I lost half my tongue and gained a new label: Cancer survivor

It started with a small, inconsequential looking ulcer on my tongue. It ended with having almost half my tongue cut out and other scars that I will live with forever. Physical. And mental.

To understand, let’s rewind a bit — to 11th August, 2021.

The last thing I remember before being wheeled into the operating theatre for tongue cancer surgery was grasping onto my mom’s hand so tightly that the nurses had to pry our fingers apart.

My mom, my safety zone… I could see the desperate anguish in her eyes but even in this moment, she kept a smile on to give me courage. I wanted to hold on to her hand forever. I wanted her to hold back time, keep me from going inside alone.

My younger brother — one of the most solid men I know — unable to travel across countries because of COVID, there with me on FaceTime looking helpless and terrified. All I wanted to do was hug him, tell him not worry.

But I couldn’t… because I didn’t have the words.

I woke up nine hours later, still without any words. Because they had cut out 43% of my tongue (it’s called a wide glossectomy — tongue cancer gives you a whole new vocabulary!), sliced open my neck from ear to ear and removed three tiers of lymph nodes.

All estimates before the surgery had promised that they would take away only 10-15% of my tongue… but 43%… that’s a whole new way of living.

It was my mother who broke it to me: That the tumor was much larger and much more aggressive than they initially thought (Stage 3, Grade 3). And that this was the only option to save my life.

But what kind of life would it turn out to be? Would it even be worth it? Would I ever speak again? Would I ever be able to eat real food again? Would the searing pain ever go away? Would I ever stop looking over my shoulder, scared that the cancer would come back? Would I ever be myself again — the good and the bad?

And what was worse was that I could not even communicate my fears and pain except through laboriously struggling with a pen and paper. Not made any easier by the drips and drains that ran out of my hands and shoulder and neck, which made even writing difficult.

All I could do for the next two weeks was lie on the hospital bed while my father, always the main man in my life, recounted stories of my childhood, read out the news and stroked whatever limb was free of tubes.

In unguarded moments, when he thought I wasn’t watching, he looked desolate, haunted and like he wanted to just tuck me back in his lap, safe from the demons.

My husband — my rock — the man who can’t stop talking even in his sleep, had run out of words. I have never seen him look so scared, even when facing down the most chilling courtroom battles.

I wished that I could rewind time. To before 31st July 2021, when I heard those words: “You have a tumor on your tongue. It’s malignant, it’s advanced and it’s aggressive. We need to operate immediately.” I still have goosebumps upon thinking back to that day, that moment.

Six months later, I may have had the courage to open up about it and write this post but my brain and fingers are frozen in that same fear that assaulted every part of my being that afternoon.

The world went blurry and in sharp focus all at once. It was like every nightmare come true and yet something that just refused to register in my conscious mind.

Because cancer was always something that happened to other people. To a friend of a friend. To someone you knew once or twice removed. It was not something that would ever hit home. Not even in our wildest dreams.

I have never smoked in my life, never had tobacco, never been much of a drinker. There is no history of oral cancer in my family. Yet, I got one of the worst cancers possible. Tongue cancer. Why? Nobody knows.

And it was a nightmare that seemed never to end. A month later, just as I had started getting back my speech, there was the radiation. 30 sittings of high dose radiation, which literally burnt my skin from the outside — we are talking third degree burns — and melted my entire mouth and throat from the inside.

The parts that were not burnt were so full of ulcers and wounds and everything hurt so much that I was prescribed Fentanyl patches 24×7 just to keep going. Fentanyl is a high strength opioid, roughly hundred times stronger than morphine — just one of the new things that you learn with tongue cancer.

All I craved in those days was a bite of toast with butter. Some potato crisps. A chocolate ice cream. To eat and taste something. To be able to speak without stumbling over my words. To sit up for more than half an hour at a time. To have the energy to get back to my life.

To just be me.

To look after my parents, who were strong externally but broken internally.

To assure my husband that I would be fine and wasn’t going to vanish from his existence.

To hug my brother very, very tightly.

To shower my sister-in-law with more love than I ever thought could fit into my heart. The sister-in-law who had put a pause on their wedding, which had been planned months earlier and was to be held just eight days after my surgery.

The sister-in-law, who along with my closest friends, would become my greatest source of strength during these days.

It’s a strength I continue to need day after day, even six months later.

My last scans were clear and the doctor says chances are high the tongue cancer will not come back.

But that doesn’t stop my family from getting terrified every time a new ache or pain rears its head. My white blood cell count is perilously low, which means I have to be super careful about catching any infection — and in still-COVID times, that means there are very few places I can go safely.

I have started being able to eat softer foods though all the spicy dishes that I loved so much (I was the person eating straight out habanero peppers as a snack!) are an absolute no-go because my tongue is so raw, it’s unbelievable. Sometimes, even water hurts.

My tongue was stitched together with tissue taken from my jaw to create what’s known as a “flap”. The flap is there to hold the rest of the tongue together but has no mobility or taste buds of its own.

During the tongue cancer surgery, seven teeth — including all my bottom molars — had to be pulled out to give the tongue space as it swelled up. I cannot get implants to replace them as radiation left the jawbone too brittle.

Added bonus: Between surgery and radiation, I have only about 10% salivary glands left. So, chewing is a task in itself.

I can talk but need to take a break every few sentences. In a blessing, much of my speech has come back and I will hold that as the most precious gift ever.

The pain remains. Not all of it but a lot of it. I can’t sleep at night because of the agony. My face is swollen on the left side and looks a little lopsided on bad days.

Will the pain go away? Will the swelling?

Maybe yes, in time.

Maybe I will just have to learn to live with it. Too many nerves have been cut, too much damage has been done for there to be any guarantees.

I am back at work, though my hours have become shorter because the energy doesn’t hold up. I am blessed to have had the support of people in my work community — the readers, the Instagram audience, the brands — have been there for me, even when I couldn’t be there for myself.

Thank you to all of you for standing staunch, not deserting me despite my absence and giving me a goal to work towards. A goal which was as healing as the surgeon’s hands and my family’s love.

Lying in the hospital during those dark days post my tongue cancer surgery, I had decided that all things beauty — which along with reading is my life’s biggest passion — was superfluous.

What could a face mask do for you when you were dying on the inside? Was there a point to lipsticks in the larger scheme of things? Perfumes and candles when I couldn’t even be bothered to have my mother brush out the knots from my hair? Conditioners when my hair was falling out from the radiation?

But then, two months back, a friend convinced me to put on a rose-based face mask to soothe my dry, itchy skin. And it was a revelation. It made me feel relaxed, soothed, calm… just happy. And it reminded me of why I love all things beauty so much — because these simple motions can make you feel good and not just look good.

Then I put on a swipe of red lipstick for a Zoom meeting. It was the only way I could think of to perk up my sallowness. And it seemed to light me up from within. Again reminding me that beauty can be empowering when you use it mindfully.

Today, I am back to being surrounded by my perfumes, my candles, my skincare serums and my face masks. And by my people. Life is not perfect — maybe it never will be, maybe it never can be for anyone of us. All of us have our demons, our challenges, our own journeys.

Today, six months later, the word “cancer” still doesn’t sound real to me. In my head, I have had a major surgery but tongue cancer? That’s still something my mind is wrapping itself around.

But I do know why it happened. To shift my perspective.

It made me re-evaluate every emotion, every choice, every relationship. What seemed like an end of the world crisis earlier just doesn’t affect me any longer.

It made me realise what mattered. Who mattered. My family. My closest friends. My former teacher from college, who chanted for me every day and held my hand virtually through it all.

My community. Take everything else away from me and I will be fine as long as I have my tribe.

These scars will always remain. So will, I guess, the fear.

But again, as the ones who matter remind me — these are battle scars.

I will not be regretting them. I will not be covering them up.

They remind me that life can be unexpected, scary and full of pain. But they also remind me that it is worth fighting for, worth living, worth cherishing. And that the smallest things can bring the biggest joys.

Today, I am happy to be alive.

Today, I make a contract with myself: To enjoy every single day of being alive. Because it’s a privilege, not a promise.

Nothing is guaranteed in life. It’s a journey and I intend to live mine more fully than ever before. So, here’s to new beginnings!