Episode 15: Living life with an incurable brain tumor as a young South Asian with Sanjay Deshpande
When we think of a cancer diagnosis, we focus on the physical ramifications of the disease. But a cancer diagnosis also leads to major financial costs. Today we are speaking with Rosie Cunningham, COO of Family Reach, about financial toxicity, health inequities and tips for patients and caregivers on how to navigate the financial landscape of a cancer diagnosis.
Key highlights:
1.How to live a life with an incurable cancer
2. Using creativity in moments of darkness
3. Creating a cancer support community for South Asians
What we discussed
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About our guests
Sanjay Deshpande
Sanjay is a Learning Designer who currently leads L&D at Pride Circle. He has previously worked as a part of the Founding Team of Harappa Education and the skilling team of NASSCOM Foundation. He is passionate about mental health, queer rights and cancer advocacy.
He got diagnosed with incurable brain cancer at the age of 29 the day he landed on Harvard University's campus to start his Master’s program in September 2021. He's currently leading an effort to write & publish a first-of-its-kind book on Adulting with Cancer called ‘Don’t Ask Me How I’m Doing: Life, Death and Everything in Between’ -- to chronicle the experiences, raise awareness and create a resource for Indian and South Asian young adult cancer patients, survivors and caregivers.
He is an incoming graduate student at Harvard University, a postgraduate of the Young India Fellowship program at Ashoka University, and a Valedictorian and Student of the Year from St. Xavier’s College, Mumbai.
Watch the video of our episode on YouTube
Key Moments
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4 mins and 1 second: In response to the question “how are you?”
When you ask that to a cancer patient or survivor, the expectation is that you're likely wanting to hear the truth. But in my experience, most people aren't ready to hear the truth. They don't want to know that you're struggling, they don't want to know that you're having a mental breakdown. They don't want to know that you are in pain.
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18 mins and 23 seconds: Living life with cancer
Earlier before cancer, the way I used to usually socialize with my friends was over drinks or over a smoke or going out dancing or to a party. Almost all of them I'm not allowed to do. I can't drink because they tried to trigger my seizures. I can't smoke because, hello cancer. I can't go dancing because my skull hasn't healed from my surgery. I can't stay up late at night because it triggers my cancer and triggers my seizures. So how do you then re-enter this world that you were once a part of, and still live a life right?
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30 mins and 3 seconds: About that moment post treatment.
It's kind of like you've you're like running really fast to get to this destination and then you realize the destination is actually a cliff and you're jumping off and you're like ‘oh god I am falling’.
Manta Planner
Manta Planner: Structured medical planner for cancer patients and caregivers. Science-backed tools to track symptoms, make decisions, and stay organized.
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