Sanjay Deshpande (Brain Cancer Survivor)

I work as a learning designer by day and do cancer advocacy work by evening. The first symptom I encountered was in April 2021, when I had a grand mal seizure. This looks like a typical seizure, where you lose total body control. My parents are doctors, and they ran some blood tests on me, and the results came back normal, so we didn't have a reason to do an MRI test. Diabetes runs in my family, so we concluded that I had the seizure because of low blood sugar levels. 

In August 2021, I left for America to do my Masters at Harvard University, and on my first day, I had another grand mal seizure on campus. The seizure was so bad that I stopped breathing for five minutes, and I was rushed to the hospital, where they did a CT scan and found something wrong in my brain. I was shifted to the Harvard Hospital, where they did an MRI scan which showed a tumour in my brain. The doctor sat me down and informed me that I had glioma. 

I understood that it was a type of brain cancer and that I would probably only live for five more years. The doctors told me that I needed to get surgery done immediately, but I wanted to return to India for the treatment. So, My dad and I spoke to the neurosurgeon and convinced him to discharge me. The hospital made me sign a waiver stating they are not responsible if something happens to me.

The entire process was terrifying. I had just unpacked all my things in the hostel, and I had to repack them. My sister was also living in America, so I went to her place before moving to India for treatment. 

My family's initial reaction to the news

When the MRI results came back and confirmed that I had brain cancer, I was already sedated in the ER as a precautionary measure so that I didn't have more seizures. When I woke up from the sedation, my phone did not charge, and I had not availed international calls on my phone. So, I called my brother-in-law, who told my sister the news. My sister broke the news to my parents in India.

I later asked them how they felt when they heard about my disease, and they told me that they almost had a heart attack and couldn't stop crying until I returned to India and began the treatment.

My treatment process

As soon as I moved back to India, I consulted many doctors. After getting the opinions of many neurosurgeons and medical and surgical oncologists, we concluded that I needed to get surgery to remove the tumour. The plan was to remove the tumour and send it for biopsy and, based on the results, plan the course of treatment. 

Although we met and consulted many doctors, I was uncomfortable with most of them, and we finally settled on a doctor from Hyderabad. He did an excellent job on the surgery. The surgery was set to take place on 28th September 2021, and I was done with it and back home in two days. I was discharged that soon because the tumour was not in a place in my brain that was responsible for any critical function. 

After the surgery, we had to wait for around twenty days for the biopsy results. The reason for such a long wait was that the type of cancer I had was rare. The biopsy results showed that I had grade two oligodendroglioma. We consulted the neurosurgeon, and he told me that there was nothing we had to do now except to wait and watch for any recurrence or regrowth of the tumour.

Supplementary treatments that I took after the surgery

Although the chances of recurrence are high with the type of cancer I had, the neurosurgeon told me not to worry too much because I had all the favourable traits. I was young and did not have any comorbidities, my family did not have a history of cancer patients, and I also had the molecular structure that would respond well to the treatment in case I had to go through the treatment again.

All I had to do right now was maintain my health. After the surgery, I started practising yoga and consulted with naturopathy and Ayurveda doctors to take some supplements that would strengthen my body. I also consulted an onco-nutritionist from ZenOnco.io to structure a diet plan that would be suitable for me. 

I learned a lot of things about the food I consume through my consultation with the nutritionist. I understood that foods are proven to reduce cancer recurrence and that adding them to my diet would help me. I have made a lot of changes in my food practices. I have entirely avoided all junk and packaged foods. I know that I am pre-diabetic, so I have switched to brown rice, cut off wheat and sugar from my diet, and switched to millet and pink salt. 

My mental and emotional well-being through cancer

I have my therapist to thank when it comes to managing my mental and emotional health during the treatment. When you are diagnosed with the disease, the initial stage flies by, focusing on the treatment and how you get through it. But when the treatment comes to a conclusion and you have to resume your life, all the things that you put on hold come crashing back,

I noticed that, especially for young people, when life is at its prime, cancer comes as a big shock. You are stuck with cancer when all your friends are partying and building a life for themselves. My therapist helped me process all these emotions that I was feeling, and I strongly recommend anyone going through this journey make sure they have a therapist who will listen to them and help them mentally. 

I had already seen a therapist before cancer for some other issues, and this journey made me understand more deeply the importance of addressing one's mental and emotional health. I also realised that this was lacking amongst patients in India. 

This inspired me to take the initiative to put together a book that talks about the journey of ten young people and their experiences with cancer. This book answers very salient questions overlooked when dealing with such a big disease. It is due to be published in December 2022, and I believe it will give the readers a new outlook on life with cancer.  

My message to people like me

While going through this journey, I had to make a lot of changes, and through all that, the only thing that kept me anchored was this book I was writing. It was a sort of bibliotherapy for me. I have come to understand that everyone is going to die someday and what matters is that you make sure to live today to the fullest, and that would be my message to people going through this process.