A for apathy, B for blabber and C for cancer – say cancer, it will set you free

Multiple Myeloma is an incurable form of blood cancer. I live with it. I advocate publicly for access to treatment similar to what I have access to in Switzerland. I will not stop asking questions of people who say I am a dreamer. Since when was that prohibited? To those in India, especially the educated, who continue to use the 'C' word, this is what I have to say. Use the right word. Cancer. Words influence thinking. When a word enters the language, it becomes powerful.

My acquaintance with cancer started abruptly like almost everything in my life, in the middle. I was in a slew of projects in India and Switzerland. One fine morning in Delhi in the summer of 2011, I was unable to get up from the bed and go to the bathroom to brush my teeth. The distance was four steps. Our daughter Nitya, who had returned late from a modelling assignment, was still asleep.

I crawled to the bathroom to brush my teeth. Standing up to find the brush, toothpaste and water hurt so much, I cried. Strange, I thought, telling myself I needed to do some yoga to get skinny me – I had become skinny – to build muscles and endurance. I am born lazy.

I rang Dr. Sanjiv Jain at NIMHANS in Bangalore. He is a psychiatrist but for all of us in the family and friends circle, he’s the go-to person for any ailment we have. Get an MRI done he said. He saw the MRI results and asked me to get on the first plane to Geneva and show my results to the doctor with his diagnosis – Multiple Myeloma. Behind the scenes, Nupur Basu and Revathy Ashok in Bangalore, Coomi Kapoor and Jaya Jaitly in Delhi ensured that I was on the first plane. “Look over your right shoulder,” my former boss and best friend Coomi Kapoor told me as I left her home for the airport. Strange, I thought - I had never known her to be either religious or superstitious. So much drama I decided as I settled into my seat in the plane. Good heavens, my lower back was hurting rather badly – so badly that I could barely sit.

Back home, Giancarlo my husband and Nikhil our son rang our family doctor even as I was heading back in urgency. From the airport to home, I was telling them it was a sprain and would be fine after a little rest. What I did not know was that I had a tumour in my spine and the family doctor had advised that I be taken immediately on arrival in Geneva to Génolier, a clinique close to where we live.

I wasn’t looking forward to a ride in an ambulance with flashing lights. My doctors in Switzerland would tell me later they knew Indian doctors were brilliant but Dr. Jain diagnosing MM with just an MRI was in another league.

We came home. I couldn’t walk even as I pretended I could. I am tall, so the hunch was obvious. Giancarlo and Nikhil said I had no choice – they had already prepared my bag to go to Génolier. The world-renowned haematologist and oncologist Dr. Volker Kirchner came to see me at 10.30 pm the day I was admitted.  “It’s a serious diagnosis, but we can fight it,” he said. I imagined a boxing ring and me as chief clown.

The worst thing you can do when you have a difficult diagnosis is to go to the Internet. Which is what I did.

Dressed in hospital clothes, I went with my computer to the nursing station to ask what the brouhaha was all about as I had Melanoma. No, they told me. I had Multiple Myeloma (MM). Back to my room, some more Internet and major panic hit me.  The next morning was long before the doctor arrived, my questions were ready, faster than any rapid fire round you can imagine. The day was full of visits by doctors who told me they were going to help me fight MM and they have what it takes to do so. I called Coomi Kapoor, worried about Nitya. She told me Nitya was safe and I must stop giving instructions from a hospital bed in Switzerland.

In the fall of 2011, I had an autologous stem cell transplant. Different from an analogous stem cell transplant where a member of the family or donor donates blood and stem cells to you, technology and science has developed procedures where people with an MM diagnosis can, if possible, use their own stem cells.

Here’s a 101 on what stem cell transplant means: Our bone marrow is the organ that produces our blood cells. The marrow and our blood cells constitute our hematopoetique tissue. These tissues are white and red blood cells and platelets. These are produced and liberated in our blood circulation throughout our lives. Stem cells are mother cells for all blood cells. They live in the bone marrow. These are harvested when you have an autologous stem cell transplant and maintained in a freezer.  

Before this harvest and ‘cleaned’ stem cells are introduced back in my blood-stream, I went through an intensive chemotherapy that, unfortunately also destroyed the healthy cells. To speed up the reconstruction of my bone marrow after chemotherapy, my cleaned up stem cells were introduced back into my blood-stream – this is what is called an autologous transplant. The cleaned up stem cells migrate naturally and reconstruct the bone marrow. That transfer period is critical for survival. I had zero immunity, the supply of oxygen was up and down and contracting infections was a major concern as was fatigue.

Here I am, eight years later supported in no small measure by my family and a small circle of friends key among which is Lisa Ray, herself an advocate for MM. I read her Yellow Diaries as I lay in a hospital bed, telling myself if she could do it, so could I. Here’s why going public is important. Here’s where we in India need to speak about cancer and mental health, vitiligo and diabetes without stigma and fear. Lisa I have developed a close bond over the years, not only because we live with MM but also because in more ways than one, our diagnosis has set us free to appreciate what is real and what false. I also have a small group of friends where I live – more women than women – where we can laugh, cry and joke about our cancer.

I am lucky to live in a country where my health insurance takes care of my expensive treatment. I am fortunate it is Dr. Kirchner who is my doctor – the first treatment he made me go through was the best. I advocate for access and treatment in situations like in India where people don’t even want to speak about their diagnoses, much less reach out or help. I am thankful for American advocacy especially that of Kathy Giusti (herself an MM survivor) of the Multiple Myeloma Research Foundation (MMRF) that has reduced the time from molecules to treatment significantly.

Cancer has made me realise every minute, every hour and every day that people who are fortunate to have access to treatment have so much to be thankful about. I dare say they have a responsibility to push politicians and policy-makers to make treatment available to all people, wherever they live and however remote their situation is. We speak about this often at home. Nitya who is a mechanical engineer now reading law and Nikhil, who is a policy and market analyst with a focus on public health speak about access and responsibility more often than before.

We in India do not speak out about our medical diagnoses. Irrfan Khan and Sonali Bendre speaking out about their cancer and Deepika Padukone and Anupam Kher explaining their encounter with mental health issues render yeoman service to public health. I know of so many cases in my country where people call me for advice on cancer pretending it’s for someone else. The details of their questioning and depths of fear leave me wondering if they just want to speak to someone who publicly speaks about cancer to address their own diagnosis.

It was not until recently that my doctors told me I had arrived in a pretty bad condition in 2011. It was touch and go they said. It was even more recent when Coomi told me Parsis believe that looking over your right shoulder when you leave a place means you will return to that place. Faith has so many ways of speaking to you if you believe, as Lisa says, that the universe is your friend.

Grief shared is grief halved. Think how much easier it would be for you if you share your grief. Cancer is not a death sentence if you can afford treatments. In some cases, it is being treated as a chronic diagnosis, much like diabetes. So many of our ministers in the central cabinet and state governments live with non-communicable diseases (NCD cancer, strokes, diabetes, chronic respiratory diseases etc.). India’s double disease burden, NCDs and communicable diseases (HIV/AIDS, Malaria, TB, diarrhoea etc.) are claiming lives faster than solutions can be reached.

India’s development agenda will be incomplete till it refuses to address its public health crisis head-on. That means fewer speeches and press releases and more resources on the ground.