Patient Stories

A 7 year old charming girl life was happily passing with her parents and a brother, who used to help mother in household work. Suddenly, in January 2022 her life has turned topsyturvy. Initially it started with uncontrolled fever and vomiting, seen at a local hospital, they referred to a higher centre. It was difficult situation to the parents who were financially weak background. Finally after running from pillar to post, the child was diagnosed with Tuberculosis, Meningitis and treated in Osmaina and Nioufer children’s hospital. As the child was suffering with pain and other retractable symptoms, she was referred child to our Hospice for symptom management by our team in Niloufer Hospital. Mother went into a deep depression and had lot of spiritual distress with hardly any support from the family. The father meanwhile married the mother’s sister and started neglecting the child. Out staff in the hospice addressed all the symptoms in a holistic manner and succeeded in reliving the child of pain and also in counselling the mother to come to terms with the situation that the child’s disease had landed her in. The mother who expressed suicidal intentions on seeing the suffering of her child and also going through the trauma of her husband abandoning her for her own sister, presented a picture of despair and anguish. Repeated sessions of counselling were required to bring about a semblance of normalsy in her. Our medical team meanwhile saw to it that the child was free from pain and is comfortable. Our counselors also are helping the sibling of this child who had dropped out from school continuing his education.

This is a story of a 50 year old man who used to run a small juice centre until he was diagnosed with lung cancer. Apart from cancer, this man also separated from his wife and 2 children due to personal issues. and stayed along with his friends. He was a very active, energetic man very fond of listening to music till the time of diagnosis. Initially the patient complained of chest pain, cough and shortness f breadth. As the disease progressed he developed massive pleural effusion and was admitted in NIMS hospital. As he could not continue further cancer treatment due to financial constraints and lack of family support, he was referred to our hospice. We provided him with a caregiver and also immediately started treating the symptoms of pain, shortness of breadth and severe lymphedema. Our counselors started counselling him and made him aware of the prognosis. Initially, he was very depressed, upset and withdrawn and was also suffering from guilt for his negative qualities which he blamed as the reason for the disease. He gave up on life and was waiting for the ultimate to happen. Our counselors over multiple sessions managed to make him come out of his depression and he expressed his thoughts, concerns, fears and wishes. Eventually, we made him meet his estranged family and also his old acquaintances and friends. We also arranged a trip for him to the place where he ran his juice centre. After spending 84 days in our hospice, we finally breathe his last in a very peaceful manner. This was a classic case where a palliative care team addressed all the dimensions of pain ( physical, emotional, spiritual and psychological ) and succeeded in providing the best of palliative and end of life care.

A 17 year old adolescent boy by name Kumar ( name changed) ailing from the family of barbers in a district town was also pursuing the studies and his dreams of leaving the town graduating from the college and upgrading his life, but fate said otherwise and was diagnosed with osteosarcoma. He was brought to city for treatment, gradually cancer spread. He and his mother ended up in our hospice. The boy lost his ability to walk and became bedridden and leg had to be amputated. Even while his mother was looking after him day and night in our hospice the father took to alcohol to get over the trauma. While the mother and son were in the hospice, his elder sister delivered a baby whom Kumar wanted to visit. We arranged a visit in our vehicle to fulfill his last wish. The mother was under severe pressure from her daughters in laws who were not able to appreciate the condition she was in. Her story is too heart wrenching even to put it in words. Our counselors did their best but, whether she will eventually overcome her grief and live a normal life is difficult to say.

Mrs. Shivani ( name changed), a 23 year old recently married, with a 6 month baby boy was referred to our hospice by the cities leading pulmonologist with a rare progressive lung disease which has no cure. Husband works in the city police force as a constable and was the principal caregiver. Shivani shared her innermost grief and concerns with our counselor, that she knew she was dying, but wanted both her husband and child to be with her and spend last few days with them. But unfortunately that did not happen. Her in laws took away the child with every passing day her husband also began to distance himself from her. These sequence of events caused her more grief and suffering than her eminent death itself. Her desire to experience a little show up for love and affection from her husband remained unfulfilled. Our conselor at least shared her sadness and probably lessened the burden on this young women who eventually passed away.

This is a story of a 45 years old doctor Suchi ( name changed) working in the Government sector got admitted into our hospice after an unsuccessful prolonged cancer treatment for tongue cancer extending over 4 years. She appeared to be a demanding and authoritative person and due to her appearance asserted herself to avail of all our palliative care services. Initially she would express her anger on our staff and get whatever she wanted. As the days went by her condition deteriorated and became weak. She was being looked after by her husband who works in the software sector. One day, in a reflective mood she narrated her story to our counselor. She had fallen in her youth and married against her parents wishes and moved to Hyderabad from the north. As the years went by the couple developed differences which eventually resulted in separation. She admitted to our counselor that her authoritative and dominating nature was a big reason for the separation. By the time she was diagnosed with Cancer Tongue there was nobody to look forward to for help. Her ex-husband came to know of her diagnosis and came back into life. Her biggest solace in the days of distress was the fact that her husband was not only back with her but was caring for her in every need. Thanks to the companionship that she found with counselor in the life that she could share her inner most feelings . Being an educated person, she had come to terms with the fact that she would soon die. We ensured that her end was peaceful and pain free. Her estranged husband came back into her life in the last one month she spent in our hospice and was at her side till she breathed her last. Her last words to our counselor was that her husband needed much more counselling to get over the grief than herself.

An emaciated female Mrs. M aged about 40 years was brought to the Government Cancer Hospital, Hyderabad and abandoned in the premises. The patient who was semi-clad with bones sticking out and half conscious was referred to our hospice for treatment and care. She was transported in our ambulance to the hospice where the doctor and nurses washed and cleaned her, including removal of maggots from her wound around the breast. She was properly clothed and fed. It appeared that, she was an advanced stage cancer patient (of the breast) who was deprived of proper treatment and neglected by her family. After a week of loving care, proper diet and medical treatment, the patient recovered from her traumatic condition and was able to provide details of her family. Our staff then traced out the family and obtained an affidavit from them which authorized us to look after till the end and also perform the funeral rights in the event of her death. She spent about two months in our hospice where she was given quality end of life care and finally passed of peacefully, without pain, and most importantly in dignity. Her funeral rights were also performed by our hospice staff, again, with full respect and dignity to the departed soul. This story exemplifies the kind of service we are provide for the poor populace who cannot afford to get quality palliative and end of life care under the prevalent health care system.

Master V, a 4 year old sweet boy came with his mother to MNJIO & RCC in Feb 2019 and diagnosed with Neuroblastoma. He landed in ICU in the first few weeks of his admission with breathlessness. The PPC team was treating him for abdominal pain and knew their background. His mother is a graduate who settled into the role of a home maker taking care of her two children. The father died due to liver failure one year prior to the diagnosis and his family did not want to support them anymore. So the single mother with no work experience with the help of her brother was trying to handle the situation. The mother had many doubts and was struggling with loneliness and the team did their best to never miss following her up.

The child recovered from the ICU episode and went back to taking chemotherapy. But within few months it was evident he was far from getting cured. The reports suggested the same. This is when things got all the more tough for the mother. She has already been away from her 6 year old daughter whom she has sent to a hostel as she felt she needed to spend more energy and time with her son for him to get cured. He lost his vision at this point. To imagine a 4 year old losing his vision- I think they understand the world by looking at it and making connections. He would get startled at the smallest of touch or sound. The team had to work with mother and child to make him physically comfortable and emotionally secure.

Medical Oncology said nothing more to be done and handed him over to Palliative Care completely on 9 July 2019. The team made a plan with mother and the uncle to send the child home for as long as they are comfortable to take care of him in the village. Phone calls were done regularly as part of follow-up. However, as expected soon he worsened and mother was scared to take care of him any more at home. The opted to move the child to the Kukatpally hospice for end of life care on 22 July. The child when brought to hospice was in pain, confusion and still could not see. Medically, he was very challenging because his age and symptoms made assessment and optimization of drugs extremely difficult. Mother was suicidal and kept repeating that she has no reason to go on living if she loses her son.
The hospice team encouraged the mother to bring her daughter to the hospice who loved and missed her younger brother. He recognized his sister, but just kept on clinging to his mother. He passed away two days later pain free, in sleep Aug 7 2019.

In our bereavement follow up we found out mother was learning to be a tailor, currently busy with multiple family events. (Happy ones!) The sibling is crying that the hospice counsellor forgot her and asked her to speak to her.

We are sharing this to reiterate that PPC works not just with their patients but also the family members. Also, death does not just effect the one who is dying but those loved ones around them too.

Mrs. S was 50 years old. She was married at a very young age. She has one daughter. The day she was diagnosed with cancer, husband thought she was no more useful for his pleasure and left her and married another lady. S used to work in a hospital as Aaya and bought up her daughter. Her daughter got married. Unfortunately her daughter was attacked by seizures at the time of her delivery, both the baby and her daughter were no more to her and S has become all alone in her life. It took a couple of months for S to come out of these situations. As all this were not enough she was diagnosed with cancer cervix. She used to come to the hospital all alone for treatment. One or two times her sister accompanied her to the hospital and later she was abandoned. Doctors tried their best to cure her disease but due to her aggressive disease S’s general condition started deteriorating day by day and she was not fit to undergo further treatment. She was completely transferred to pain & palliative care for end of life care. The same day we treated for her pain and other symptoms and shifted her to the hospice. She was admitted and the staff in the hospice tried to provide the best palliative and supportive therapy. In the initial days she was moving around in the hospice and later she developed Lymphedema in both the lower limbs and has become for her to move or even get up from the bed and few days later she has become totally bed bound. When S was in the hospice her sister came to see her only once and didn’t even bother to take care of her. When her sister came and S was conscious we have taken consent from her and sister to cremate her and perform funeral rites. During her final days she used to request the staff for food items of her choice. Call it premonition- S requested to be taken to her former house to say good bye to her friends and neighbors. When she came back S had one thousand rupees with her. She donated the amount to our administrator. Finally S left this world and there was a sense of peace on her. Her body was cremated with proper care and dignity and the funeral rites were performed by our staff.

‘Baby P asked for a purple cycle. Is there any way we can get her one?’
This was the question on the minds of the doctor, nurse, and counselor of the children’s palliative care department at MNJ hospital in Hyderabad last month. P was a 12 year old child with leukemia on chemotherapy since a couple of months. We first met P during a play hour session for all the children in the cancer ward. She danced to a popular Telugu film song and she looked just like any other healthy child, only more brave and lively. She showed us the true measure of her bravery when she started losing her liveliness. A couple of weeks after that dance we got a referral from pediatric oncology to see P for generalized body pain. She was in severe pain, confined to her bed, and her face had swollen up so we barely recognized her. She talked in a soft voice, telling us about her plans to re-write the school exams she was missing. Her mother started crying because the oncologist had told her that P wasn’t doing well. Her blood cell counts were showing a downward trend. Over the next week P got worse. She was passing blood in her urine and vomiting several times a day. When we saw her one morning, she asked us for a purple cycle. ‘But, P , will you be able to ride a cycle now?’ ‘I will get better soon, and then I will ride the cycle.’ P’s cancer was diagnosed to be relapsed and beyond cure and we realized that her purple cycle was something like a last wish.

We approached the funds committee of the Pain Relief and Palliative Care Society with our proposal the same day. P was now bed bound and we knew she would most probably never be able to ride that cycle, but that didn’t stop any of us. By the next day we had found a second hand pink cycle online and purchased it. We brought the cycle to her bedside and she reached out with her hand and grabbed the handle.

One morning, P passed away two days later in her sleep with the cycle by her side

This is the story of Mr. DS . He suffered with advanced Cancer Glottis. He underwent surgery and was left with Tracheostomy. He was referred to palliative care for his pain and tracheostomy care. Wife is the care giver and he has 3 children( girls). They used to live in a small little room which is as small as our wash room. Wife is also a TB patient. He often used to complain of severe pain 10/10 round the neck and difficulty in swallowing and disturbed sleep due to pain and other psychological factors. He was registered for home care as he is the patient from Hyderabad. Home care team used to regularly follow up with the patient trying to address his physical and psychological pain. Divan Shah was a auto driver and he was unable to work to his disease condition. His wife used to go for tailoring work and earn some little money to run the family. Through our organization we used to support the family by providing the basic needs like Rice, Dal, Oil etc for their day to day living. We also admitted in hospice for a couple of days and he was happy when he was at home surrounded by his children. Where as he used to stay in hospice with his wife. The wife was well prepared and explained about his disease condition and his children were too young to understand about their father. One fine day Divan Shah is no more and passed away at home. We also put all his 3 children in a government school. We tried our best to make his end comfortable and peaceful. With the help of donors and well wishers we got his wife a sewing machine so that, she could take care of her children with her lively hood by tailoring by staying at home.