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Ganga Prem Hospice Patients

INDIA, Haridwar, June 2016
Young Mother in Pain
Suman Kashyapa is a 35 year old mother of four.  She came to GPH crying with pain and beset with worry for her family.

   

Suman’s pretty face was streaked with tears as she came from the oncologist to the palliative care consulting desk. Her husband looked pale and distraught as he looked on helplessly clutching her medical reports in a shaking hand. Suman’s six year old daughteralternated between smiling shyly at the spiritual counselor and looking up gloomily at her mother.

Suman at the GPH palliative care consultation desk
Suman at the GPH palliative care consultation desk

After checking all the symptoms the palliative care doctor gave Suman some medicine and she was taken to a bed where her pain could be monitored.  After an hour when there was still no relief the medication was changed and after another hour she had gained substantial relief.

In the meantime her husband was questioned about their financial situation and advised how he could apply for financial help for palliative treatment. The family income is only Rs 3000 a month and they have borrowed Rs 75,000 which was spent on Suman’s treatment.

Suman was still crying from pain and telling the counsellor that her mother-in- law was not well enough to cook and so her husband was having to do all the work at home.  When he was working at home it was not possible for him to work as a casual labourer which is the family’s only source of income. “He has lost so much weight.” she sobbed, “He is only half the size he was.” Asked if her husband cared for her she replied that he did everything for her and was worried about what the children would do if she died. She says she has apprenticed her two sons aged 10 and 13 as bicycle mechanics. Although they don’t earn anything now at least they will have a trade later, she explained, but she was worried about the two youngest, aged 8 and 6, and wonders who would look after them if she were to die. Suman told the counsellors that both she and her husband believe in God and worship at home but now that she couldn’t always bathe she wasn’t sure how to continue her prayers to the Divine Mother who she believes protects her. She was gently advised on how she could worship even without having her bath.

Suman was put on the Ganga Prem Hospice Home Care programme and visited on the Tuesday after the clinic at her home in Haridwar by the GPH Home Care team. The tiny room where they live has a tin roof and no running water. The team took food rations with them to help the family. On Wednesday Suman and her husband came to the local cancer hospital where Suman’s admission and the start of her chemo therapy was sponsored by the Hospice.

It is often quite difficult to help illiterate families with gaining sponsorship. In Suman’s case we have now discovered that Suman is only her pet name and that her actual name on identity papers is Swapna. GPH staff are trying to solve the resulting difficulties, with the hospital seeming reluctant to change all of the paper work which has already been put in place.  The sponsorship application will also have to be resubmitted: GPH team will help as it is too difficult for the family to manage this alone.

Update 13.7.2016

Ganga Prem Hospice’s supportive neighbour in Rishikesh, the Rajasthani Mishthan Bhandar, kindly donated 25 kg of Rice,  25 kg of wheat flour,  1 ltr of fruit juice,  10 kg of dal and Rs 1100/- cash to the struggling family so at least they will not have to stay hungry for the next month.

Update December 2016

Suman Kashyap, a 35 year old mother of four, suffered from an aggressive sinus cancer that rapidly spread throughout her head and neck. After consulting the oncologist at GPH’s cancer clinic in June 2016, she was added to the home care roster and began receiving regular visits from the palliative care team. Suman and her family shared a single room with a dirt floor, a tin roof and no running water in the city of Haridwar. Her dedicated husband tried his best to understand and implement the doctors’ instructions for her complicated medications, while also juggling his work as a manual laborer and the care of his young children.

In addition to providing regular medical visits, GPH helped the family apply for financial support for palliative treatment though the Hans Foundation, and facilitated donations of food rations, such as rice and wheat. GPH was also able to find a job for one son at the Rajasthani Mishtan Bandar restaurant in Rishikesh, whose proprietor regularly and generously contributes to the hospice cause. Though the son’s salary is small, it is a welcome boon for a family whose total monthly income is only around 4000 rupees ($60 USD.)

 

Suman always had a smile for the GPH team
Suman always had a smile for the GPH team
GPH palliative care doctor with Suman
GPH palliative care doctor with Suman

 

 

Suman’s gradual decline was difficult to witness, even for the seasoned medical team, as her pain increased, her face grew more disfigured, and she became completely bed-ridden. The living conditions at home made her days all the more difficult, and everyone wanted to see her comfortably cared for in a hospice bed. For a time there was hope that perhaps Suman would be among the first few patients to move into the GPH residential hospice where she would receive 24 hour pain management and complete nursing care. In this scenario her young children could also be spared the memory of her suffering. But on Dec.13th she passed away after a final visit from the home care team.

 

Suman’s last bath
Suman’s last bath
Suman’s last meal
Suman’s last meal

 

Two full-time GPH nurses and palliative care specialist Dr. Brenda Ward visited Suman as usual on Dec. 13th, but this time they brought new clothes, a warm shawl, a heavy pink bed sheet and some fragrant soaps and lotions along with the usual medications and wound dressings. With love and kindness they carefully bathed the patient, cleaned her mouth, changed the linen, and dressed her in the new clothes. Through the veil of her pain and weakness, Suman was clearly pleased by the much needed personal care. She slowly joined her palms together in gratitude to the hospice team, and a few hours later she passed away.

INDIA, Haridwar, May 2016
A Child Who Wants to Play
Despite the fact that Reshu is suffering from a brain tumour and is paralysed on her left side she is a typical lively twelve year old who loves to play and dress up.

 

Reshu Saini first came to Ganga Prem Hospice at the Haridwar cancer clinic in April, 2016 but she has endeared herself to the team and has in turn become very fond of them. For a child who until recently spent her days in a small dark room lying alone watching a tiny television screen the advent of a group of people who come especially to see her is something very miraculous. Now Reshu constantly phones Sister Philomena asking her when she is coming. Sister Philomena, who was formerly a pediatric nurse, showers her love on the little girl. When Reshu knows the home care team is coming, she loves to dress up, put lipstick on and pose for photos with the big teddy bear that GPH has given her.

   

Reshu’s mother is a widow who was formerly working in a shop leaving the child alone at home all day however she has recently given up her job as Reshu cannot move about alone anymore. The young girl and her mother live on her mother’s widow’s pension and a tiny income that they get from renting out their second room to a barber. She also has one sister who lives with her grandparents who run a chai stall. 

Reshu with a teddy bear given by GPH
Reshu with a teddy bear given by GPH

Ganga Prem Hospice has sponsored an MRI for Reshu and now it is being decided whether or not any treatment can help her. If any treatment is possible she will need sponsorship as the little family is already hard put to make ends meet.

Update 1.7.2016
 
When the team visited Reshu today she told them it would soon be her birthday. She said ‘ I want a birthday party this time, because it will be my last birthday.’ When the social worker asked her why she said that, she laughed and said ‘ I know what all the doctors are saying. I am going to die, so this will be my last birthday and I want a big one!’ The Hospice team will do what it can to fulfill Reshu’s fun loving wish.

Update 12.7.2016

Following the request of our twelve year old patient for a birthday party to enjoy as she knows it will be her last, the team organised a surprise party at the small home Reshu shares with her mother. Shunned by her friends due to the stigma of cancer, Reshu never the less makes the most of her life and always greets the team with her delightful smile.

She loves dressing up so the obvious choice of gift was a new outfit in her favourite colour, pink. She immediately put it on with the assistance of her mother; her brain tumour has resulted in weakness of her limbs. Her beam ensured all knew she was very pleased with her present.  Gift opening was followed by party snacks and chocolate birthday cake for like most children, Reshu loves chocolate.

 
Reshu blows out the birthday candles
Reshu blows out the birthday candles
GPH team dancing and singing with Reshu
GPH team dancing and singing with Reshu

 
 

Lots of photos were taken by all, including on Reshu's phone, to ensure her 13th birthday is always remembered. Her mother appeared to be delighted with the event.

No party is complete without music. Reshu chose some music and led the group in singing. Everyone particularly enjoyed the track 'Lets party all night!' The group danced together until Reshu was tired. Some beautiful memories were made for all present due to this very special 13 year old.

 



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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