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Ganga Prem Hospice Patients

Dying of Cervical Cancer and Cruelty
An advanced cervix cancer patient is subjected to physical abuse and mental
torture by her family.

Every hour cervical cancer claims the lives of eight women in India. These figures, even though hard-hitting, still do not convey the pain, misery and ostracism that many women have to go through when they are afflicted with the disease. Foul smell, discharge, incontinence, diarrhea, bleeding, swelling and disabling pain are just some of the symptoms that make a cervical cancer patient's life extremely difficult.

In the absence of a supportive family and good medical care, a cervix cancer patient can have to live the last days of her life in inhumane conditions—something that is happening to Sarla Devi (name changed) of Rishikesh.

Suffering from end-stage cervical cancer and an unsuccessful surgery which has left her with urinary incontinence, Sarla Devi has an alcoholic husband and step-sons who add to her misery. Sarla Devi is a heart-wrenching example of how society treats women who are uneducated, do not have economic independence, and do not conform to the society's definition of a "respectable" woman.
Cervix cancer patient Sarla Devi at a GPH cancer clinic

A simple village woman from near Yamunotri, one of the four pilgrimage points in the Himalayas, Sarla Devi's first husband left her for another woman. She lived on a small piece of land in her village till recently, when she met a widower from Rishikesh who offered to be her companion. She left with high hopes for a brighter future.

On migrating to Rishikesh with her new husband, Sarla found that her abusive step-sons would not let her inside the house and forced her to stay outside in a make-shift room on the verandah. Her husband also did not have a regular job but made a living as a drummer and a shaman.

Soon Sarla Devi was diagnosed with cervix cancer. A local doctor operated on her unsuccessfully and in the process, damaged the patient's bladder, leading to urinal incontinence. As the cervix cancer became advanced, bowel incontinence, smelly discharge and intolerable pain added to the patient's misery.

Sarla Devi had now become an unwanted burden to her alcoholic husband. Pain prevented her from pleasing him physically and her prospective medical expenses were an additional cause of his frequent anger.

A volunteer aromatherapist massages Sarla Devi's feet on a home care visit
At this time Sarla Devi was told about Ganga Prem Hospice, which provided her with home care, pain medication, adult diapers, therapeutic massage and above all sympathetic support. The Hospice sponsored all her tests and palliative treatment, which her husband now could not provide. The situation at Sarla's home is so bad that she begs to be given refuge somewhere so that she can die in peace.

Recently, as the Hospice was planning for a twin-colostomy surgery to take care of Sarla's urinary and bowel incontinence problem, her husband disappeared for some days following an argument. Having no other relatives or friends except a sister somewhere in the mountains, Sarla Devi waited anxiously for his return before going ahead with the operation... Then one day she was gone, her room was locked. Her husband had apparently returned but has taken her up to her village. As the Hospice team waits for some news of the patient, they can't help but have heartache knowing how Sarla Devi must be suffering, "condemned" as she is to be without any emotional support, pain relief or medical care.

Sarla's crime: she has cervix cancer.

Update on Sarla Devi (March 2011)

The March 27th cancer clinic of Ganga Prem Hospice brought some cheer to the GPH team as Sarla Devi showed up with her husband, who after having had an argument with her and having taken her away from Rishikesh, brought her back. The patient is still in much pain and needs constant pain-control medication.

The Hospice palliative care counselor Sarojini Murthy spoke firmly to the patient's husband so that he would not protest against his wife's necessary colostomy surgery. Sarojini also requested the Hospice ambulance take the patient to the hospital the very next day to ensure that no more time was lost and that there would be no rethinking on the surgery by the patient’s husband.

Ganga Prem Hospice is sponsoring the patient's palliative treatment and surgery.

Update on Sarla Devi (April 2011)

Sarla Devi’s colostomy surgery was finally done on Sunday, April 10th, 2011 at the Himalayan Institute Hospital Trust in Jolly Grant, Dehradun. The patient’s condition was stable and the fluid retention and swelling in her abdomen had gone down considerably. The Ganga Prem Hospice assistant manager, Vas Verghese Koikara, visited the patient twice after the surgery to check on her well-being. Sarla Devi was conscious in the post-operation ward and had some pain in her upper abdomen. Overall, her condition is stable.

Update on Sarla Devi

Sarla Devi died peacefully in the hospital and her body was burnt on the banks of the Ganga in Rishikesh.

 
 


Cancer in an Impoverished Family

There was literally no roof over Radha Sharma's head.

Living in a hut in the Bahadrabad area of Haridwar, the thirty-eight year old liver and gall bladder patient's family had four mud walls to call their home, with not even a tin roof. The autumn of the patient's life and the seasons saw the hut filled with dry leaves that would fall down from the trees. "What's the point of cleaning the floor when the leaves are going to come again," Radha Sharma's fifteen year old daughter asked the Ganga Prem Hospice nurse.
Home care patient Radha Sharma's home

The Hospice home care team has rarely seen such impoverished living conditions for a cancer patient: no money, no food, no job for the earning member of the family, three teenaged and pre-adolescent children, and the lady of the family stricken with end-stage liver and gall bladder cancer.

Radha Sharma had first come to Ganga Prem Hospice on January 29th in Haridwar. Carried to the clinic in the emergency ambulance service run by the Uttarakhand government, the patient was groaning in pain. The Ganga Prem Hospice oncologist, Dr AK Dewan, saw the patient first of all and made the Hospice ambulance drop her back home, as the emergency ambulance service's job was limited to bringing the patient to the doctor. The Hospice home care team started to visit the patient at her home within a few days, giving her medicines, nutritional supplements, and even food supplies for the family. With medication, the patient's pain was now under control and the jaundiced yellow eyes and skin looked better. The frail family did their best to care for their loved one, tying a sacred thread around her neck to alleviate her suffering and sitting with her, offering their love. The Hospice nurse would take fresh lime from her backyard to make lime juice for
Radha.

Radha Sharma and her teenage daughter
In the last days, Radha could not eat anymore. Lying on her charpoy outside her hut, the nurse's visit would elicit the joining of hands in a namaste from the patient. The day before she died, she stopped speaking. Radha died on the 13th of February, when the skies were overcast with clouds and rain was imminent in the pilgrimage town of Haridwar.

The government-owned vacant piece of land on which the patient's family has built their hut has no electricity or water supply. A few hundred feet away, there is a wealthy locality, whose children often play cricket in the ground next to Radha Sharma's house, not knowing that a life was ebbing away, in sad circumstances, just a few steps away.

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Death Not Wanted in the New House
Superstitions and taboos around death can often cause tremendous problems for terminally ill patients and their families.

In December 2010, one of our home care patients was asked to leave her rented room because the landlord did not want a death in the house, which is comparatively new. The patient, who suffered from advanced breast cancer, had no where to go as there is no room for the dying in India's overcrowded hospitals and hospices are almost unknown in North India. The family was forced therefore to make arrangements for her to return to her remote village in the mountains with only her distraught husband to care for her.

The patient's breast cancer was in need of daily dressings for the foul smelling open wounds which had caused one of her breasts to completely rot away and which had spread to her other breast, back and arm. Towards the end of her life, the patient was no longer able to walk and could only sit day and night hunched over on her bed. The arms were swollen with edema and at times, the swelling on the face would be so much that the patient’s eyes could not see anymore.
The breast cancer patient, hunched over

The Ganga Prem Hospice home care team was providing free care and medicines to this patient. The plans to return to the village meant that the team would no longer be able to carry out home visits due to the long distance to her village.

On the last day of the team's visits the patient was given a supply of medicine and the loving well wishes of the team. The patient was barely conscious and not able to speak anymore. The patient and her husband set off on the 29th of December, but unable to stand the strain of the journey, the unfortunate lady died in the vehicle on the way to her native village. Had there been an in-patient facility she and her family would not have had to suffer so terribly at the end.

 
 

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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