The hidden cost of cancer in young adults

‘Don’t Ask Me How I’m Doing’ tells the story of many young adults who have survived cancer or cared for people with the disease and how it has changed them

Falah Faisal NT

Bengaluru: Imagine a scenario where you arrive in a new country to study, or are about to start a new job or raise a child, you feel unwell and go in for a checkup and receive the worst news ever – that you have cancer. Imagine your world coming crashing down, while you are at the peak of your life and there are very few resources that you can look to for help.

That’s the story of the survivors and caregivers who have co-authored the book ‘Don't Ask Me How I'm Doing: Life, death and everything in between. The book project was spearheaded by Sanjay Deshpande who got diagnosed with cancer the day he arrived in Boston to attend Harvard University at the age of 29 and had to rush back to India for treatment.

“Most people don’t realize that young adults get cancer too. As soon as I was diagnosed my family told me not to tell anyone because there’s the taboo surrounding the subject and thinking about mortality makes people uncomfortable,” said Deshpande, who had to undergo a 7-hour surgery on his right frontal lobe to rid himself of cancer and then had to re-learn how to use the left side of his body.

“After the surgery, when I looked for support groups I realized that there were many groups for parents of children who’ve got cancer and for caregivers for geriatrics with cancer but nothing for young adults that cater to people between 17 to 39. There was this gap in the healthcare system that needed intervention,” he explains what inspired him to write the book. In order to do so he put up a social media post looking for others like him who had stories to tell.

Among the people he found was Aditya Arun, who had not only been diagnosed with cancer at a young age but also took care of his grandfather during his battle with cancer and wrote a chapter about the real and surreal aspects of it. “What you have to realize is that this isn’t a selfhelp book but honest accounts of people who have dealt with cancer and survived.

What I had to keep reminding myself throughout the journey was ‘fear is the mind killer’,” said Aditya who has also written a chapter about managing your finances while dealing with cancer. Another shocking fact is that in a country of 1.4 billion people, there are only 15-20 psychologists who specialize in dealing with people with cancer and caregivers.

“There is a roadmap for treatment but no roadmap for recovery. In the book, we also have the story of a woman who after being used as a guinea pig by allopathic doctors for years has decided to look at alternative treatments even though she had stage 4 cancer and others who are living with it each day,” said Deshpande in the chapter of the book titled ‘dancing with death which deals with coming to terms with one’s own mortality.

Deshpande explained, “These stories need to be told because no one acknowledges that this population exists. All the books either talk about cancer with battle language or with toxic positivity and if you die, that is seen as a failure. We want to tell people that you don’t have to be a hero or role model to others, you don’t need to achieve anything except your own wellbeing,” who believes that youth isn’t wasted on the young but health is wasted on those who aren’t aware of their own mortality.

Don't Ask Me How I'm Doing: Life, death and everything in between is published by let’s author Books.