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Dr Sameer Kaul, MD

It was a standard curse showered against each other during the legendary fights between boatwomen. But now this curse has come true in Valley

Taking a trip down memory lane leads me to three decades ago, when I was one of a motley group of medical rookies gathered around a hapless patient’s bed in one corner of Ward 16 at Srinagar’s Sri Maharaja Hari Singh Hospital, popularly called ‘Hedwoon’.

 A teaching clinic was in progress. All of us, including our instructor, wore a resigned, sympathetic attitude towards the physically-drained patient, who was suffering from disseminated large gut cancer. Once in a while, we did listen to and watch our adventurous and brave senior faculty operating stomach and colon cancers. But those occasions were few and far between. Most of the old men and women we felt sorry for, ended up going home to die anonymous deaths, quite often without a diagnosis. Those days, there was meager knowledge of early clinical features, diagnostic modalities, treatment options. In the medical and public domain, cancer was an unimportant disease. In our neighborhoods and communities, no one talked about it. The media never wrote about this ‘insignificant malady’ either. Back then, the Government Medical College and associated hospitals were, nevertheless, acknowledged to be at par in academic and clinical standards with the best institutions in the country. While the private medical sector was represented by but a few clinics, it was almost entirely the government infrastructure that delivered healthcare, albeit with a socialistic top-note. Even amidst the educated and higher echelons of society, awareness of healthcare was almost non-existent. Naivety ruled the roost.

In the latter part of the nineties and against everyone’s advice, I began to obsessively reconnect with my roots. By then, the Valley had plunged neck- deep into turmoil, public life was in disarray, skilled manpower – precious to the state – had crumbled and along with it, infrastructure. All institutions were in the throes of developmental arrest.

As my monthly weekend clinics were conducted quite often on a houseboat on the Dal, I gradually woke to the sad reality that cancer had, during my years of absence from the Valley, emerged as the leading killer of my people. It was almost as though the disease was vying with bombs and bullets for that dreadful position.

The Sher-e-Kashmir Institute of Medical Sciences (SKIMS) now had departments for Medical and Radiation Oncology. Doctors there worked tirelessly to cater to the thousands of cancer patients who had begun flocking to their OPDs. Stomach, food-pipe, large intestine, lung, breast and ovarian cancers seemed to have mushroomed over the many years I was away. Children who should have been frolicking with their friends in courtyards and alleys were wasting away from blood cancer. It was heart-wrenching. “Hattay Goye Kansar” (May cancer afflict you), was now a standard curse showered against each other during the legendary fights between boatwomen.

Decidedly, oncology had now emerged as a specialty domain. The sheer onslaught of patients deserved a response from the public and private sector. That response, as you shall conclude, was too unsubstantial and – left too late. 

SMHS hospital, private diagnostic collection centers and laboratories, a couple of small nursing homes/hospitals and – in the interim – the Jawaharlal Nehru Hospital have joined the fight against this deluge. Newly- trained professionals have stepped into haphazardly-run services.

But l hope to God that their enthusiasm to fight cancer does not run out, before we are able to empower them with clear strategies for early diagnosis, the application of technologically-superior Linear Accelerator machines for precision Radiotherapy and PET scans for immaculate staging and quick immuno-histo-chemical and molecular analysis. And last but not least, to make the latest, targeted bio-tech chemotherapy procedures affordable to every last patient.

Consider this. The vital dye 18 FDG Glucose, which is required for PET scans, is produced by a 30-crore rupee mini-nuclear reactor called Cyclotron. But its effectiveness lasts merely 2 hours after production. I fear that the use of this crucial dye will remain a dream, unless and like anywhere else in the country, the Government of J&K invests in Cyclotron to save on those crucial 2 hours of the dye’s efficacy.

Governments always get away with their incompetence, at least in this part of the world. So also in Kashmir. They have failed us in our state. There are no cancer control or screening programs, no genuine records to analyse and formulate strategy, no enhanced access to optimum care. If the government were to really decide to help, its role would lie in enhancing access, monitoring and regulating cancer care. And yet, a specialized cancer hospital continues to be a mirage, while our policy-makers seem far from interested in scrupulously insuring at least Below Poverty Line (BPL) patients. When will we understand that quality cancer care cannot be achieved by cutting corners? Accept that diagnosis and treatment of the killer disease is bound to remain expensive for a long time to come. So, for Allah’s sake, why can’t we insist that it is covered by medical insurance? 

As for now, impoverished cancer patients can at best philosophize that there are no free lunches, and that this is, indeed, the way of the world. But it is up to us, our society, to acknowledge the crucial responsibility we, ourselves bear. There must be more bodies like the Help Poor Voluntary Trust, Cancer Society of Kashmir, and others to help distressed families. There must be ‘end-of-life care’, a concept that remains yet unknown in our country.

Running down slack politicians alone is a national past-time. We seem to forget that we chose them. How long can we, as citizens and the foundation of society, escape blame for our own ineptness? We frantically approach hospitals only after our bodies have begun to show serious signs of malfunction. Unlike in the West where even ambulances are serviced routinely, preventive check-ups still remain an elite phenomenon in our country. We prefer to remain preoccupied with other, more ‘important’ things: like a daughter’s marriage, the construction of a house, a marathon, mutton-eating spree. And when that diagnosis hits us, we expostulate in disbelief and horror. Medical prescriptions and previous treatment records are hastily stuffed into plastic bags and presented at OPD, making it a trying experience for the doctor to construct an accurate history of the disease in the patient. But is it the patients’ fault? No. Because nobody has taken the time to teach them meticulousness in assembling their medical history.

Where’s the media in all this? Why are Engineer Rashid’s antics more newsworthy than stories of hope and desperation of Kashmir’s cancer patients? Do you not think that you are leaving a subject of burning urgency unaddressed? Have you bothered to drill home the message about the devastating effect that our food and lifestyle may be having upon our health, so that readers may correct course before it is too late? Have you repeatedly warned them that cancer kills? That it takes only a few more lives than road accidents but a far greater number than even militancy in the Valley?

“Hum Dekhenge, hum dekhenge, Lazim haiki hum bhidekhenge. Woh din ke jis ka waada tha…” As a cancer specialist myself, I sincerely wanted to help and so joined politics. But the human failures of our leaders can often play spoilt-sport. I quit. But I do believe that my tryst with public life was a means towards all that I desire for my beloved people. And come what may, I shall continue to put in my best efforts to combat and remove death’s shadow from our beloved land so that the sun shines through the bleak windows of the poorest of the poor. 

Courtesy: Kashmir Ink

Nazir Ganaie

Awareness and early detection is the key to fight this dreaded disease

The dawn of October 8, 2014 continues to haunt my family, for it took the colours out of our lives. I lost my father on this day. The invincible Abdul Karim Ganaie lost his two year battle to cancer. My mother lost her support, her companion, and I lost my best friend.

We all lost that day – to Cancer. It’s a catastrophe that engulfs the whole household, not only affecting the patient but also draining the families off mental and physical strength. And it puts to test the resilience of best of social ties and ruins family finances.

The last day with my dad is forever etched in my memory. I asked him how he was feeling. He said he was ‘alright’. In the last hours, though we didn’t know they were his last, there were no complaints about any pain or complication. He just wanted to talk, to reminisce, and share things. But God had something else in store for us. There was a sudden onslaught of breathlessness and we rushed him to the hospital. It is the God’s call, he said, and his last words were, “take care of your mother and prove to her that you are the most amazing son.”

Life hasn’t been the same without him. He left a great void in our lives. It wasn’t just the death that hit us but it was seeing a loved one slip a day at a time to succumb to the disease. It came as a surprise, though it shouldn’t have, for I had seen the same exact story enfold before my very eyes, as a reporter in the middle of writing a series of reports on Cancer.

Long before my father got sick, I had been a regular at the Regional Cancer Centre (RCC), SKIMS, profiling cancer patients, their histories, plight and fight with the dreaded disease. At RCC, SKIMS, I would spend my days talking to doctors and patients about the disease. I knew who the registered patients were; I knew who were undergoing chemotherapy at the Centre. From top 10 cancers to profiling the cancer hit families, I wrote about it all.

It hadn’t been easy though, for it was difficult to go there every day and see those people suffering. I tried to empathise with them and in my naiveté, I thought I did, but time told me how insufficient and useless my empathy was to them. I had the statistics, the numbers and even the verbatim on the healthcare, but I only understood the horrors when I found myself at the same institute, barely three months later, in the same queues, with my father. My Dad had started coughing blood and on testing was diagnosed with the small cell carcinoma in left lung.

When the doctors gave me the diagnosis, I was stupefied for a minute – How does one tell a man he’s dying, how does one tell his father who looks as fit as a horse on the outside, that he is on the last leg of his life. I was staring at the end, but that was just the beginning.

What ensued after my father’s biopsy test results came back positive, was a series of illness, like dominoes falling. It started with me having severe panic attacks followed by my mother and my sister. Being the lone son, the mantle of responsibility had passed on to me, and I wasn’t even equipped to console myself.

Every evening, a battle would ensue in my mind with fright trying to take over the logic, the rationale. Each night, I relived every terrifying moment of that day, every minute at the treatment centre, every word spoken by the doctor, every expression in my Dad’s eyes.

As a reporter, when you enquire someone about their issues or disease, you may get the statistics, numbers or the current figures but what one lacks is how these patients are feeling, their struggle and the quantum of trauma each one of them goes through.

The spell of struggle and suffering was far from ending. My dad had a difficult time coming to terms with the reality and would often ask me “Why are we coming to SKIMS? Why are we coming to the cancer centre?” I had the hardest time answering his questions.

Slowly and gradually, my father started accepting that it was a little more than just chest pain. Soon after he was put on chemotherapy, the transformation that followed was sudden, and shocking. His hair started falling, his face started getting deformed and this, I realised, was the most difficult phase in any cancer patient’s life. The medicines that are supposed to cure them make them hate themselves, their bodies.

In Kashmir, where good Medicare is scarce, and central healthcare system is in shambles, for cancer patients, the diagnosis is nothing short of a death sentence. While there is a lack of proper medical infrastructure, there are also no provisions to cater to mental health of the patient. There are no counselling centres or sessions in the healthcare institutions, especially in the tertiary healthcare institute SKIMS. For patients diagnosed with any type of Cancer, it is as if they are left to be living corpses, for even before their bodies fail them, it is their spirit and their will to live that dies.

After witnessing first-hand the lack of guidance and support available to patients, I along with my other journalist and doctor friends started an initiative called the ‘Cancer Free Kashmir’. We took on the task to provide counselling sessions to those in need – the cancer patients and their families.

The year 2015 is marked forever in the memory of 50-year-old Raja Abdullah of Central Kashmir’s Budgam district. Her elder daughter, Yasmeena Akhter was diagnosed with lymphoma at a time when she had just a few months left in her life. She lost her battle to cancer at SKIMS. Today, Raja Abdullah lives with her two little granddaughters and is struggling to survive. She recalls that her daughter, a teacher by profession, would often complain of weakness and had even fallen unconscious on a few occasions in her classroom. “We took her to the doctor and she was immediately referred to SKIMS, where she was diagnosed with cancer,” a teary eyed, grieving mother told me. “We sold everything valuable to try to get her the best treatment. But what we got back from the hospital was her dead body.” Abdullah is filled with fear and trauma. “Whenever I hear anybody getting cancer in my vicinity, the level of trauma and distress doubles,” she says.

Shabir Ahmad Thoker, a laborer, had his world come to a standstill when on a deceptively normal day, he found his 8-year-old boy, Uzair Ahmad, severally pale. He was diagnosed with brain tumor. It was traumatizing for Thoker and his family as they found their little boy was dying. Thoker, who struggled to make his ends meet, resorted to begging to save his son’s life. Uzair passed away within 14 months of undergoing chemotherapy sessions at SKIMS. “The death of my son has shocked me and my wife,” he says. “I blame myself for I was not able to give my son the best treatment here. I sold all my land and took him to Delhi where he underwent surgery.” He goes on, “My boy was fine, he was getting better, and then my Uzair was suddenly diagnosed with bone-marrow cancer and within a few months he died in severe pain,” says Thoker, wailing.

Rich or poor, the story of cancer patients has the same share of suffering and pain. Almost a year has passed after Sumegha Gulati, a friend, a great human being, a brilliant reporter, a fighter, a motivator and a wonderful counsellor, lost her battle to cancer. She passed away at the young age of 26 after a four year long battle with Hodgkin’s Lymphoma in Mumbai.

For Sumegha, Kashmir was her first love. She would always talk about its picturesque meadows and volatile streets and its hospitable people.  Besides a fellow journalist, Sumegha came as a God sent help to me. For years she had been a good friend and then, Sumegha, the brave heart, turned into the source of my biggest relief. She became my dad’s first counsellor in his time of need. The day when dad’s biopsy test came back positive, Sumegha rang me up and asked me to get ready for the worst days to come. “You have a cancer patient in your family now and it is going to challenge all of you mentally, physically, emotionally and most importantly economically,” she advised. She was like a brave sister who would ring my dad every evening despite her busy schedule in the office and her own fight with the disease. She counselled me and my family, knowing how difficult it is to have someone with cancer in the family. She used to advise us to stay strong and garner all the strength for the days ahead. While she was undergoing cycles of chemotherapies in Tata Hospital in Mumbai, she would always wish to spend the rest of the time in Kashmir to undo that pain. “I see many Kashmiri families coming to Bombay or Delhi with the hope that they get the cure for the disease. However most of these families are almost under the state of depression without any support from government, social and other organizations,” Gulati would tell me. The melancholic spell for Gulati ended with her death.

In other states, there are a lot of NGOs that help support people suffering from such diseases both physically and financially, while in Kashmir, the trend is quite reverse. “You have a drug mafia further ailing the system,” says noted radiologist, Dr Maqbool A Lone.

Gulati did not stop working, and produced several pieces of journalism during her illness. In her last three months of life, she worked on a story of cancer treatment in India, based on her own time as a patient. She could not finish the project, but managed to record a part of her experience.

A friend’s death is always a shock and she has left so many memories behind. Now Sumegha is free from pain and suffering. Such was her strength and courage that she used to regularly visit my dad at AIIMS and engage with him in laughter therapies. Dad would always tell her that the disease was so tiring, so depressing and so painful but it also bestowed him with a sweet daughter in her.

With cancer being a major health threat to the people across the globe, Kashmir has also witnessed a surge in the number of cases in the past few years with lung cancer topping the list. The lone Regional Cancer Centre, SKIMS, witnesses a heavy rush with nearly 40,000 cases in files, that doctors call follow-ups, visiting it for various kinds of therapies.  The rise in the number of cancer cases could be attributed to larger number of ageing population, unhealthy lifestyles, and use of various forms of tobacco and related products; unhealthy diet and, in most cases, the non-availability of better diagnostic facilities for early detection. According to experts, the top 10 cancers afflicting the Valley are Lung cancer, Esophagus (cancer of food pipe), Stomach, Colon (large intestine cancers), Breast, Brain, Non-Hodgkin’s Lymphoma, Gastro Esophageal, Junction cancer (cancer between the stomach and food pipe), Ovary and Skin cancers.

Leading oncologist and Director, Regional Cancer Centre, SKIMS, Dr Muhammad Maqbool Lone says that the situation in Kashmir is becoming alarming every day, with the highest number of lung cancers cases in the country being found in the people of Kashmir. “The demographics of this disease have changed significantly in the valley. The disease is alarmingly on surge. There are patients hailing from every part of Kashmir including the far flung areas which are diagnosed with this terminal disease,” says Dr Lone. He said that the lung cancer, the cases for which were few and far between till just a few years, has today surpassed every other cancer to become the most common form of cancers across Kashmir valley.

According to researchers, cancer is a generic term for a large group of diseases that can affect any part of the body. Other terms used are malignant tumours and neoplasm. One defining feature of cancer is the rapid creation of abnormal cells that grow beyond their usual boundaries, invade adjoining parts of the body and spread to other organs. This process is referred to as metastasis, a major cause of cancer death.

Screening and cancer detection camps are seldom organized in far off areas. Research work is adversely affected with doctors being overworked managing the heavy load of patients, which affects the quality patient-care. What is worse is the absolute disregard of the authorities regarding the need and importance of research in combating this illness. Directorate of Health Services should also play its role in creating awareness about cancer among the people, or provide for some preliminary diagnostic facilities at various healthcare institutions.

Cancer is not a death sentence; it’s curable with awareness and early detection being the key elements in fighting this malady. What is needed is social mobilization at grassroots level to create awareness and roping in non-profit organisations to organise screenings across the valley. When the public institutions are insufficient, mass mobilization is the answer to safeguard the communities and the people from this dreaded disease.

Courtesy: Kashmir Ink (A Greater Kashmir Publication)