could get prosthesis. I arranged for Air India to sponsor sickness bags." CanSupport has a staff of 41, which includes 10 teams of medical professionals that visit terminally ill patients in their homes in and around Delhi. "We now have referrals from all the cancer hospitals in the city. A majority of them come from government hospitals. Our teams offer symptomatic relief, psychosocial support, practical advice, train caregivers, provide drugs, spiritual comfort and grief counselling," Gupta elaborates. CanSupport has a helpline (011-26711212) that operates Monday to Friday, 9.30 am to 5.30 pm. It also runs a daycare centre in RK Puram for children and adults undergoing cancer treatment at AIIMS. Over a period of 12 years, CanSupport has attended to 10,000 patients in addition to their family members. It offers services in the National Capital Region and will soon start its services in Ghaziabad. Says Gupta: " We want to start a national network called Friends of CanSupport to create awareness in the community. Our ultimate goal is to create a world where cancer patients don't feel stigmatised and isolated." Funds for all this good work are coming from individuals, trusts and foundations and corporate houses. "The major source continues to be individuals whose lives have been touched by cancer, or foundations which have a commitment to health," she says. Gupta is happy that her
advocacy, as also that of the Indian Association of Palliative Care,
has finally persuaded policy makers in the Health Ministry to include
palliative care as part of the National Cancer Control Programme. As a
cancer survivor, she has been able to make a difference to the lives
of innumerable others who have experienced a similar trauma. — WFS
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