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I Lost My Father To Cancer Because Doctors Weren’t Equipped To Diagnose Him Early Enough

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It’s been exactly two months since I lost my father, shockingly, to cancer. It was shocking because he was only 47, and a teetotaler with a healthy lifestyle. He had never smoked, chewed pan masala or even touched liquor in his lifetime. I am yet to understand the reasons he got cancer; probably I would never be able to know, given the nature of the disease itself, as it happens due to a mutation in the human gene, which in turn could be triggered by a host of things present around us. So, as much as, smoking and drinking can cause it, harmful environment, inhaling poor quality air, consuming adulterated food, toxic vegetables or fruits and contaminated water, can  very much lead to the changes in the genes; which then allows the cancer cells to grow in a manner that it becomes impossible to keep a check.

Siddharth Mukherjee in his excellent book “The Emperor of all Maladies“, has discussed the history, origins and the contemporary state of this disease that has taken almost 20 million people in its hold in the US alone. Mukherjee also explains the nature of the disease and how it tends to shock people with its fatal blow striking suddenly. I wish I had read this book earlier, that way I could have taken my father’s pain (which he, on doctors and physiotherapists advise, brushed as Cervical Spondylitis) more seriously. If I could understand the severity of his symptoms, we would have been able to get an earlier diagnosis of this disease.

Who Shall I Blame Then?

Is it my fault? I have often asked myself. But the moment I begin to look for answers, another question pops up in my mind. Was it possible for me to know? My father who regularly had bouts of pain and sleepless nights had gone to physicians, orthopaedics, neurologists and physiotherapists seeking relief from the pain radiating in his shoulders. But the doctors remained ignorant about his condition and had no other explanation to offer, except calling it a lifestyle problem. Then, how can we – the non-professionals, doubt a doctor’s observations? We have no choice but to believe them.

The doctors advised painkillers and calcium and vitamin supplements, to boost his immune system and give him relief from the pain. When I think about it now, I realise how poorly read doctors we had encountered, not even a single person indicated that my father might have cancer, and we should take his health seriously. It was only in the last month when the MRI scan was performed that the radiologist offered me an ‘explanation’ for the pain, which incidentally, my brother also discovered just two days before his MRI exam. So, we got to know that it was a rare type of lung cancer, known as Pancoast Tumor. However, the cause remains unknown since it is more prevalent in smokers.

Network Of Labs, Mediclaims and Pharmaceuticals

Today, a network of health-diagnosis labs has spread exponentially in India. Anytime you visit a doctor with a problem, the first thing that he suggests is a medical examination, most likely from his known labs before even taking a guess about the disease. While a scientific examination is necessary, dependence on it creates hopelessness in the patients and their family. And if you want to get yourself examined in a government hospital, you must be ready to wait endlessly.

On the other hand, the veracity of private lab test results is itself in question. My father’s blood sugar was tested twice within a month. Both the reports had different results; the first made my father a patient of diabetes keeping him away from the consumption of sweets which he really loved and the other which took a random sample of his blood glucose and declared him fit and non-diabetic. Thus, for the first time, it raised suspicion in my mind about the accuracy and usefulness of these tests. Even if one was to believe the reports, the doctors also seem to suggest patients have unnecessary tests, knowing very well that it may not be of any use. Thus, innumerable tests waste patients’ precious time and money.

The next in line is the issue of people having an insurance/health cover which seems to vanish as soon as one falls ill and begins treatment. Doctors, hospitals inflate the cost of treatment for people having medical insurance. Thus, making the patient look poor, even when they have insurance coverage. The role that the pharmaceutical companies can play in the effective control of diseases is transformative, but alas, the purpose is curbed by the competitive market professionals, who openly offer discounts, gifts and offer free samples of drugs to the doctors for promotion. The strategy may well increase the profits of these companies, but it hardly benefits the patients who might have to take an extra tablet just because the pharma companies and doctors have decided to experiment with a new drug.

So What Needs To Be Done?

Given the appalling situation of poorly qualified doctors, little research on a disease, insatiable selfish and greedy lab owners, and hospitals with every day increasing cases of cancer; I urge that the government make a national policy for the treatment of cancer. The disease must be taken seriously so that people don’t lose their lives in our country fighting this deadly but treatable disease. The concern for the untimely death of ordinary people of this country must be a cause for action. Every person deserves to live their life to its full extent. Every day a lot of people succumb to cancer due to late diagnosis, ignorance and inadequate health care system. Given the alarming rate of the spread of the disease, the government should prepare a healthcare system to take this challenge head-on.

  • We need better-skilled doctors and healthcare professionals. This is a must.
  • We need better regulation of the labs for ensuring a more accurate diagnosis.
  • We need much more awareness about the disease at every level, from households to institutions.
  • We need much more funds for boosting research specifically on cancer and its causes.
  • Strict regulation of the insurance coverage, to ensure it’s actually useful for saving lives.
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An ambassador and trained facilitator under Eco Femme (a social enterprise working towards menstrual health in south India), Sanjina is also an active member of the MHM Collective- India and Menstrual Health Alliance- India. She has conducted Menstrual Health sessions in multiple government schools adopted by Rotary District 3240 as part of their WinS project in rural Bengal. She has also delivered training of trainers on SRHR, gender, sexuality and Menstruation for Tomorrow’s Foundation, Vikramshila Education Resource Society, Nirdhan trust and Micro Finance, Tollygunj Women In Need, Paint It Red in Kolkata.

Now as an MH Fellow with YKA, she’s expanding her impressive scope of work further by launching a campaign to facilitate the process of ensuring better menstrual health and SRH services for women residing in correctional homes in West Bengal. The campaign will entail an independent study to take stalk of the present conditions of MHM in correctional homes across the state and use its findings to build public support and political will to take the necessary action.

Saurabh has been associated with YKA as a user and has consistently been writing on the issue MHM and its intersectionality with other issues in the society. Now as an MHM Fellow with YKA, he’s launched the Right to Period campaign, which aims to ensure proper execution of MHM guidelines in Delhi’s schools.

The long-term aim of the campaign is to develop an open culture where menstruation is not treated as a taboo. The campaign also seeks to hold the schools accountable for their responsibilities as an important component in the implementation of MHM policies by making adequate sanitation infrastructure and knowledge of MHM available in school premises.

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Harshita is a psychologist and works to support people with mental health issues, particularly adolescents who are survivors of violence. Associated with the Azadi Foundation in UP, Harshita became an MHM Fellow with YKA, with the aim of promoting better menstrual health.

Her campaign #MeriMarzi aims to promote menstrual health and wellness, hygiene and facilities for female sex workers in UP. She says, “Knowledge about natural body processes is a very basic human right. And for individuals whose occupation is providing sexual services, it becomes even more important.”

Meri Marzi aims to ensure sensitised, non-discriminatory health workers for the needs of female sex workers in the Suraksha Clinics under the UPSACS (Uttar Pradesh State AIDS Control Society) program by creating more dialogues and garnering public support for the cause of sex workers’ menstrual rights. The campaign will also ensure interventions with sex workers to clear misconceptions around overall hygiene management to ensure that results flow both ways.

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With YKA MHM Fellow Vineet, Sabna launched Menstratalk, a campaign that aims to put an end to period poverty and smash menstrual taboos in society. As a start, the campaign aims to begin conversations on menstrual health with five hundred adolescents and youth in Delhi through offline platforms, and through this community mobilise support to create Period Friendly Institutions out of educational institutes in the city.

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A student from Delhi School of Social work, Vineet is a part of Project Sakhi Saheli, an initiative by the students of Delhi school of Social Work to create awareness on Menstrual Health and combat Period Poverty. Along with MHM Action Fellow Sabna, Vineet launched Menstratalk, a campaign that aims to put an end to period poverty and smash menstrual taboos in society.

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Find out more about the campaign here.

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A psychologist and co-founder of a mental health NGO called Customize Cognition, Ritika forayed into the space of menstrual health and hygiene, sexual and reproductive healthcare and rights and gender equality as an MHM Fellow with YKA. She says, “The experience of working on MHM/SRHR and gender equality has been an enriching and eye-opening experience. I have learned what’s beneath the surface of the issue, be it awareness, lack of resources or disregard for trans men, who also menstruate.”

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As a Youth Ki Awaaz Menstrual Health Fellow, Nitisha has started Let’s Talk Period, a campaign to mobilise young people to switch to sustainable period products. She says, “80 lakh women in Delhi use non-biodegradable sanitary products, generate 3000 tonnes of menstrual waste, that takes 500-800 years to decompose; which in turn contributes to the health issues of all menstruators, increased burden of waste management on the city and harmful living environment for all citizens.

Let’s Talk Period aims to change this by

Find out more about her campaign here.

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A former Assistant Secretary with the Ministry of Women and Child Development in West Bengal for three months, Lakshmi Bhavya has been championing the cause of menstrual hygiene in her district. By associating herself with the Lalana Campaign, a holistic menstrual hygiene awareness campaign which is conducted by the Anahat NGO, Lakshmi has been slowly breaking taboos when it comes to periods and menstrual hygiene.

A Gender Rights Activist working with the tribal and marginalized communities in india, Srilekha is a PhD scholar working on understanding body and sexuality among tribal girls, to fill the gaps in research around indigenous women and their stories. Srilekha has worked extensively at the grassroots level with community based organisations, through several advocacy initiatives around Gender, Mental Health, Menstrual Hygiene and Sexual and Reproductive Health Rights (SRHR) for the indigenous in Jharkhand, over the last 6 years.

Srilekha has also contributed to sustainable livelihood projects and legal aid programs for survivors of sex trafficking. She has been conducting research based programs on maternal health, mental health, gender based violence, sex and sexuality. Her interest lies in conducting workshops for young people on life skills, feminism, gender and sexuality, trauma, resilience and interpersonal relationships.

A Guwahati-based college student pursuing her Masters in Tata Institute of Social Sciences, Bidisha started the #BleedwithDignity campaign on the technology platform, demanding that the Government of Assam install
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