Cancer: Survival of the earnest

Never say die

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.
 
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. The Livestrong Foundation has invited Gupta to join the global debate on cancer at a three-day summit in Dublin, Ireland, later this month, where she will share 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, which confirmed Hodgkin’s. 

Side-effects

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 in 1987 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 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 it,” she says. 

It was in the early 1990s 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. The condition of patients there was appalling. About 50 patients and their caregivers were huddled together in one room. Women were being examined in front of everybody there. It was traumatic for the women to be disrobed for examination. Many women were vomiting. They did not know they could get prosthesis. I arranged for Air India to sponsor sickness bags.”

Gupta and her colleagues then told the cancer surgeon, Dr B M L Kapoor, that while they did not want to interfere, they wanted to help. After four years of visiting the clinic, they decided to set up a home-care programme. It coincided with a pain clinic at the Rotary Cancer Hospital in AIIMS. The anaesthetist at the pain clinic, Dr Abha Saksena, wanted an outreach programme to get feedback from the community. The then Director of AIIMS, Prof P K Dave gave CanSupport its maiden six-month pilot project by giving it permission to visit the homes of six patients in need of palliative care. The results of the free-of-charge intervention were fantastic. The families felt cared for as the CanSupport team visited them every two to three days and addressed questions related to diet and bed care. Explains Gupta, “We succeeded in empowering families to take care of the patients without spending money on a compounder to dress wounds.”

Giant leap

CanSupport was set up in 1995 and registered a year later. It now boasts of 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.