Ewing’s Sarcoma Cancer Diagnosis
I am Bhumika. People in my NGO know me as Bhumi Ben. I reside in Ahmedabad, where I work at an NGO as a caregiver. I am a cancer survivor. In 2001 when I was 11 years old, I got diagnosed with a soft tissue form of Ewing’s sarcoma cancer called sarcoma cancer. It took three years, but I was finally able to beat cancer in 2003. I had a tough time during those three arduous years. Initially, I went from one hospital to another, looking for treatment. Thankfully, I belonged to a family with an air force background and visited a civil hospital to get treatment. The entire procedure was quite a struggle.
It was a tragic time for me as I had missed two years of my education. I stopped playing with my friends because I was fragile and many of the other children’s parents stopped them from engaging with me. It was heartbreaking to sit on the balcony and watch them play. I participated in GCRI events like the kite festival and would often show up at any event under the sun. The feeling of isolation stuck with me, and after I beat Ewing’s sarcoma cancer, I decided to help children. I started working at an NGO which helped children with all their needs, such as nutrition and shelter. The goal is to help out every child in need. We also impart education to ensure that the children do not lose their childhood.
I had a few early symptoms of Ewing’s sarcoma cancer, but none of the doctors I visited had diagnosed me with cancer. I had piles early on, and for a couple of years, my stomach used to ache continuously. The doctor pointed out that I had frequent swelling and prescribed medication for this. They didn’t diagnose the swollen lymph nodes as Ewing’s sarcoma cancer. The treatment cured my stomach ache, and I always assumed I was perfectly fine after the medication. In January 2001, my legs started hurting. I initially massaged them, the Pain subsided. So I went about my day as nothing happened. Later in the day, I started Vomiting and had constant Pain in my legs. I remember taking a lot of Pain killers, but nothing seemed to reduce the Pain.
My reaction to being diagnosed with cancer
It may seem shocking, but I wasn’t aware of my cancer until I was 18. I was a child way back when I was diagnosed, so I didn’t understand what was going on. Only my elder sister and my father knew about it. They would take me to the hospital for regular check-ups, and I had no idea why. I always asked my family the reasons for the hospital visits, but they refrained from telling me about Ewing’s sarcoma cancer since I was just a kid. At the age of 18, I had gone to a doctor for some personal reasons. Only then, the doctor had informed me that I had been diagnosed with Ewing’s sarcoma cancer when I was 11.
I was very vigilant growing up. All I thought about was that I don’t want to hurt myself anymore. And if I felt no Pain in a day, I would assume everything was alright. After my first chemotherapy, I thought I was alright. I immediately thought everything was okay and thought I could leave. My main focus was stopping the Pain and when my Pain ended. I had won.
Whenever the doctor came by, I asked him redundant questions like when to go or what I should eat. I want to get better faster, so what do I do? The doctor often scolded me for picking his brains. The irony is that now we both work together. Every time there is loud laughter in the hospital, he knows that it’s ‘Choti Bhumi.’
Emotions during the treatment.
I didn’t go through such a traumatic experience as I was unaware that I was diagnosed with cancer. I would get very frail and easily irritated after Chemotherapy for Ewing’s sarcoma cancer. The major thing that caused Pain besides the cancer was that I never got to play with other children. I would often curse them from my balcony. What helped me during these days was my family. I had two sisters and a brother, all of us played and had fun during this time. When I went back to school in the 8th standard, many of the students went ahead of me. I was a scholar in the 6th standard, but I was lagging in the 8th standard. During that time, my arms hurt, and I used to request my friends to do my homework. There were many times when I got punished for not finishing my homework and stood outside class gloomily while all my friends were inside.
I didn’t make any lifestyle changes. I always ate everything, and I continued to do so. I was thin back then. After the chemo, I gained a lot of weight. The doctors said that I had to lose weight because being too skinny or fat is unhealthy and even worse when suffering from cancer.
A side effect of Ewing’s sarcoma cancer that affected me the most was the loss of hair. Thankfully, I never went through severe impacts of cancer, like the inability to eat and blandness. I went through Hair loss four times, and I felt like my hair had betrayed me every time it would drop off. Vomiting and blood in my urine was a common sign at the time.
What I learned
My advice to everyone is to have a goal during this time. Go for treatment, and listen to your doctor. You ought to be treated with empathy and not sympathy. As a caretaker, I started teaching women who were not working on stitching and earning a livelihood. I shifted to volunteering at candidates’ kids, and six months later, I started working there.
I established bonds and connections that will last a lifetime. Partnership with the Make A Wish foundation helped me get the children whatever they wanted. We got a child a cycle and another television. A 2-year-old child, when I visited during the pandemic, recognized me with just my cheekbones. It was a very touching moment for me.
Children are wary of strangers, but I established a connection with them. It helped me as they could pour out their bottled-up pain, and in return, I could encourage them to take up healthy practices like yoga, exercise, and a healthy diet. There was a child named Aryan who suffered a lot because of his cancer. He had difficulty in eating, but we were the best of friends. He shared his Pain with me, and thankfully, I was able to help him deal with it. Sadly, the child had a meager Platelet count and passed away. That day I learned how death takes away a soul, and I pray that none of the children under my care have to go through this.
Lastly, I would like to say that you should positively approach anything in your life. Remove negative thoughts and treat yourself well. The doctors can only help you with your cancer, but your mental health is in your own hands. Instead of bowing down to a situation, you should be resilient and believe in yourself. Taking your medication properly and adhering to the doctors’ advice will help you win your cancer battle.