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Submitted by Dr S. Patel on 4 July 2018
Sandeep is an Ewing Sarcoma survivor and is currently a Patient Navigator. Here he is sitting in a colourful play room for children with cancer

Sandeep, 25 was diagnosed with Ewing Sarcoma at 12 years of age.  He saw his father cry quietly in the bathroom. Nobody told him what to expect.  His experience motivated him to work with cancer patients as a Patient Navigator at Cankids. And 5 tips for children facing cancer.

I am a Ewing Sarcoma survivor! I was diagnosed at the age of 12.5 years.

Early symptoms

In September 2006, I started getting pain and some swelling in my right upper arm. Initially I never told anyone because I was notorious for fighting with other kids. But after 10 days, I told my mother who applied turmeric and onion powder for healing. When there was no relief, my father took me to a local doctor who gave me pain injections. 20 days after that, we went to a District and then a Zilla hospital, where X-rays were done but we got no diagnosis or pain relief. 3 months had passed and the pain and swelling both increased. In Gorakhpur, a cancer center did a biopsy and told my father that arm would have to be amputated. With a very heavy heart, my father decided it was time to bring me to Tata Memorial Hospital (TMH) in Mumbai. On 6th of March 2007, after undergoing a series of tests, I was admitted to TMH.

At the time, I had no idea what was going on, I had heard the term tumour and knew that’s what I had. Once while in OPD, I saw an older man doing Kapalbharti (yoga breathing exercise). I had never seen anything so strange and started laughing at him. He opened his eyes and explained to me that doing this would cure him of his cancer. I told him that I did not have cancer, only a tumor. He laughed back at me, revealing to me for the first time that cancer and tumor were the same thing.  I was just 12 and didn’t know how to deal with that fact.

Negative Talk and other Challenges

My father was my biggest support and was with me through it all. He would often go into the bathroom to cry, which made me think that something was seriously wrong. Since I have 3 other siblings, my mother had to stay back with them in the village. She came to visit me once during my surgery. Back home, villagers would pester her a lot with pessimistic thoughts like "no one survives cancer, etc". She would be upset for days and cry. Finances were also a challenge so my father applied for state funding and that was helpful.

Course of treatment

My first Chemo session was on 28th of March. I remember getting all the side-effects of Chemo from nausea, vomiting, joint pain, mouth sores, weakness, insomnia, hair loss, low appetite, irritability and even anger. At that time, my father and I were living with my uncle where the living condition wasn’t very hygienic, so we were transferred to ACTREC’s housing facility. I was given 6 rounds of Chemotherapy and then surgery was scheduled once the tumor had shrunk. I was naively smiling while getting wheeled into the OR, with full faith in my doctor. I had a bone graft on my upper right arm. My right arm was stiff, numb almost non-functional, it was 6 months before I could write again. During surgery, about 99% of the tumor had been removed and I got 8 more rounds of Chemotherapy.

In the Chemotherapy ward, I would often notice that patients would go missing the next day. I soon realized that what it meant was that, they had passed away. No one had sat me down and explained to me what I had or should expect. There was no counselor, social worker or survivor volunteer at the hospital who spoke to me directly. But I had full faith in my treatment and certainty of getting better. I decided then that I would want to work with cancer patients when I got older.

Post treatment

After a full year and 2 days, I returned to my village on 8th March 2008. In 2012, I joined UGAM, which is a support group for childhood cancer survivors. Due to financial constraints at home, I started working in a Network Marketing Company near our village. However in 2015, UGAM invited me for a National Survivor meet at TMH where I met other survivors and was amazed to see that they came from all walks of life. I had found my calling and enrolled in a 6 month Psycho-oncology caregiving course at TISS. It gave me a chance to spend time in each Oncology department and learn about social work. After the course, I started working with V Care foundation along with correspondence BA degree course in Sociology. Since completion of my degree, I have joined the NGO, Cankids as a Patient Navigator & Facilitation executive.

Present condition

I am in complete remission with full functionality in my right arm. For the initial 3 years, my follow-up appointments with my Oncologist were every 3 months. It then became every 6 months till I reached the 5 year mark. Now it’s every 2 years and includes a blood test and X-ray.

I am working full time in Mumbai now and love to meet and network with people at work. I try to swim, meditate or do yoga regularly and have no food restrictions.

My advice to kids facing childhood cancer would be to

  • Don’t worry and never lose hope!
  • Listen to your doctor.
  • Comply with your medicines.
  • Eat and sleep well.
  • Stay happy and focus on getting well.
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