“We couldn’t afford treatment….. all we could do was play Carom with him…… and watch him die in pain”
Sheikh Mustafa
BARAMULLA: Mir Shahid holds back tears as he recounts the devastating impact on his family, while his father suffered from CA (Carcinoma) Lung cancer.
His father, a school teacher with humble means, succumbed to the disease last year after a valiant two-year battle. “We tried everything,” Shahid, 21, from Sheerwani Pora Boniyar, says, his voice choking occasionally, as he speaks. He goes on, “We borrowed from relatives, sold our land, even took out a bank loan, but it wasn’t enough.
“Unfortunately, the diagnosis came too late, at stage 3, leaving us unprepared and heartbroken,” Shahid, the eldest of six siblings, who now shoulders the immense burden of responsibility, says.
Shahid’s story is not unique.
Cancer cases in Kashmir, like elsewhere in the world, are increasing by 10-12% a year. In 2023, 1640 new patients were added.
But statistics alone cannot capture the human cost.
Countless families in Kashmir grapple with the devastating effects of cancer, their lives forever altered by loss, grief, and financial hardship.
Abdul, (name changed) a 16-year-old boy from Baramulla’s Uri, was diagnosed with Osteosarcoma (bone cancer) during his 8th standard.
“Treatment is expensive,” his friend Sheikh Tabarat says, and adds, “His family wants him to provide him the treatment, but the question is, for how long?”
Despite crushing poverty and his father’s struggle to provide for their family, Abdul yearns for a chance to live, and to live beyond just mere existence – to learn and to build a future. But cancer does not spare even the young. For him, it continues to be a battle of survival which becomes especially challenging as his family does not have enough money to support his treatment.
The reality for many patients is etched in hospital visits, agonising treatments, and financial struggles.
Financial Burden and Limited Support
Dr. Lone acknowledges the significant financial burden imposed by cancer treatment, particularly Chemotherapy which can cause substantial suffering for patients and be a drain on their pockets.
He says there are challenges faced by the poor and underprivileged individuals who may be forced to abandon treatment due to cost constraints, but emphasizes that there is some support offered by various societies and government. Cancer Society of Kashmir provides Rs. 32 lakh worth of drugs to poor and deserving patients. Besides this, there is also the Prime Minister’s fund, the Cancer Aid Fund, and the Ayushman Bharat scheme, which provides free treatment up to Rs 5 lakh.
However, he mentions there are limitations. For instance, for the Ayushman Bharat scheme to be claimed by the beneficiary, the patient must be admitted in the hospital. This excludes some cancer patients, who do not require hospitalization. He also mentions that while some expensive anti-cancer drugs are available free of charge at government hospitals, most of them are not and are exorbitantly priced.
“Much more needs to be done,” he emphasises.
They couldn’t afford treatment
Due to poverty, underprivileged individuals often struggle to afford treatment for the dreadful disease.
This is exemplified by Mubarak, (name changed) whose brother was one among the many who died because the family could not afford treatment. Mubarak from Sheerwani Pora, Boniyar is 18 and his father, the sole earning member of the family, is a labourer. A year ago, he lost his 20 years old to leukemia (blood cancer), he reveals.
Due to financial constraints, he could not get regular treatment.
“Some neighbours suggested we take him to a rehabilitation center but his condition was worsening fast and his mother couldn’t bear the thought of keeping him away from her,” says Mubarak.
“He was losing blood continuously, and we knew his time was limited, but we never gave up on him. Sadly, he left us last year after a year long of agony,” Mubarak added.
“All that we, siblings, could do for him was to spend that one year together and take care of him. My younger brother and a sister would sit with him and play Carom Board, a gift from a neighbour everyday till we could and then painfully watched him breathe his last,” he adds with a sigh.
The Survivors
But some are more fortunate to have battled successfully against cancer and survived.
Nur Bibi (name changed) an old woman from Sheerwani Pora was diagnosed with Uterine cancer (Carcinoma Endometrium) at 65. Her family, struggling to make ends meet, were devastated. Though the government schemes offered some relief, the financial burden was still immense, her son, who did not wish to be named said. They sold household items to meet the expenses.
“Selling our only cow was a heart-wrenching decision,” he said, his voice choking. After a pause, he adds, “We fought for our mother. Finally, the doctors removed the affected part, saving her life.”
Rich or poor, feeling of loss is the same
“Cancer doesn’t discriminate, says Nisar Ahmad Mir, a General Medical Nursing Student, from Iqra Institute of Para Medical Sciences Baramulla. “It can hit anyone, regardless of wealth, status, gender or age.
“I’ve seen it first hand during my studies, witnessing the unique challenges faced by both rich and poor families. The fear of losing loved ones, the financial strain, the constant battle for hope it’s a universal struggle,” he says. The battle against cancer is not just about the money. “What if the treatment doesn’t work?
Even the wealthy face the same gut-wrenching fear of the potential loss of their loved ones.
“We had the best of doctors and treatments at our disposal,” says Sheikh Shafi ul Islam, a businessman, and adds, “but, I will live the lament of not being able to save my brother. At a very young age, he died leaving behind five children.”
Islam is now left with the regret and the nostalgia. “He was full of life,” Islam says about his brother. “We worked together in our walnut and wholesale business. We were always together. Life was beautiful. But God’s plans are beyond our understanding. He was diagnosed with lung cancer. He was already suffering from issues like high blood pressure and diabetes. Cancer struck a death knell,” he says.
“We gave him everything, explored every option, but this dreadful disease took him from us,” he says, driven to tears. Islam’s brother died more than a year ago but the pain lingers for him and rest of the family.
The Emotional Toll
Cancer’s impact goes beyond the physical. The fear, anxiety, and depression it triggers often go unaddressed.
“The disease doesn’t only impact the Patients mental health but also the families’ mental health rather even the whole dynasty. Dr Lone a leading oncologist. “Patients need not just medical care, but also emotional strength to cope.”
According to a 2023 study, 42.6% of cancer patients have depression and 40.9% have anxiety. The study also found that patients who begin chemotherapy are more likely to be depressed than those who also receive counseling.
Dr. Lone paints a much more stark picture of the emotional toll cancer takes. He describes how loved ones become caregivers, sacrificing their own lives to navigate the turbulent waters of diagnosis, treatment, and beyond. This burden of worry, fear, and grief can be immense, impacting mental and emotional well-being, and its ripple effect stretches outwards, affecting relationships, work, and the very fabric of the community.
Added to this, Dr Lone highlights the prevalence of sadness and depression among cancer patients, stemming from the sense of loss of health and the life they once knew, emotions that can linger even after patients are done with treatment.
As Shahid says, “Both the emotional and financial strain is immense,” he confesses, admitting to relying on antidepressants to cope. “My father is gone, but the weight remains heavy, crushing at times.”
Even for Nur Bibi, a cancer survivor, and her family the emotional toll continues to linger. Fear was her constant companion while she was battling cancer. “It continues to be even after she has overcome the disease. Worries of cancer revival also bog her down.”
Inescapable and Endless Trauma for Some
26-year-old Mubashir’s life that has been caught in the grip of the vicious cycle of cancer, loss, survival and back to loss again is heart breaking.
Six years ago, when Mubashir’s mother was diagnosed with gallbladder cancer, the family grappled with not just the daunting reality of her disease but also a traumatic past. He was two years old when he lost his father to the dreadful disease.
For someone, who had experienced loss due to the killer disease, the word ‘cancer’ did not just invoke dread. It invited terror. It revisited the family disrupting their lives. “My mother had been the pillar of our support after my father died. She was the home-maker and the breadwinner. She continued to exude strength and optimism even as she battled the agonizing disease,” he says.
“I initially felt lost but she kept her spirits high and encouraged me to continue my studies,” he recalls, while talking about his mother’s will-power.
“Luckily, a combination of surgery and chemotherapy worked and the doctors were able to get rid of the cancer,” he reveals and adds, after a pause, “But this victory over the disease was short-lived.”
Three years later, Mubashir’s world was shaken again when his mother was detected with dual diagnosis of stomach and advanced stage of lung cancer.
As the family’s sole bread earner and amidst his crucial studies, Mubashir felt the weight of the world on his shoulders. With the help of close relatives, they tirelessly pursued treatment options, but their efforts were ultimately unsuccessful. She fought valiantly for a year before succumbing to the illness in 2023.
“I held her hand as she breathed her last,” Mubashir says, his voice shaking. “It was difficult to let her go. She was my strength and it took me time to muster my own.”
“Amidst financial burdens and shattered dreams, I found my courage and strength in the memory of my mother whose profound love, willpower and optimism became my guide,” he says.
“Whenever I feel dismayed, I think of her. She is still in my heart…… she is the light of my eyes, the beat of my heart, and the smile on my face,” says, but adds, “the void never fills.
“Now I pray that she at least come in my dreams,” he says, his eyes moist.
Coping Up
With poor and limited psychological avenues available in the Valley for cancer patients and their families, many of them find their own ways to emotionally cope up.
As Nur Bibi’s son says, “We cook her favorite dish every week and try to joke and make her laugh. Laughter is the best medicine. It takes us to different worlds, away from this one for a while.”
“Even amidst the chaos, we tried to find moments of joy,” says Shahid, recalling the years that his father was suffering from cancer. “We would gather for family dinners, share stories, and laugh together. My father, despite his weakness, would still give online classes to students to pass his time,” he says and talks about his will-power and courage.
Shahid adds, “He was the one who would lift up our spirits with a joke, reading us from a book or offering Salah.” “These small moments of normalcy were what kept us going,” he recalls.
Tabarat recalls that sometimes when he visited his friend Abdul, he would find him in a fit of anxiety – unwilling to come out of his room or talk. “In such moments, I and some other friends would try cheer him up. We watched a movie every Saturday. On days that he felt physically better, we went out. We even had a beautiful picnic in Uri’s last village.
“It wasn’t much, but it reminded us of the simple things in life that still matter,” said Tabarat, sharing the memory of his 16-year-old friend who oscillated between anxiety and hope – a young boy caught between the weight of circumstances and the unyielding spirit that was yearning to break free.
(This is Part-II of report on ‘Rise in Cancer cases in Kashmir’. The second and final part on the financial and emotional impact of the disease to follow. Part-I can be read here)
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