Agony of the waiting

There is a strange calmness in the oncology department of government hospitals though it is more crowded that most other sections. Everybody waits. Patiently. The cancer patients have a look of forbearance. Under pale skin, bodily deformities and a range of mixed emotions, there is a marked effort to cope with suffering and hide it from public eye. Attendants look helpless. The physicians seem a little more tolerant than in other departments, a little more sensitive. It is as if everyone has learned to wait under the influence of some strange, overbearing force

Published: Wednesday 15 November 2000

Agony of the waiting

-- Government hospitals in India have a reputation for being noisy places. But there is a noticeable difference if you reach the oncology department. Even if it is more crowded than most other sections, you can sense a strange calm in the Institute Rotary Cancer Hospital of the All India Institute of Medical Sciences ( aiims ), New Delhi.

Everybody waits. Patiently . The cancer patients have a look of forbearance. Under pale skin, bodily deformities and a range of mixed emotions, there is a marked effort to cope with suffering and hide it from public eye. Attendants look helpless. The physicians seem a little more tolerant than in other departments, a little more sensitive. It is as if everyone has learned to wait under the influence of some strange, overbearing force.

This is the burden of cancer. And it shows clearly on the face of Meera Singh Deo, 20. Her sister Savita, 22, had a brain tumour that was surgically removed. She is now undergoing chemotherapy. In the half hour that Meera spent with Down To Earth in the corridors of aiims , she did not once allude to her sibling by her name or as didi , the common denomination for sister. The young woman from Riding village in Singhbhum district of Bihar, bordering on Orissa, constantly referred to her as the "patient". Inside the adjoining room, physicians were injecting potent but measured poisons into Savita's body, hoping to kill the cancer cells.

Even to somebody meeting her for the first time, the impersonal, studied quality of her diction and clinical descriptions seemed unusual for her age. She seemed to have picked up a range of new terms, redefined old meanings and matured quite rapidly. The treatment has been on for the past one year. This is her eighth trip to Delhi with her sister.

After being quizzed repeatedly, the youngest among four siblings reluctantly explained that none of them has got married. Everyone is waiting for Savita to get well -- and no one can say how long that may take. Whether she does get well or no, there will be hardly enough money left for a decent wedding for any of them. Already, this family has incurred expenses of Rs 2,50,000 on treatment. A lot of it has come through loans from friends and family. While the source of income is the same four hectares of land, life will never be the same again.

Yet this family is quite fortunate, if you take the case of Amarnath Tiwari, 29.

On hope, water and Horlicks
His father owns one bigha of land in Kumna village of Chappra district, Bihar, which yields very little. The family earns a living by working in neighbouring fields for foodgrain. In his early teens, faced with an inevitability that innumerable teenagers of Bihar learn to live with, Tiwari began taking the train to Delhi every off-season. He became a porter in the crowded Naya Bazaar area of Delhi's Walled City. The eldest among seven siblings, his parents got him married. He has three daughters now.

In 1992, following all sorts medication in the past five years for hiccups that won't go away, he started having dizzy spells. Weight loss followed. He saw a physician, who instructed him to go to Safdarjung Hospital. From there, he got referred to aiims . The diagnosis was chronic myeloid leukaemia, a blood cancer. Tiwari has no clue that blood cancers are linked, among other things, with polluted air, particularly benzene, which is present in liberal quantities in Delhi's air (see pp 41-47: Environmental injustice ).

That was the beginning. After eight years of chemotherapy peppered with radiotherapy, the only work that he seems likely to find today is that of a scarecrow in the farms of his village. His small eyes are gorged into deep sockets cradled between thin eyebrows, high cheekbones and dark circles; their colour is the most unnerving shade of pink-yellow. The man does not have any inhibitions and comes across as a frank, straightforward narrator. "Whenever an employer would find out about the disease, he'd sack me. I always tried to hide it from them, but it meant that they would expect me to do heavy work. For Rs 1,200 per month, I used to toil for 12 hours a day. Now I have stopped coming here for work. I try to find light labour in my village, and on good days, I earn Rs 50."

He remembers physicians telling him that he should live in hygienic surroundings. Tiwari comes to Delhi every month to receive chemotherapy. He stays in a 2.5 sq metre shanty rented by a relative in Dabri on the western outskirts of the city. When he gets lonely, he's got mosquitoes for company -- a barely two metres away from the room flows a large sewage drain, as testified by strong wafts of fetid air. He pays his relative Rs 800 per month, according to the number of days he has to stay. On days when he has to go to aiims for a check-up or medication, he gets up early and leaves home by six in the morning on an empty stomach. Cooking is impossible when two people sleep; it is either the bedding or the stove. He has to change up to three buses. The one and a half hour journey costs him Rs 18 one way. In the afternoon, he looks for the cheapest meal available around aiims . It usually costs about Rs 10. It's not what the doctor ordered, but it keeps body and soul together.

His monthly expense on medicine is around Rs 2,000. He has already run a debt of a few thousand rupees, and he cannot recall the exact figure. Tiwari could not have been treated but for a grant of Rs 20,000 from the Prime Minister's Relief Fund that the physicians at aiims arranged for him. He can buy medicines and get the bills reimbursed. He can also buy diet supplements like Bournvita and Horlicks. But the relief money does not cover food expenses. His physician has told him that a nourishing diet is essential for his condition to improve.

Tiwari has reached an unresponsive stage of the disease, and the physician gives him about six months. Tiwari dissolves a couple of teaspoons of Horlicks in lukewarm water. Milk is out of reach.

Cancer support groups
With so many poor patients reporting with cancer, one would expect that there would be quite a few patient support groups in Delhi. Not quite, says Manju Dar of the Cancer Patient Aid Association, which helps poor patients in Mumbai, Bangalore, Delhi and Pune by providing free medicines, among other things. "It is very difficult to generate funds for this sort of work in Delhi, unlike Mumbai, where people do come up with money to help cancer patients."

She has a schedule of distributing medicines at three cancer hospitals in Delhi, and if you reach around that time, you will see the number of people waiting for her. But nothing is enough. Down To Earth met several poor patients in both aiims and Safdarjung Hospital who did not know about any way to get free medicines.

Some oncologists, though appreciative of the work of support groups, point out that their effort is largely wasted as the patients cannot take care of the post-treatment requirements, even if they get the medicines. Once a cancer patient, always a cancer patient, they point out. Because apart from the lengthy treatment, the patient has to return for regular check-ups and tests, and there is always the danger of recurrence (see box: Financial drain ).

Physicians mention patients who simply drop out because of treatment fatigue and because they just cannot handle the financial and emotional pressure. These cases just fade away, and are difficult to trace even for the people who treat them.

Jitendra Tuli, communications consultant with the World Health Organisation in New Delhi, is a cancer survivor and the founder of Cancer Sahyog, a support group. He cites examples of extremely poor patients who were deserted by their near and dear ones or those who walk out of their families rather than put them through the nightmare of cancer treatment. "One indicator of how poor people fare with cancer is to check the number of cancer survivors around you. I know quite a few cancer survivors, but hardly any of them are poor people. You can look around and see for yourself."

One place that should be seen is Shanti Avedna Ashram near aiims . A refuge for poor people in terminal stage of cancer, it is run by Christian nuns. The idea is to give them dignity and comfort in their last days. Patients sheltered here have numerous stories of desperation, abandonment by family and dire financial situations. Yet you will also come across cases of families that are not extremely poor but still cannot afford treatment.

An oncologist at the Apollo Hospital, New Delhi, who has handled quite a few paediatric cancer cases, says if the parents of the child are poor, they face a very tough decision. They realise that if they put in everything they have into the treatment of one child, there would probably be nothing left for the rest of the family. And they cannot even be sure if the child will survive. There was a case of a child with leukaemia who died due because the parents could not provide the treatment in time. There are also examples of families have staked out everything to save a child. An oncologist at aiims , when questioned about the limitations of working in a government hospital and the chances of getting a job elsewhere, says she can't even think about making money out of oncology.

In the corridors of aiims stands Omprakash from Chappra, Bihar. He is Delhi for his 17 year old brother's treatment. A relative consoles him, asking him to repose his trust in god. Omprakash can't take it. He flares up: "If there was a god, why would he give a disease like this to poor people like us."

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