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Ganga Prem Hospice Patients

Baisakhi Devi
...the tourists and the locals going about this business of fun and livelihood respectively, blissfully unaware of the suffering and pain that exists in their midst.

The river-side pilgrimage town of Rishikesh has been abuzz with pilgrims going on the chaar dhaam yatra. As cars, buses and jeeps coming from the sweltering plains of India line the narrow road going up to the Himalayan shrines of Badrinath and Kedarnath, one newly purchased vehicle makes it way down the narrow and very quiet road which branches off the Badrinath highway, to the leprosy colony of Bhrampuri. It is a little colony of small huts, with picturesque green hills all around.

As the vehicle comes to a halt, the passengers are greeted cheerfully by three women sitting outside their huts. Their faces light up with broad smiles as they greet the visitors – a nurse, a driver, and a hospice worker, who have come on a palliative care visit. It is hard to tell at the outset, which among the three women is in need of medical attention, but on a closer look, one can see that one of these very happy women has very thin hair, a temporary side-effect of chemotherapy. The patient’s name is Baisakhi Devi and she has been a resident of the leprosy colony for twenty years, ever since she was afflicted with leprosy and had to come down from her village in the mountains for treatment.

Baisakhi Devi (left) welcomes the nurse (right)
“I’ve been waiting for my friends to come”, Baisakhi Devi says to the nurse. The Ganga Prem Hospice team is led into a small room which has one charpoy and some gunny bags on the floor for chairs. Soon the other two women also come in and sit down as the Hospice nurse asks after the health of Baisakhi Devi who’s suffering from lymph node cancer.

Her smiling face does not betray the fact that a month ago, there was little chance of her survival as her advanced cancer prevented any food intake and put her through unbearable pain. After three rounds of chemotherapy at a Dehradun hospital coupled with the love and support of the Ganga Prem Hospice palliative care team, Baisakhi Devi’s condition has improved considerably. The huge tumour on the right side of her neck has receded and this has allowed the patient to have a semblance of a more normal life. “Everybody has to die, but I’m glad I don’t have to suffer so much pain now”, says the patient. The Hospice team visit is frequently punctuated by hugs and embraces between the patient and the nurse, who meet more like long-lost friends, than as nurse and patient. The nurse checks whether the patient’s protein powder can’s content is seeing a reduction. Her blood pressure and that of one other woman is measured by the nurse who offers to massage Baisakhi’s hair with oil if she wants. The patient explains the throbbing pain that she feels and when the nurse asks her about her symptoms, she affirms that she feels giddy sometimes.

It is the child like innocence of the sixty-five year old woman that endears her to one and all. Baisakhi Devi has no complaints even though for many years she has stayed away from her family, down in Rishikesh in a leprosy colony, deserted by her family and ostracized by the world outside. She has worked hard making rugs out of cotton wool, like the rest of the people in the colony do for a living. Yet, she does not complain.

“I have nothing to give to you, except for my blessings.…”, the patient says to the Hospice team, which was with her as she went through chemotherapy, sponsoring her medical treatment cost, ferrying the patient to the hospital, and draining the pus from her incision wound after biopsy.“My neighbours said I would not survive”, Baisakhi says remembering the time when the lymph node tumour was sucking all life out her.
Baisakhi Devi when she came to GPH the first time

After an hour of animated conversation, the Hospice team is given a warm send off with a gift: corn on the cob. The next day, the Hospice team will be picking up Baisakhi Devi for her trip to the monthly Hospice clinic. As the car winds its way back up the narrow road, the mobile phone starts to pick up the network signals again. The noises of the town resume: the market, the traffic, the tourists and the locals going about this business of fun and livelihood respectively, blissfully unaware of the suffering and pain that exists in their midst.

Baisakhi Devi died on November 6th, 2010

During her last days, Baisakhi Devi was barely in her body anymore, which was perhaps a good thing as she probably could not comprehend her condition.

Having suffered a neurological problem, Baisakhi had lost all control over her movements. For feeding, cleaning and toilet needs, she was completely dependent on her carers who were either her leper colony neighbours and friends, or the Ganga Prem Hospice home care team.

Jamuna, the aya who cared for Baisakhi during her last weeks in hospital.
Baisakshi Devi’s condition took a turn for the worse in the last few weeks of her life. She was admitted to a hospital in Dehradun where a Ganga Prem Hospice-paid carer lived with her as her attendant. When back in her Brahmpuri home in Rishikesh, Baisakhi was visited by the Ganga Prem Hospice palliative care counsellor, Sarojini Murthy, who would hold her hand to let the almost unconscious patient know that she was much loved.

Baisakhi’s yearning for love and human touch was so deep that even in that stage, she would squeeze Sarojiniji’s hand back.

On the night of November 6th, Baisakhi left her body. Her longtime friend and neighbour, the old Moosi Devi, was inconsolable.

On the 7th of November, Baisakhi’s body was cremated by the river Ganga.

Sarojini showers her love on Baisakhi.


Kartik
On looking closer we can see the deformation of one leg which is caused by untreated bone cancer.

Kartik at the GPH cancer clinic in May 2010
Kartik is a lovely looking little boy with beautiful large eyes. He’s playful and affectionate but as he trys to run after the other children he is hampered by a limp. On looking closer we can see the deformation of his right leg which is caused by untreated bone cancer. The cancer has spread to the back portion of Kartik’s little body and he has metastasis in the lungs. Kartik is terminally ill.

He is brought to the Ganga Prem Hospice clinic by his grandparents as his father is mentally challenged and his mother is busy with her eight month old second son. Kartik’s grandfather, the only wage earner in the family, works as a porter at the unfrequented Rishikesh railway staion. The family have spent much of their meagre income on fruitless journies to far off hospitals, cancer centres and alternative therapists.

When the family found Ganga Prem Hospice they received a great deal of solace. Dr Dewan has advised them not to spend any more money searching for a cure and the GPH counsellor, Sarojini Murthy, helps the family to understand the prognosis. Sarojini, Anil Gupta and Sicily Sebastion, the Hospice nurse, make regular visits to the family.
Kartik with his grandparents and Anil Gupta (left)

Kartik has always been afraid of doctors and nurses but the GPH team have made them selves very welcome with the small gifts of sweets and toys which they take on each visit. Pooja Dogra visited many toy shops near her home and told them Kartik’s story. The toys which the shops donated were brought to Rishikesh by Dr Dewan and Pooja, along with medicines and other necessities for the clinic. At the moment Kartik does not suffer too much pain and Ganga Prem Hospice is providing analgesics and Ayurvedic medicine for the itching which he experiences at night as well as nutritional supplements to keep up his strength. The Home Care team will be there to support him and his family as the time may become more difficult in the not too distant future.

Update on Kartik (July 2010)

The roundness of Kartik’s baby face is gone. Three months after Kartik first came to Ganga Prem Hospice, already in the terminal stages of the disease, the four-year old has lost a lot of weight and is growing weaker everyday. His pain symptoms are under control now with paediatric analegesic medications prescribed by the Ganga Prem Hospice oncologist.

Kartik’s bone cancer has metastasized to the lungs and his reports shows that there is big lesion in his right lung. The constantly increasing pain had made the child feverish, irritable and drastically reduce his diet. With analgesics, Kartik is having a less painful time although he does not play so much anymore and mostly lies down.

Kartik with his mother receives the gifts from Anil
The Ganga Prem Hospice volunteers have been visiting Kartik regularly. A friend from Netherlands sent some toys for the child and on a recent visit, Kartik played with the toys that were brought for him. His little eleven-month old brother also likes to join in. The family is sad but is very loving towards the child, taking care of his needs, and reporting his symptoms to the Hospice team for any change in treatment advised by the oncologist.

Little Kartik died of cancer at 2 o'clock on August 4th. He had been slightly out of breath for several days, but spent that morning playing with his toys. After a very light lunch, he was laid on his bed to rest and did not wake from his sleep. The brightness of his big, black eyes had never dimmed. It was hard for anybody to believe that Kartik was dying. So much so that the Hospice volunteer, Anil Gupta, who visited Kartik several times at his home, asked a few days ago, "…but how can he be dying? He's still smiling…"

Looking at Kartik's chest X-rays at the July 25th cancer clinic, our oncologist Dr Dewan had informed the Ganga Prem Hospice team in a subdued voice, "…we may not be able to see Kartik at the next clinic…" When he got to know over the phone that a node had appeared in Kartik's neck, he asked our palliative care counsellor to see the family and explain to them that the end was near.

Dr Dewan is the kind of doctor who continually sees death (and life) at very close quarters, but he exercises caution and rarely pronounces impending death in so many words. In Kartik's case, however, the X-rays clearly showed that his lungs were now completely filled with cancer. That he was still alive, sitting in his mother or grandmother's lap and smiling, was a miracle.

Kartik was all skin and bones and his big, expressive eyes seemed to get even bigger as his face thinned and his strength faded. Even so, being a child, his mind was never tormented with the thought of death. He was happy with his toys and took pleasure in ordering his family to bring him this and that. While showering their love and attention on him, they fulfilled his simple wishes as much as was possible for poor and working people.
Kartik with his toys

Because of his illness, Kartik never started school. His world was his home in Rishikesh and his little body was laid to rest nearby in the waters of the holy river Ganga.

 
 
 

Sadhu Arjun Nath
Sadhu Arjun Nath was one of Ganga Prem Hospice’s terminally ill cancer patients who is remembered by the Hospice team and doctors at the Himalayan Institute as somebody who never complained and always remained peaceful despite his life threatening disease.

Sadhu Arjun Nath first came to the Ganga Prem Hospice clinic in April 2009, with complaints of persistent cough and chest pain. He had been wrongly told by a local doctor that he had Tuberculosis. The fifty four year old destitute sadhu was diagnosed by Dr Dewan as suffering from Bronchogenic Cancer. The disease was already beyond the stage of curative treatment.

Arjun Nath's humble shelter near Lakshman Jhula
With the patient possessing no financial means and having only a makeshift shelter to live in, the responsibility of giving him palliative care and ensuring his general wellbeing was taken on by Ganga Prem Hospice. The patient’s medicines, food, clothing, commuting expenses, palliative radiotherapy and chemotherapy charges were provided for by the Hospice.

Whether Arjun Nath needed to travel to the Himalayan Institute Hospital in Jolly Grant for treatment, or needed to be fed when he was too ill to cook for himself any longer, Sarojini Murthy, the Hospice’s palliative care coordinator, was always there to support him. Arjun Nath, with his simple and non-fussy ways, endeared himself to the doctors at the hospital at Jolly Grant and to the Hospice team. He readily agreed to undergo the five week radiotherapy and chemotherapy sessions and trusted his doctors and carers completely.

During his last days, he openly discussed with Sarojini Murthy what he wanted after he died. He said that no one had to be informed in the event of his death but that if it was possible he would like his fellow sadhus to be given a meal in his memory. When Sarojini asked him if he wanted to be cremated or be given jal samaadhi (where the body is put in the river, as is the custom for Sadhus), he unassumingly left it to Sarojini to decide by saying, “Whatever is convenient for you.” Even in death, Arjun Nath was neither complaining, nor demanding.

The day before he passed away he had expressed a simple wish to eat apples but in the the night before Sarojini could get him some apples, he died of sudden Hemoptysis. On the sixteenth day ceremony of his last rites, fittingly, apples were lovingly distributed by two of Ganga Prem Hospice volunteers, Teri K and Ashley Quinn, both hospice workers from the US.

Sadhu Arjun Nath’s death in his very modest shelter by the road side was quick. For two days before his death, he told a Ganga Prem Hospice volunteer who brought him food cooked by Sarojini, that he was not hungry anymore. He died on the night of 12th December. His death was very sudden and he did not suffer much during his last moments. Arjun Nath had been well cared for during the last nine months of his life, since his advanced lung cancer disease was first diagnosed. During his last days, when it was winter in Rishikesh, the Hospice provided him with blankets and warm clothing so that he could protect himself from the cold even though he lived by the roadside in a very inadequate shelter. Arjun Nath needed inpatient hospice facilities in the final stages, but in the absence of these facilities, the Hospice did its best to ensure he still had some comfort in the form of an assured supply of cooked food, warm clothes, pain relieving medicines, and kind carers to look after him.

During the days following his demise, Sarojini arranged for a lamp to be kept burning in his humble shelter, as is the tradition after the death of a sadhu. One of Arjun Nath’s fellow sadhus was given the necessary supplies so that he could lovingly do this service. On 30th January 2009, the 16th day after Arjun Nath’s death, a bhandaara (traditonal feast) was organised by Ganga Prem Hospice, to honour the patient’s last request.

Poor sadhus eating at Sadhu Arjun Nath's feast

Near to the hut where Arjun Nath lived, the feast was arranged for 35 sadhus, many of who knew Arjun Nath personally. Sarojini Murthy organised the meal and purchased the food the previous day, entrusting the provisions to a sadhu who was a close friend of Arjun Nath. Prayers were held in Arjun Nath’s memory and the food was neatly prepared and set aside for the feast. Apples brought by Ganga Prem Hospice volunteers, Ashley and Teri, were distributed. Some dakshina (ceremonial token money offering to Sadhus) was given to the Sadhus but as there were many more Sadhus ( 63)at the feast than the expected number of invitees, Teri, very generously gave the dakshina to the sadhus who had not been expected

Arjun Nath's photo at the feast given in his memory

 

Sadhu Arjun’s photo decorated with flowers and placed beneath a nearby tree smiled sweetly out at the sadhus enjoying his last gift to them.

 

Madhu's Story
‘She suffered great pain, fever, malnutrition, weakness and inconsolable depression.’

Madhu is a single mother. When she was diagnosed with cancer there was no one to turn to. Her only son, in his early twenties, struggled to earn enough money for her treatment. He is unqualified and could only earn a little wage. He needed to borrow a lot of money to pay the fare to take his mother to the cancer facility far away from their home. More money was needed to stay and eat in a strange town. The cancer treatment was expensive and so they took the minimum treatment - as much as they could afford. They returned home to their debts and, after a little while, to reoccurrence of the cancer, reoccurrence of the need for treatment and reoccurrence of despair.

 
The son faced the dilemma of going to work to pay the debts, the rent, their food, medicine and painkillers for his mother or staying at home to look after her. She suffered great pain, fever, malnutrition, weakness and inconsolable depression. The physical, mental and emotional strain on the mother and son grew in a spiral which, without help, could have only led to a miserable, lonely and painful death for the mother and a life of debt and remorse for the son.

This story, however, changed its course because of the help of the Ganga Prem Hospice palliative care team. Madhu has now been able to have the treatment she needed, the pain killers and medicines she needs, good food, nutritional supplements, supportive home visits and loving care from GPH volunteers. Her son, knowing his mother is cared for, is able to go to work to pay off the bills and debts.

Madhu and her son were lucky. Many aren't. Help is needed to increase palliative care services in India.

A Peaceful End to Four Years of Pain
Just before slipping into the coma she stretched out her arms to Sarojini and said ‘Thank you, thank you’

Madhu Rana was a spirited fighter. Right from the time four years ago when she was diagnosed with cervix cancer, to her last days when despite being gravely ill, she visited the Ganga Prem Hospice cancer clinic to ask her doctors for advise and to thank them for their support. In the one and a half years that the hospice supported her in her treatment and palliative care, the team grew very fond of their 45-year old patient who was often depressed and forlorn but still was tenacious enough to continue to live with cancer for much longer than the doctors had expected her to survive. When Madhu Rana first came to the Ganga Prem Hospice in January 2008, she was extremely undernourished due to her very poor financial condition. Her young son, who was her only family, was struggling to deal with his mother’s illness and expensive medical needs. GPH covered the cost of her treatment and chemotherapy as well as sponsoring her nutritional and other practical needs. The GPH home care volunteers would visit Madhu at home and Madhu and her son, Anil, found support, love and succour with the hospice team.

On 19 May 2009, Madhu left her body. In her last days, Madhu did not suffer much pain, which was a blessing. In the last week her aged mother, a cancer survivor herself, her two brothers, nephews came from their distant homes and joined Anil in caring for her. Madhu and the GPH home care co-ordinator, Sarojini Murthy, had a special bond between them as they had been together during much of Madhu’s terminal illness time. The last three days, Madhu was comatose. Just before slipping into the coma she stretched out her arms to Sarojini and said, ‘Thank you, thank you’ With Sarojini’s guidance, kirtan, prayers and japa were done throughout the last few days to aid Madhu’s peaceful transition. According to Madhu’s wishes, she was cremated in Haridwar, a muktikshetra. After her death, Madhu was adorned in a blue saree, and decorated with kumkum and ornaments . Her cancer-stricken body looked amazingly peaceful as she was laid on a kusha (a grass) bed. The atmosphere was serene and the family carried out all the required rituals which surround death in a Hindu family. Neighbours, including the family of GPH’s first terminal patient, Pushpa Devi, came to pay their respects. Although the members of Madhu’s family appeared on the scene only in her very last days, it was a relief to see that at least in her dying hours, Madhu was given much love, care and prayers. Anil is being supported in his bereavement by Sarojini, Madhavananda and other Ganga Prem Hospice volunteers.

 
 

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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