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Submitted by PatientsEngage on 27 July 2018
Image: Sanjay Jaiswal, with black hair and a moustache is an Oral Cancer survivor and stands in a red shirt against a yellow background

Early detection of mouth cancer helped Sanjay Jaiswal minimize postoperative challenges, discomfort and deformities. Here, he recounts his difficult journey and how he worked hard to get back his life.

I developed a small ulcer in the mouth when I was 42, sometime in August 2010. It was at the back of my tongue, actually between my tongue, gums and jaw bone. I ignored it initially thinking it to be some kind of a boil. But when it became bothersome I went to an ENT specialist. He gave me some medicines and said - if it heals, well and good, but if in 10 days it does not, I would recommend you visit a cancer specialist. Cancer!!! That sent a chill down my spine.

The next 10 days were a nightmare. All I could think of was the lesion in my mouth. There were days I would wake up in the middle of the night and start examining my tongue and jaws. Even during the day, whenever I went to the washroom I would open my mouth as wide as possible and peek into the rear. After a few days, the lump did shrink a bit, but it definitely did not heal.

Diagnosed with oral cancer

Finally, I took an appointment with an oncologist. The anxiety was eating me. After some basic preliminary examinations and tests, a biopsy and an MRI were done. The result takes about a week. As I live alone in Delhi, I called my parents in Kolkata. I gently broke the news to them that I was suspected with cancer. They rushed immediately to Delhi to be by my side. I was dreading the results. Unfortunately, my worst fear came true. I was diagnosed with early stage oral cancer.

The doctor advised me to go for surgery as soon as possible. A date was finalised and I was wheeled into the Operation Theatre.  Amongst the team of doctors, the main were an oncosurgeon and mouth reconstruction specialist. Reconstruction is done at the same time the tumor is removed. I was in a state of shock and could barely register what the doctors were telling me. Later, I got to know my surgery had taken nearly 7-8 hours. More than excision of the tumor, the reconstruction had taken time. There was reconstruction and regrafting of my mouth and jaw. A radial flap surgery was conducted to take pieces of my skin from the wrist which is relatively smooth to graft and patch up the right side of my mouth. I still have a cut mark on my cheek bone going down to my throat. And a flap of my skin near my wrist is still missing. I was in the hospital for 15 days and after that for another 15 days in the nearby patient dharamshala (hospice).

Radiation therapy

The oncologist had said that depending on my recovery, the future course of treatment would be decided. Most of the patients who had oral cancer were much older than me - in the 60s and 70s. They had been recommended chemotherapy. I was dreading chemo because I had read it can throw up a lot of difficulties. Finally, a month after surgery, the doctor examined me again and informed that chemo would not be necessary for me. He said I was young (42 years), strong, full-time professional and would be able bounce back on my own. He advised I undergo radiotherapy.

The radiation therapy treatment schedule was for 30 sessions which stretched over to about 6 weeks. By the end of it my face and throat had turned pitch black. The doctor tried to comfort me by saying that this was temporary and once the skin peels off, I would get my complexion back. But complexion was the last thing on my mind.

I had become very weak since my surgery. From 68 kg, I came down to 50 kg. My clothes would hang on me now. I felt like a bag of bones. In two months I had become so weak that I couldn’t manage on my own. I went to Kolkata to be with my parents.

Recommended: How to Handle the Side Effects of Radiotherapy

Liquid diet

I was on liquid diet for nearly six months. I was being fed juices and milk. The liquids were being poured directly into my throat with a special funnel like feeding device. The doctor advised complete rest at home. In December, I returned to Delhi for an MRI again, but the doctor recommended some more rest.

It was exactly after nine months that I was able to resume office in Delhi. I still remember the date. It was 2nd May. It is an important day, not only for me but for the entire world. It was in the early morning of 2nd May when Osama bin Laden, of militant Al-Qaeda, was shot dead. There was breaking news and buzz everywhere.

Since surgery, I was not able to have food that had spices. Spices to an extent were tolerable, but any chilli was totally out of bounds. This was the effect of radiotherapy. The doctor had told me that it will be quite a while, before you can have regular food. But you’ll have to forego mirchi altogether. Since I was single, it was quite cumbersome to find bland food with minimal masala and absolutely no mirchi whatsoever.

My younger brother is settled and working in Pune. When he saw me struggling alone in Delhi he said, “You are lucky to be working in a company that has a branch in Pune. You are also working for a domain expertise that has operations here too… why don’t you shift to Pune. You could stay at home with us, be comfortable and get the food as per your requirement.” I took up my brother’s offer gladly. My office was extremely supportive. They readily gave me a transfer to Pune. So I have been living in Pune now since 2015.

Learning to speak again

After the surgery of my mouth, my speech was severely impaired. I had to start learning to speak from scratch. I had to undergo speech therapy at the Hospital for about 15 days. The therapist said that they could only provide guidance and some support, but eventually I needed to practice my speech on my own. With all the changes in my mouth, tongue, cheek, jaws and throat, I had to learn anew how to articulate, speak and express myself. Initially, my speech was extremely subdued. I felt as if something was holding me back. But I kept practicing and pushing myself. I would speak loudly, read loudly. I would try master tongue twisters to help me exercise my mouth. But with the passage of time, my voice became louder and clearer. Now I have achieved almost 60-70% clarity. But obviously it is not what it used to be earlier.

The downside is that when I talk for long a kind of froth builds up on the right side of my mouth and I need to use my handkerchief to wipe it off, while my throat becomes dry and I need to gulp a sip or two of water frequently to be able to speak clearly.

Biggest challenge

The most challenging part was opening up to people. For the first few years I used to be on my own. I would interact very little with others because of the speech impairment and the inhibition of being a cancer survivor. Fortunately, because of early detection and excellent reconstruction surgery, there was no disfigurement on my face as such but yes some facial changes which provide tell-tale signs of surgery.

Right now I'm about more or less back to my years before the operation as far as acceptance and intermingling with society is concerned. The only thing that does stand out a bit is my speech impairment although it is remarkably better than what it used to be in the initial years after the operation in 2010.

 

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