“Did you hear about little Anita, how is she doing?”
“She doesn’t have much time left. Things are not looking good.”
“You remember Mary. She passed two weeks ago.”
“Raju also passed away last month.”
“Aruna refused to let go of my hand for almost three hours. She was so scared to die, she just held on for as long as could until she finally passed away.”
This was the discussion Cedric Morris was having with a social worker as I sat on the backseat of Morris’s car, headed to the home of a breast cancer patient in Bengaluru.
Fifty-one-year old Morris counsels cancer patients to help them cope with the disease. Morris knows a little about what his clients are going through. Eight years ago, he was diagnosed with fourth stage follicular lymphoma, a cancer that affects the white blood cells. He was given six months to live. But he survived. “It was purely God and my willpower,” he said.
I got in touch with Morris to seek his help for a story I was doing on breast reconstruction surgeries.
Listening to this conversation left me deeply unsettled. It reignited thoughts I had been battling for a while. As their updates continued, I began to worry that the article would be too disquieting for me to do.
Over the last year, I have been tossing around questions about life and death. The pandemic, personal struggles, small ups and sudden severe downs had all taken their toll on me – as it had the rest of the world. I had managed to take everything in my stride.
But when I was diagnosed with tuberculosis, a month after I landed a brand new job at Scroll.in, I found it difficult to accept. It made me furious and broke my heart.
It started in June. As I was reading something on my phone, I put my hand on my neck and felt a tiny lump. I waited a week to see if it would go away. Then another one appeared right next to it.
The neck scan was inconclusive, I had to have a biopsy done. As I lay down on the hospital bed and one needle after another pierced through my neck, I heard the doctor sighing loudly. With every disapproving sound that escaped his lips, I shut my eyes tighter. A few hours later, the results landed in my inbox.
The next day, the doctor told me that I had lymphadenitis tuberculosis. He asked me not to worry about how I got it, because it was extremely common. He assured me that I would be completely fine since it hadn’t affected my lungs. Six months of treatment and I would forget I ever had it, he said.
I was relieved. But the word “tuberculosis” felt heavy and intimidating, it was difficult to not feel scared. I came home and spent the next few days learning all about the disease. All the research I had done on tuberculosis as a journalist seemed to be of no use to me, I needed much more information now.
I started reading up about how young people these days are increasingly being affected by tuberculosis because of high stress levels. Stress could have brought down my body’s immunity too, the doctor said. That made sense to me. But I was far more concerned about trying to find out why the bacillus had chosen me.
Life, death in a pandemic
When Morris, the social worker and I pulled up at the home of Sandhya Joseph, a breast cancer patient, I was nervous. Morris had told me that Joseph had very little time left. I immediately become uncomfortable and told him that I did not want to disturb her for this story if she was already going through so much. But he urged me to just visit anyway. Joseph, a teacher, had struggled for several years. She was scared yet hopeful.
When we were returning from her house, I asked Morris and the social worker how they managed to sleep at night after spending all day with cancer patients.
“How do you spend everyday, walking in and out of hospital wards and homes of little children giving them hope, whilst knowing fully well that they’re dying?” I said.
“I actually sleep better on the days I know I’ve done all that I could to give people hope,” said Morris, smiling.
“I guess it is knowing that they no longer feel pain,” the social worker said.
Instantly I thought, “Why should they have been in pain in the first place?” But I remained silent.
A month after I started medication for tuberculosis, I realised the lymph node had not reduced, but in fact grown a bit more. Google Scholar told me that stress could also delay recovery. The doctors agreed. I had become obsessed with checking on the lymph node every morning as soon as I woke up, hoping the swelling had disappeared. This was increasing my stress levels and slowing down my recovery. I was so paranoid about not letting the disease affect my work that I managed to get myself more stressed.
I went from being a person who strongly avoided medication to now carrying around a purse filled with tablets. My day started and ended with reminders to take my medication. My meals, my interviews, my field trips all revolved around it. But I had no side effects and except for the medication, I had nothing to remind me of the fact that I had the disease.
Mentally, though, I wasn’t doing too well. When I finally confessed to my editor about everything that was happening to me, she immediately asked me to go on leave. “Health before work,” she said.
When I returned after a short break, I felt better but had the same thoughts swirling around. I wanted an explanation for why this had happened to me. But when I met Morris, it suddenly struck me: there was no logical reasoning for why five-year-old children get cancer and die. Tuberculosis cannot ever be compared to cancer, especially not the one I have, but I suddenly had a realisation: this is just life.
Having the disease has also helped me perceive the healthcare system differently. Looking at it from the inside, in a way, has made me feel like I can be a better reporter. I feel more driven to write about healthcare in this country.
One morning, a couple of months ago, I noticed that the lymph node had disappeared. My medication was reduced. Eventually, I started doing better. Then last week, my doctor finally told me I could stop my medication. I’ve now fully recovered.
The names of all the cancer patients in this article have been changed to protect their identities.
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