My life took a sharp turn one day in April 2022 when I felt a crushing fatigue, something that I had never experienced before. As a few days passed, I noticed more discomfort, including a persistent low-grade fever, nausea, vomiting, and loss of appetite.
What followed was a battery of tests, scans, hospitalisation, and eventually a biopsy with molecular testing that led to the diagnosis of Stage 4 ALK-positive lung cancer, also known as non-smokers lung cancer.
I had never heard of the disease. Neither had some of the doctors for that matter.
My husband was initially told that it was a gastrointestinal tract cancer – and I probably had no more than six months to live.
That diagnosis and prognosis, of course, proved to be wrong but even so, the discovery of ALK-positive lung cancer was no less devastating – it is an aggressive and fairly poorly understood adenocarcinoma.
I had spent my life advocating for the health and well-being of others, and now I was faced with a life-threatening illness myself. I was told that you would be “lucky” to survive five to seven years. I was only 35 years old, a non-smoker, a teetotaler, health conscious, and absolutely fit! How could this be true?
I had always viewed myself as a problem-solver, someone who could control outcomes through my hard work and determination. But not on this occasion. I felt completely vulnerable, grappling with a disease that didn’t obey any logic or rules.
Living with Cancer
My initial reaction was utter shock that lasted for several weeks and months. I was given an oral targeted therapy, and while the physical manifestations of the disease became better as the days passed, my mental health was in a state of total disarray.
I was dealing with severe depression, anxiety, and suicidal ideation. It was only when the doctor put me on an antidepressant that I started to get some of my quality of life back.
I have faced the inevitable challenges that come with a cancer diagnosis – managing the various side-effects of treatment as well as the endless doctor visits and tests. Many days, I feel like giving up.
Life has become overwhelming, with countless moments of fear, anxiety, uncertainty and immense sadness. The unfairness of it all always looms large.
Why me?
My mother is my primary caregiver, alongside my husband. It pains me to see her sitting up late at night researching the latest advances in the treatment of my disease. At nearly 70 years of age, this is not the peaceful retirement I had hoped for her. Cancer takes a huge toll on the ones most closely connected with you.
I’ve tried to remain a social person even during this challenging time and continue to have several friends. However, my relatability to my peer group has diminished considerably because while they are dealing with issues related to their careers and families, I am dealing with life and death on a daily basis.
Hence, even when surrounded by people, I often find myself to be very alone.
Sharing is Caring
For me, the most important thing is empathy and kindness. I endeavour to make a meaningful difference in the lives of people, especially those who are disadvantaged and cannot express themselves at the platforms that I can.
My experiences as a cancer survivor have given me a unique perspective on health policies and the struggles faced by patients in India. I am able to understand the system’s gaps even more intimately now.
Cancer is not a notifiable disease in India. That means that we are hugely underestimating the actual burden of the disease. How can we tackle this menace if we fail to even acknowledge the full scale of the problem?
Another major challenge is that many pharmaceutical companies are reluctant to bring their clinical trials to India.
For instance, there is a company doing groundbreaking research in developing a fourth-generation anaplastic lymphoma kinase or ALK inhibitor which can be lifesaving for people like me should our cancer become resistant to Lorlatinib (a third-generation inhibitor and the most advanced drug currently available in the market).
However, after the US and Europe, the company has chosen to conduct trials in a small city-state like Singapore, while ignoring the world’s largest patient population i.e. India.
While I’m hoping that Lorlatinib continues to work for me, should I need an alternative, the only option I currently have is to go to Singapore to enroll in the clinical trial. Is that easy? Who will fund me to go there? These are concerns that torment my family and me every single day.
Cancer is not just a physical disease. People often don’t realise the tremendous mental, emotional, social and financial toxicity that comes with it.
For example, Lorlatinib can cost between Rs 1.5 to 2.5 lakh per month depending on the dose one is required to take. This is just one medication. When you factor in the costs of diagnostics, doctor visits, and additional medications to manage the side-effects, it becomes completely unaffordable for most of us, not just the poor but even the middle class.
Why can’t we develop innovative drugs that are accessible to 1.4 billion people? I passionately advocate for policies focused on cancer awareness, early detection, and improved access to affordable treatments.
I share my story openly at conferences, hospitals, and awareness events because I want people to know that cancer is not a certain death sentence – and that life beyond the diagnosis can be meaningful and impactful.
Empathy, Not Sympathy
I also wish that we can change the vocabulary and snap judgments around cancer. I often get told that I don’t look like I have cancer.
The reality is that there is no particular look that a cancer patient has! People say things that in their head perhaps seem right, but their words often have totally the opposite effect on someone living with the disease.
Cancer patients aren’t “strong” or “brave”, we simply have no choice. Cancer isn’t because of “bad karma” either.
For many people, it’s a totally random and unexpected occurrence that happened despite them following the best possible lifestyle.
I wouldn't be lying if I said that I've cheated death on quite a few occasions. Self-fulfilment and whatever gives me a sense of purpose, that is what I try to pursue. But I have my fair share of bad and hopeless days. People say things like “live in the moment”.
The reality is that it's incredibly difficult to live like that when you have a sword constantly hanging over your head. I’ve learnt to be kinder to myself and allow myself to feel the whole array of emotions that I do.
On most days, I live in hope that the disease will be cured soon enough for too many of the best people have already lost their lives to it.
On this World Cancer Day, I wish that we set aside the pink balloons and ribbons and demand real change from those in power who are shielded from the struggles faced by ordinary people.
(Urvashi Prasad is a Public Policy Specialist with NITI Aayog. She can be reached at @urvashi01. This is an opinion piece. The views expressed above are the author’s own. The Quint neither endorses nor is responsible for them.)