Avenindra Mann, who was addicted to pan masala or smokeless tobacco for nearly 20 years, was devastated when he developed oral cancer and his left jaw had to be removed. Today, as survivor, he is committed to spread awareness and save lives from oral cancer.
I was diagnosed with mouth cancer at age 44 in 2012.
Early signs of mouth cancer
My early symptom was routine discomfort in the mouth. There was a burning sensation and I had problems opening my mouth wide. On closer self-examination I saw some thickened, white patches on my gums and inside my cheeks. It seemed like fungal infection. I took a dose of iron and multivitamins, and thought it would go away, but I got no relief. The soreness in the mouth only increased. I began having problems even eating and swallowing.
On checking with a doctor, I was told I had Oral submucous fibrosis (OSF). If OSF is moderate, it can be controlled with medicines, but mine looked quite advanced. It is not a good sign, I was informed. It could be precancerous or it could even be a malignant tumour.
Diagnosis of cancer
I was cold and numb with fright when I went for a check-up. There was a battery of tests recommended. First the inside of the mouth and back of the throat was examined, followed by blood tests and X-rays, and fine needle aspiration biopsy of the mouth. Sadly, the results came positive. I had mouth cancer. More specifically, I had buccal mucosa cancer or malignancy of the membrane lining of the inner surface of the cheeks. I had to undergo free flap surgery and radiotherapy.
Life changes after recurrence
Unfortunately, in 2018, six years after I was first diagnosed with oral cancer, my cancer returned, this time more aggressively. I had to go through another round of surgery, followed by chemotherapy and radiotherapy.
It was the most excruciating and painful phase of my life. This time I saw my existence crumbling before me.
Disfigurement - My left jaw had been sawed away extensively disfiguring my face badly. I couldn’t see myself in the mirror initially, there would only be tears. My face did not look normal.
Diet - I could no longer enjoy the pleasures of chewing and chomping solid food any more. I have been surviving on liquid diet since then. In the last three odd years I have lost nearly 25 kg of weight.
Soft Food Options for Oral Cancer
Voice - My voice was not mine anymore. It has become hoarse and unclear. My speech was difficult to recognise and understand. I could not speak loudly anymore. There was a time when I used to love singing and chanting old songs, but after surgery, I could not even hum or whistle a tune. Singing had been my passion and it relaxed me in many ways. Now it was all gone.
Since 2018, I have also retired from my work as real estate developer and investor in Jaipur.
Recovery
After surgery, when my face was totally disfigured I could sense people, even near and dear ones, slowly distancing themselves from me. I felt myself drowning in frustration and bitterness. But my family has been a great support. My wife particularly has stood like a strong anchor next to me. I too have been reconciling to the disease and motivating myself about life.
I have become more positive and optimistic now. I tend to look at the silver linings, instead of the dark clouds. I have learnt to build a happy environment around me where there is joy and satisfaction. If I am not able to sing, I have picked up dancing now. If I am not able to socialize much, I have built a commune with nature now. Where my life was one big rush once upon a time, I cherish every single moment now. I have also started wearing a silicon pad to give shape to my face as my left jaw was deformed.
My biggest learning
In recent days I draw strength from a song sung by Manna Dey in 1977 for film Anurodh - Tum Besahara Ho Toh Kisi Kaa Sahara Bano (Even in times of helplessness, you can be of help to somebody). It vocalizes my sentiments and shows me direction. I have joined support groups in Jaipur where I live. I am part of various charity and social groups. I am trying to help and motivate cancer patients. With the help of some NGOs, I am also trying to develop and android app for cancer patients, having a wide information about cancer.
Now when I look back on my life, there is nothing I regret more than gutkha addiction. According to my oncologist, I had developed oral cancer due to chewing pan masala. I got introduced to pan masala at age 25 by some friends. I started with one pouch daily and at the peak of the habit I would consume 10 to 15 pouches daily. Pan masala has emerged as a major cause of oral cancer in India. The continuous chewing of paan and swallowing of gutkha triggers fibrosis in the mouth.
Tips to prevent oral cancer
- Stay away from tobacco of any kind. This also includes smokeless tobacco, such as paan and gutkha.
- Practice good oral hygiene
- Do not ignore any change inside your mouth, especially if there is pain or discomfort
- Check immediately with your doctor if your tongue or cheeks are getting frequently, not accidentally, getting bitten or gnawed by your teeth. This could indicate some disorder.
Read here: Best ways to quit smoking
