“We have a lot of volunteers; however, the most committed ones are those who themselves are cancer survivors,” says Harmala Gupta of Cansupport. Her observation can also be stretched to prove her own pledge to the cause, which led her to found in Delhi the country's first cancer support group, Cancer Sahyog in 1991, and then its newer avatar Cansupport 15 years ago.
Harmala, now 58, suffered and survived cancer of the lymphatic system at 33, when a young mother pursuing her doctoral studies at McGill University, Montreal (Canada). On returning to India, she found the approach towards the disease and its victims completely the reverse of what she experienced in the West. “There was absolutely no support system for the victims; there was only one belief, that cancer kills,” she recalls. The will to provide a platform to reach out to the victims and their families, “not for the purpose of prognosis but to try and better the quality of life,” formed the genesis of Cansupport.
Her pledge, steadfast as ever, has succeeded in drawing together a clutch of like-minded people along the years, making Cansupport a formidable force in aid of cancer victims today. A proof of it will be there for all to see when hordes of people take to the street this Sunday as part of Cansupport's annual “Walk for Life”. “So far, over 3000 people have registered for the walk,” says a pleased Harmala. The event, she explains, “is importantly to draw attention, to break the silence. It is also to raise funds for the cause and to honour the survivors.”
Having closely observed the state of affairs in India vis-à-vis cancer for the last decade-and-a-half, Harmala has a serious difference of opinion on the very approach to the disease and its patients. “Our doctors' thrust is more on the diagnosis of the disease and less on giving the patient a better quality of life. For them, a patient is often a case, a disease. If the doctors think that your case is beyond repair, they suddenly lose interest in you and all communication stops. Then there are some doctors who don't even tell patients that there is no hope for them and continue to torture them with diagnosis. It often happens in private hospitals. Instead, they should be given a chance to live those days in peace and with their family and do things that they want to do,” she points out.
Drawing from her own experience in Montreal, she recalls the difference, “When I got the news that I had cancer, I was naturally devastated. I felt, why me? I told the doctor, ‘But I am so young!' and the doctor said, ‘What has that got to do with it?'” Her doctor explained to her that she was not the only one to get it. “He also told me that not all cancers kill people. He explained to me in detail what to expect during the diagnosis; I was told to buy a wig at the beginning itself so that I don't need to confront unwanted questions from people when I begin to lose hair later.”
Then came the goodness of palliative care to her aid. “Palliative care is still not well established in India. Only Kerala as a State has adopted palliative care. I feel we should introduce it to patients at an early stage and not when there is no cure. Every cancer patient, whether they get cured finally or not, deals with the question of death and also God and His existence; they ask, what wrong did I do to deserve this. Many undergo depression.”
Taking it as a prerequisite, Cansupport offers free palliative care services. Its homecare service for cancer patients and their families began in 2001. “We have 11 teams now; they not only cover the whole of Delhi but also Faridabad. We have 700 patients under our care referred to us by Government hospitals, as private hospitals continue to keep them in ICUs so that they can make more money,” says Harmala. The home care teams have nurses trained to handle oral morphine. “We have a license to give oral morphine to patients in pain. It took us five years to get it because of an archaic rule,” she says. To spread the service, Cansupport now offers a foundation course in palliative care and also training in oral morphine treatment.
Besides, every Monday, it gathers a group of child cancer patients at its R.K. Puram office “to have fun.” Volunteers spend time with them — sharing stories, playing music, drawing things for them and with them. “I feel child cancer victims are the most tortured ones. Because they are young, doctors and parents don't give up on them; in the process they suffer a lot,” observes Harmala. With 70 per cent of cancer to be found in India and China alone in the coming decade, Harmala is vigilant. “We need to think about it seriously.” And in the frame of things, there should be victims as well as their families. “Families suffer a lot too, so they need to be counselled as well. Keeping this in mind, we have started a bereavement support system,” she says. Her parting shot is worth giving a thought to: “The best way to go forward would be to keep a firm back and a soft front.”
Those who want to take part in the walk can check www.cansupport.org for details.
