When his paralysis during the last stage of cancer made him bed-ridden, Khurshid Ahmad Khan requested his family to move him closer to a window so he could look at the open sky and flying birds.
Struggling with backache in 2014, Khan underwent a series of tests to detect the root: he was diagnosed with Stage IV prostate cancer. This compelled Khan’s then 24-year-old daughter, Umama Khan, to leave her undergraduate in a dental course in Uttar Pradesh midway and return to her father in Srinagar.
A couple of more tests later, the doctors at Sher-i-Kashmir Institute of Medical Sciences (SKIMS) assured the family that orchiectomy — surgical removal of testicles — would stop cancer from spreading further in the body. But it was too late as cancer had “already started spreading,” said Umama.
After the surgery, however, his Prostate-Specific Antigen (PSA) level was reduced to 100 nanograms of PSA per milliliter (ng/mL) — only to shoot back to 384 ng/mL while the normal level of PSA in the body of males is 4 ng/mL. After that the lower portion of his body got paralysed, said Umama.
It was immediately followed by chemotherapies. And soon after, Khan’s lost appetite, weight, hair and would sweat excessively. “It was the toughest year of our lives,” Umama recalled. It was just the beginning though.
Every year, Jammu and Kashmir record 6,000 cases of cancer, said Nazir Ahmad Khan, Professor of Radiation Oncology at Sher-e-Kashmir Institute of Medical Sciences (SKIMS). “Around twenty cases are recorded every day,” Khan added.
Lung, esophagus, and stomach cancer are most common among males in Kashmir while breast cancer is common among women, Khan said. He added: “In breast cancer the chances of survival are high. But in the esophagus and stomach cancers, the chances of survival are less.”
As the cancer patients continue fighting for survival, their deteriorating health conditions and the financial burden of the expensive treatment often leads to psychological issues among the families and the patient’s caretakers.
Affecting the psychological state
Following the initial examination, the family was told that Khan would not live more than three months.
He survived another year as each day became a new struggle for him. Umama remembers keeping a towel over Khan’s pillow in the morning and collecting the fallen hair by evening — his bedding and clothes soaked in sweat. During his final days, he bled instead of urinating as he suffered from pleural effusion — the accumulation of fluids around the lungs.
For Umama, things changed at a quick pace. Amid her father’s ailing illness, and the only brother who settled in Malaysia, she took the responsibility of looking after him.
After the paralysis disabled Khan to even move his head and “my mother and uncle would help me to change his clothes and bedding at least thrice a day.” “He had stopped eating completely,” Umama said. “I tried to make him eat all kinds of things just so he would end up eating at least something.”
Each night Umama would hear her father moaning in pain, leading to panic and frustration within her due to her inability to help her father. “He couldn’t change his position. So I would shift him from side to side throughout the night,” she said. “He would try to hide his pain.”
With time, it got difficult for the family to stay patient in front of him. As Umama’s mother had extreme mood swings and bouts of anxiety, that year was full of panic attacks for her.
On 18 January 2016, Khan had his last breath. “He died with his head on my lap,” recalled Umama. “I couldn’t get that scene out of my head for months after his death.”
This year-long episode pushed Dilshad Ara, Khan’s wife, into depression. “Initially she would cry all the time, then she became completely silent and finally she started having extreme mood swings,” said Umama of her mother, “she was disappointed with life.”
The family took a lot of time to believe that Khan had died. “For a very long time after his death, I would suddenly think that I have to give him certain medicine or do something for him,” said Umama. “A loss after all is a loss.”
Financial distress
Nearly fifty-eight kilometers away from Srinagar, the Khanday family in Larkipora village of Anantnag in south Kashmir has embarked on a similar journey.
For months, 20-year-old Adfar Khanday was in pain as her abdomen ached. She too underwent a series of tests before her colon cancer was detected.
Three months ago, she was rushed to SKIMS for surgery. The chemo followed.
However, Adfar’s father, the only earning member of the family of four, has been unable to bear the expenditure of her therapies. So her younger brother, Liyaqat Ahmad Khanday, had to drop out of college to focus at home.
While the family somehow managed to pay for Adfar’s surgery, they have been completely dependent on the Cancer Society of Kashmir, a non-governmental organisation, for her therapies.
“It is difficult for us to even pay for her medicines,” said Liyaqat. “The treatment is very expensive.”
Showkat Ali Zargar, Chairman of Cancer Society of Kashmir, told The Kashmir Walla that this disease is a nightmare for the families of patients.
“It immediately causes fear and a sense of hopelessness among people. People feel that life is out of their control and they cannot do anything about it,” he said. “[But] in such cases, family members can be the biggest source of strength for patients.”
Since the treatment’s expensive nature, Zargar said that the Society was created for the same purpose. “We give free chemotherapies to patients,” he said. “Till now we have given free chemotherapies and medicines to around 5,300 patients.”
Mudassir Hassan Pandith, an Assistant Professor at Government Medical College Baramulla, said that after the diagnosis the families can have “negative thoughts”. He believes that every hospital or cancer society “should have properly trained clinical psychologists who can counsel the patients and such difficult times”.
