Sudhir Nikharge (Bone Cancer): Battle With Cancer And Rejection

Travel, badminton, trekking – these were my passions. As an active kid, I used to love roaming around every corner of the house. In December 1992, I went for a trek with my friends. While trekking, I realized there was some swelling around my knee. It didn’t hurt while I was walking, but it hurt when I tried to climb. I had no idea that these were signs of bone cancer in my knee. So when I came back, I visited the hospital for a check-up. The doctors were perplexed. Initially there was no confirmation about the presence of cancer. They said that maybe I had lost fluid between my knee and the swelling was due to friction. After trying out a couple of things, the doctor told us to do a Biopsy.

Osteosarcoma Diagnosis

When the doctors came out of the operation theatre, they said, “This looks like Cancer, we will have to amputate it.” My mom was shocked, and she asked them whether they were sure it was cancer. The doctors suggested we do an MRI scan as a confirmatory test. My mom kept all these things to herself. On March 12, 1993, I went for my MRI. I am from Mumbai and on March 12, I was in the MRI machine when I heard a sound. When I came back to the hospital, it was ravaged with rubble and dust. The bomb blast had shaken the very place that was the giver of life.

Conversation with Caregiver Sudhir Nikharge
Conversation with Caregiver Sudhir Nikharge
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Osteosarcoma Treatment

I was moved to a separate ward and after a couple of days, we got to know that I was diagnosed with Osteosarcoma. Osteosarcoma is a type of bone cancer. Since Chemotherapy is said to be one of the most effective types of cancer therapy, we decided to give it a try. I went through a heavy dose of Chemotherapy for 7 to 9 days. Those seven days were a blur because I was mostly sedated. My only instruction was to drink more and more fluids. So, I used to get up, puke, drink, and sleep. That was my life for seven days.

There were signs of recovery from Osteosarcoma but post-chemo, tiny round things popped up on my body. It was a side-effect of those heavy medicines. New medicines were recommended to treat it. In those days, one cycle of Chemotherapy would cost Rs. 1,45,000, and I went through two of them. Plus, those medicines that were used to treat osteosarcoma cost another two and a half lakhs.

Surgery

On my 18th birthday, on May 20, 1993, I went for a check-up. The doctor said that Surgery would have to be performed, and they were unsure about the outcomes. They said they might have to amputate me, giving me a life of 3 to 5 years. They told me that I would have to survive on a total knee replacement. I told them that I was ready to undergo Surgery in order to get rid of my cancer.

At that time, I felt it was a very heroic thing to do, but as I returned to my ward, the life-crushing realization dawned on me. After the surgery, I wouldn’t be able to do the things I loved; trekking, badminton and everything else would have to come to an end. You were not exposed to stories of any artificial legs in those times, so I thought my life was over. I would live like a disabled, dependent on people all my life. At 18, when most people run towards their dreams, I was running away from them. That’s when I contemplated ending my life.

But, a nurse in the hospital gave me a different perspective on life. She told me stories of people who have lost both legs and still survive positively in their lives. In the hospital, I survived with the help of my friends. They would come early in the morning, read my lessons to me, then go to college, come back and stay till 6 in the evening. They fed me and helped me recover. People told my parents many nasty things like it was due to their bad karma that I had cancer. But, my mom was my source of strength. She stood by me like a rock

Post-surgery

I realized I had to put up a brave front because if I broke down, my parents would not be able to carry my burden. I recovered from osteosarcoma and had to wear a calliper, a metal bracket worn by polio patients because my knee wasn’t strong enough to take my weight as I had gone through a total knee replacement (TKR) process. I missed a year and graduated in 1995. While I was doing my graduation, relatives would tell my dad to get me a disability certificate because then I would work on a phone booth to survive. People said that since I had a limp, I wouldn’t get any good jobs. My dad would believe such things and forced me to get a certificate.

I didn’t want to do it because I knew that I could do better in my life. My dad and I had regular fights over this. My relatives were trying to help, but it was more from social sympathy. I told my mom, I will only use my disability certificate if I become mentally disabled from fighting my cancer. By then, I had gained some strength, and so I was free from the calliper.

Financial troubles

My father owned a small shop in Pareil while my mother was a homemaker. We were three children with my elder sister, me, and my younger sister. The treatment had left us drowning in debt. My parents had to repay the money they had borrowed from people. My parents couldn’t afford another year without me earning. My dream of becoming a marketing or advertising professional ended there. I started working with a CA and then got an opportunity to work with a standard chartered bank. Throughout this time, I kept going for my regular check-ups.

Again on May 20, my friends came over, and the day passed. The next morning, I realized I couldn’t stand. I called my parents, and I was rushed to the hospital. I was lifted with the bedsheets since I couldn’t stand. We found out that the TKR had broken.

There are two parts attached to the thigh bone and the other to the calf bone. They treated the part that was broken. The upper piece was of smaller measurement and so I suffered a lateral lag. My knee would bend sideways like a pendulum to the extent of 15-degree to 20-degree. Since I couldn’t walk with that, the calliper was back. I had to wear padded shoes because it led to my shortening by two and a 1\2 inches. We knew it wouldn’t work, so the doctor suggested another surgery, which would cost around three and a half lakhs.

By that time, we were broke, and so at night, my parents discussed that they would sell the house and shop to live in the village while I could live here with my uncle. Our doctor advised us that through medical social work (MSW), we can raise money. In 1999, I got operated, and the TKR was much better.

A new beginning

After that, I went through multiple roles in different companies and finally joined a Singapore company. I met my wife through a matrimonial site. She was a Biotech MBA from Pune. In 2011, we were blessed with my daughter Anvita. When she was about 7 to 8 months old, we noticed a white spot in her eye while clicking pictures from certain angles. This was one of the symptoms of cancer in children.

Our Daughter’s Cancer Diagnosis

When we consulted a doctor, she said my daughter had retinoblastoma, a form of cancer. They would have to do an enucleation and get her an artificial eye. We were shocked, and I started thinking about whether it was because of me that my daughter had cancer? I took a second opinion where I was told to go back to India since enucleation surgeries were best in India.

Treatment

We didn’t want our daughter to have an artificial eye, so we tried every possibility. We researched different types of cancer therapy.She started her Chemotherapy due to which she lost her hair. The retinoblastoma had gone after six cycles, but it kept coming back. Finally, the doctor told us that enucleation was the only way as more Chemotherapy could leave spots on her face and it could also damage her retina leading to loss of natural vision. She went through enucleation in 2014. She has a prosthetic eye, and now she is in grade four, enjoying life.

We have been very open about our story, although people advised us to hide the fact because she’s a girl and has to get married. We refused to be bogged down by these and as we shared our story, we have had multiple cases of people benefitting from it.

Parting message

My message to people is that if you run from your problems, your problems will run behind you, but if you stop, they stop. If you run after your problems, they go away. So, stop running from your problems; instead, run after them.

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