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Ganga Prem Hospice Patients

Kisan Lal
Dignity in terminal illness

Kisan Lal and his wife live their lives with great grace in their mud-plastered house by the Ganga, in the impoverished locality of Jwalapur, in Haridwar. Living in extreme poverty throughout their lives has not embittered them; it has probably only imbued their personalities with simplicity and gratitude for what they do get.

 
   
The GPH nurse on a home care visit
Mr Sebastion giving supplements to Kisan Lal


Kisan Lal suffers from oesophagus cancer which is in its terminal stages. He earned a living as a labourer till he fell ill. His palliative treatment, medicines and nutritional supplements are being sponsored by Ganga Prem Hospice, whose nurse visits him twice a week. The elderly couple enjoys the visits. A 'khaat' is put out in the courtyard, which has neem trees, drying cow dung cakes and the traditional kitchen, where the stove is made of bricks and plastered with cowdung, which works as an antiseptic.

The financially poor in this area adopt environment-friendly ways out of necessity. The charpoys which they set outside to lie down on are made from recycled material: knitted polythene bags and packaging materials.

Kisan Lal's recycled charpoy - nothing goes to waste
"I am alright now and want to work," says Kisan Lal. His wife adds how he can't sleep at night, thinking about getting back to work. The aspiration is simple: Kisan Lal wants to run a tea-vending cart nearby. Some kerosene oil, some tea leaves and a stove is all he wants. For a man who is perhaps unlettered, Kisan Lal astonishes everybody by talking about the former prime ministers of India and remembering their long names correctly.

Kisan Lal's palliative treatment at a Dehradun cancer hospital will start again after a few weeks. He has little sign of discomfort now apart from a mild pain in his throat. The fact that he is weak, however, is evident from looking at his thin arms as the Ganga Prem Hospice nurse measures his blood pressure.

The couple have no children. Kisan Lal's wife smiles very easily and has an open heart. "I find it hard to wash clothes due to the arthritis problem, but a doctor treated me. May his children live long," she says.

Sometimes the couple have little to eat. Kisan Lal's desire to have milk and rice pudding at Divali was going unfulfilled till the Hospice driver gave him two hundred rupees so that the couple could have a treat for the festival.

The Hospice team leaves Kisan Lal's home, and the couple comes to see them off with folded hands in a display of thankfulness and humility, which is in fact a sign of their generous character.

Kisan Lal bids the home care team farewell

Kisan Lal died on February 20th, 2011

Kisan Lal, the sixty-year old oesophagus cancer patient, died on February 20th, 2011. The patient and his wife, a childless couple living in Haridwar, could hardly make ends meet or afford any kind of medical treatment. In his last days, Kisan Lal was all skin and bones. Barely able to get up from his bed, unable to speak, eat or drink, his face was all swollen due to the progressive state of the cancer.

His wife took him to his native village near Roorkee for three weeks where the patient’s condition worsened in the absence of palliative care. On the couple’s return to Haridwar, the Ganga Prem Hospice nurse reported with distress the very grave condition of the patient who had also developed a bedsore. The patient was given palliative medicine to make his remaining time less uncomfortable. A day later Kisan Lal passed away, leaving his wife who is herself ageing. In the absence of any means of earning a livelihood, companionship and support, she is likely to face a very difficult time ahead.

There is no social security for such marginalised people who have to suffer the double blow of losing their loved ones to an exacting disease like cancer, and being left without any financial support whatsoever.

Gulfam Ali
Living in the end stages of cancer

A flight of stairs lead up to the very Spartan living quarters of a large family in the Jwalapur area of Haridwar. In a room that has but three cots, the only sign of adornment are verses written in Urdu and photographs of shrines. A small table cluttered with medicines shows that a patient lives here—the forty year-old lung cancer patient Gulfam Ali. His disease being in the the last stages, the cancer has ravaged Gulfam’s body, appearing on the right side of his face and neck as an open tumour.

Seeing that the nurse who has been making home visits has come, Gulfam sits up and holds the right side of his head, indicating that he is in terrible pain. The tumour has all but clamped his jaws shut. It’s too painful to speak.

Gulfam's tumour, seen here as a puss-ridden wound, prevents him from speaking
As Gulfam Ali takes away the dressing from his face, it becomes evident why the mood in the house is so sombre. A big puss-ridden wound on the neck and the cheek stares at everybody. Gulfam’s young and pretty wife explains in colloquial Hindi that the wound has a discharge. With illness and death hanging in the air, the financially impoverished family is still much composed and accepting of the sorrow. A quality that the poor and less fortunate people in India almost always have.

Gulfam prefers to do the dressing on his own. He holds a mirror and works away at his wound. “He’s afraid to let me do the dressing because it would hurt, but the puss really needs to come out, even if it means bearing some pain,” explains the Ganga Prem Hospice nurse to Gulfam’s wife.

Gulfam is one of the several sons in the family. He lost his job when he fell ill with lung cancer. The already poor family has few sources of income and cancer treatment has further added to their woes. The family members and well-wishers soon come to check on the patient, innocently asking the nurse to give some medicine which would make the mouth open. They also speak to the Hospice driver, who is more like a friend to the male members of the family.
GPH nurse Sicily Sebastion on a home visit, explaining to Gulfam's wife how his wound must be cleaned

Even with such an end-stage disease, Gulfam is still holding out rather well. Perhaps because his forty year old body is still young and has some reserves of energy. If he is angry inside, he does not show it. His hair has greyed though. Gulfam Ali’s wife cares for him lovingly. The nurse gives her the sterilized dressing and explains to her how the unused dressings have to be kept untouched.

It is not a happy situation, but the Ganga Prem Hospice team of the nurse, driver and co-ordinator are more than welcome, being treated to tea, biscuits, some salty savouries and even sweets.

Dr Goel examining Gulfam Ali at the GPH cancer clinic
The Hospice team departs with a heavy heart. It’s a sad feeling when there is so much suffering. The task of handling dying patients all the time seems onerous. The conditions are not so comfortable either: a long journey, uncomfortably warm weather and the difficult job of emotionally supporting not only the paitent but also the family.

The silver lining however is that the patients and their families are happy or at least welcoming. Gulfam Ali’s father comes down the stairs to see the team off. The care, medicines and a helping hand mean so much.

Gulfam Ali died on October 25th, 2010

Gulfam Ali passed away on the night of October 25th in Haridwar. His lung and oral cancer condition was at its last stage. In the end, Gulfam Ali suffered from excessive cough and phlegm, and on the night he died he was moved to a nearby clinic where he was put on oxygen to alleviate his laboured breathing. He later collapsed at the clinic, after which he left his body.

During his last few hours, Gulfam Ali was speaking lovingly to his family members, although his parents were away from home on a pilgrimage to pray for his recovery.

Gulfam is survived by his wife, three daughters and a son.

Neema
Battling with liver cancer - as a widow and an impoverished mother of three

Thirty four year old Neema is a young widow living in Rishikesh. Her lack of family support and her impoverished financial situation are not the only things that have gone wrong for her. Neema suffers from progressive liver cancer and there was a time not so long ago when her condition was considered terminal.
Neema at the Ganga Prem Hospice clinic

However, Neema has continued to live a near normal life. Some consider it a miracle. The oncologists however attribute the ‘longevity’ to a rare neuro-endocrine liver cancer which progresses very slowly.

Neema lives near Laxman Jhula, and can see the river Ganga flow by from her rooftop. Her home is a room in a school building run by an activist who has taken good care of her, giving her odd jobs to do in the school like taking care of children, sweeping the floors and cooking to earn a living and to keep herself occupied. The little school children and two big friendly dogs are her constant companions.

Says Sarojini Murthy, the Ganga Prem Hospice palliative care counselor, “Neema is on her feet. On one occasion, I saw her at Swargashram taking the school children out for a picnic. She gave me a radiant smile and chatted”.

Neema has seen worse times. As a young widow, her family from Devprayag deserted her, leaving her to look after her two daughters and a son. The little family soon disintegrated with Neema earning living as a tea vendor in the touristy Laxman Jhula area and later going to the Shivananda home as a patient inmate. Her son was taken by a relative to bring up, and the two daughters left on their own. Now Neema's health has improved and she is back with her two daughters but a shadow comes over her face when she thinks of her older teenaged daughter who has become a rebel and dislikes being in the school where she is being sponsored for her education. Neema's main and constant worry is the future of her children.

Neema is being supported by the Ganga Prem Hospice home care programme. The Hospice nurse visits her every few days to check on her medical condition, to listen to her worries and console her as much as possible.

 
 

PATIENT'S STORIES
Cancer patients and their loved ones are invited to write to us about their views, thoughts and feelings. We will include as many letters, articles and stories as is possible in these web pages.

Please send your article to Nani Ma at nanima@gangapremhospice.org.

 
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