(4 Ferurary is World Cancer Day. In light of it, FIT is republishing this story of a stage four cancer survivor who along with her supportive family, embody this year's theme, 'Close the Care Gap'.)
Video Editor: Purnendu Pritam
Video Producer: Saakhi Chadha
‘This is a story of love, hope and courage. This is a story of survival, from six months to seven years."
Kusum, mother of a three-year-old son, was diagnosed with stage 4 lung cancer in 2012, when she was 29. She had never smoked in her life.
She was told by the doctors that she only had six months to live. Yet, she went on to survive for seven whole years. Vivek Tomar, her husband, speaks to us and shares their story of love, courage and survival.
The Beginning: A Series of Misdiagnoses
It was usual for Kusum to experience facial twitches and headaches. She had been told this was all a part of her migraine.
After years of a long-distance marriage, when Vivek and Kusum had finally gotten a home together, Vivek noticed her face twitch at a furniture market. He got concerned and took an appointment with a doctor. After scans and tests, it was found that she had six nodules in her brain, an indication that she had brain tuberculoma.
“We had earlier been told it was a migraine. That was the first wrong diagnosis. Now, we got to know it was brain TB,” Vivek said.
When her condition did not improve despite the painful treatment, and the nodules in her brain increased to ten, the doctor told them something was very wrong. This is when she was finally diagnosed with stage 4 lung cancer, which had already spread to the brain.
This came as a shock to both of them. Kusum had never smoked. Nobody in the family had smoked.
“This shattered the assumption we all hold in our minds, that lung cancer can only happen when you smoke. I want to use this platform to share that lung cancer can happen to anyone who has lungs.”Vivek Tomar
Her Undying Spirit: 'I Will Fight This'
When she got to know she had cancer, Kusum asked the hard question, “How much time do I have left?”
“Personally, I was not ready for this answer. In our minds, cancer means death. It is a big C, you know,” Vivek tells us.
The doctors told them very honestly that she had six months, and if she was very very lucky, it could be a year. But there wasn't a single patient in India who had survived more than that for this type of lung cancer.
They did not speak on the way home. When they finally sat on the bed, Vivek started to cry. Looking at him, she started to cry too. After hours and hours of letting it all out, Kusum kept a hand on his shoulder and said, “We can either cry, or we can use these six months to fight the cancer. Can we not fight?”
That sentence changed Vivek forever.
Unavailability of Drugs in India Became Kusum's Biggest Obstacle
Kusum had a very rare kind of lung cancer called non-small cell lung cancer with ALK mutation.
Her treatment started and she went through chemotherapy and radiation. By November end, she went into a coma. The only drug that could save her was a first-of-its-kind targeted oral chemotherapy medicine that had received conditional approval in the United States. Within one week, they got that medicine for Kusum.
However, she soon developed resistance against the drug, and her condition started worsening. Her face had turned black. The cancer had spread from her lungs to her abdomen, ovaries and adnexa.
“We then got to know about the world’s first second-generation medicine which had become available in the US. But things had changed by that time. India had stopped conducting clinical trials and without trials, we couldn’t get the new medicine.”Vivek
At an oncology conference in Gurgaon, in the presence of doctors, pharmaceutical companies and officials, Kusum stood up in the audience and asked a question, “Is it my fault that I am an Indian?"
“There was pin-drop silence for many minutes. Things changed after this. The clinical trial got approval and on 31 December, Kusum became the first patient to get enrolled in India, and the first patient to get that medicine in the country,” Vivek shared.
But it is stage four lung cancer after all.
She used to suffer from excessive loose motions and vomiting, to an extent that she started bleeding. By the end of 2016, she got a paralysis attack. There was a drug that could save her, but the company had no plans to make or deliver it in India. Vivek started making calls to the government, pharmaceutical companies, doctors and media. When two national media channels ran a campaign and raised awareness, they were informed that the medicine she needed would be reaching India for Kusum, free of cost. This drug, along with Kusum’s strength, improved her condition.
She took the drug on 15 January 2017. In September 2017, a Pinkathon was held in Delhi for women cancer patients. Kusum had already completed five years after her diagnosis by then.That was an Asia record. She said she wanted to run.From being paralytic just months agoshe ran the marathon.”Vivek
Her tee-shirt read: "I am the patient. I am the lung cancer face. If I can survive, so can you."
After a seven-year battle with cancer, Kusum breathed her last in February 2019, her husband and son carry forward her legacy in raising lung cancer awareness, patient advocacy and offering support.
“There is no support system for lung cancer in India because of the low survival rate and stigma. Kusum and I decided to fight. We have a support group. We speak on clinical trials, lung cancer and let people know that anyone who has lungs can have lung cancer. Just understand and stop this stigma. Losing is not an option.”
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