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A post by an author who met the cancer demon face-to-face. The words here explain her struggle, strength and hope. A story of her fighting cancer.
It was February 11th, the day I go to know I had cancer. I was the first to read the report. Two words glared at me from all the technical jargon – ‘tumour’ and ‘carcinoma’.
I ran up the hospital stairs, clutching the report and asking my parents to take the lift. I wanted to catch hold of my doctor before he left for his evening rounds. My parents finally caught up with me and I fingered the words ‘squamous cell carcinoma’ for my dad’s benefit. The doctor summoned us into his office and said in a matter-of-fact manner, that it was cancer and that I would need radiation, maybe chemotherapy too, and after that possibly a surgery, where my neck’s lymph nodes would be removed. My speech, which was already affected from the tongue excision, would be affected more and my left shoulder would weaken. It was all too much information and mom, a depression patient for over 20 years, began to grow restless and cry. The doctor called up the radiology department and forwarded us there. Mom refused to come. She stayed on the ground floor, beginning to make the first of many calls my parents would make that day.
The radiology doctors in the basement explained the radiation and concurrent chemo processes in a practiced grim manner and sent us off with more information, asking us to come back after 2 weeks. “We will take care of you”, were the last words I heard before leaving the room.
I called V and told him everything. I also asked him to reconsider marrying me. When he asked me to shut up, I told him that it was going to be a long drawn-out and expensive treatment and that I would prefer nothing more than a court marriage. It’s funny to recall this in hindsight. My life out of balance and we were still discussing and planning our wedding.
Mom, dad, and I proceeded to the car. Dad stopped on the way to buy me some ice-cream for I had to be on a liquid/semi-solid diet for a few weeks. Meanwhile, didi called mom which led to more howling from her. I wanted mom to calm down. I could not take the hysteria. We reached home where my parents continued calling select relatives and doctor friends. It was past 10 when I went up to my room, finally alone, away from the emotional conversations and crying. And then my dam broke. I remember looking at myself in the mirror and wondering how death at 27 years of age would be like.
I woke up the next morning, crying. I called V, hung up, and cried some more. I called him again on skype and we cried together. Once the crying was done and over with, I got up, bathed and left for another hospital to meet dad’s radiologist friend. His suggested a course of treatment in which a surgery is performed first, followed by radiation; this was quite the opposite of my previous doctor’s suggestion. But latest treatment idea and reasoning made more sense to us. I returned home late afternoon to see didi and her kids waiting for me. I must have smiled for the first time in two days. And then a miracle happened. My jiju (brother-in-law) whom I had not spoken to in four years over personal differences, asked after my well-being. It was momentous and I was thankful for him to have forgotten our differences and stood in solidarity with me.
In the coming days, I started maintaining a journal. I was not regular, but it helped to pen down my thoughts and evaluate the course my feelings and emotions took. I also started informing close friends and colleagues in office about my cancer and got immense support, kindness, and encouragement in return. Once in a while, I also got extreme reactions of immense shock and hysteria, and I realized that I should be careful about whom I want to share the information with as I was getting hurt in the process. I started valuing my privacy even more rigorously and was assertive in telling my well-wishers when I didn’t want to talk or meet. At the cost of sounding rude to them, I realized it was my right to make such decisions, though I was aware that I might be putting people in an extremely uncomfortable position on divulging my illness.
It was time to take a third opinion and this time it was a hotel-like hospital in Gurgaon. But we had heard good things about an oncologist there and so we went ahead. The doctor, though extremely knowledgeable and experienced, spelled the death knell for me. He said that my cancer looked extremely aggressive and that chances of recurrence were high, post which, I had maybe a few years to live. In short, he wrote me off. I broke down in the middle of the consultation, marking it as the first time I had cried before my family since the news of my cancer. I was in a trance when I left the hospital. It had been one of the most terrifying experiences of my life and I was sure that I was going to die.
I was going to die. I was 27. I had not lived enough, not worked enough, not achieved enough.
I was going to die. I was 27. I had not lived enough, not worked enough, not achieved enough. I was a social activist, fighting for human rights. I had put my life in danger in the course of my work and could have died working in the red belt of Odisha or conflict-ridden Kashmir. But it was cancer, which was threatening to claim my life. Why did dying of cancer feel worse? Because it was slow. Because I was aware of its presence inside me. Because I was scared of what lay ahead. Because I did not want to die of cancer of all the things. It did not give me the adrenaline rush of a car ride with separatists in Anantnag, Kashmir or the torrential rains of a dark night in Sundargarh, Odisha. Instead it mocked at me and brought home the realization that the fierceness I had lived all my life with, meant nothing before it and its coming ravages on my body.
On hearing what had transpired, V booked his tickets to India. I slept that night with didi’s words of hope and in the anticipation of V’s arrival.
I had gotten in touch with two batchmates from TISS who were cancer survivors. Both were a huge source of inspiration and strength. They also made me realize that after the initial shock and emotional upheaval, one had to focus on getting the right treatment. And that had to start from finalizing the place of treatment. I had my hopes pinned on Rajiv Gandhi Cancer Institute and Research Center’s (RGCIRC) Dr. Dewan and I visited him during OPD hours on a Friday with much hope. After an initial assessment by junior doctors, I met Dr. Dewan who went through all my reports and confirmed what the previous two doctors had told me. Firstly, my first surgery was inadequate due to insufficient excision margins, which required a further excision of my tongue. Secondly, I already had a palpable node in the left side of my neck and hence a neck dissection for lymph node removal was pertinent. Based on the histology report then, further course of treatment would be decided. I told Dr. Dewan that a previous doctor had written me off. His reply was simple. He said, “But we are not writing you off.”
I realized that the future of my disease, my cancer, depended not just on the biology of it all, but also on the doctor and the hospital, and most importantly on me. I could either mope around and pity myself or buck up and get on with it. I hoped to mentally and physically coach myself for the latter. Dr. Dewan’s balance of pragmatism and kindness gave me a renewed strength. Surprisingly, I took very nicely to the hospital itself. It was plain and stark and had none of the frills of the corporate hospitals I had visited earlier. Every staff person was always helpful and kind. And most importantly, it was a specialized cancer institute and being surrounded by cancer patients gave me fresh perspective on my physical sufferings and inner turmoil. This continued to help me cope with the disease after my second surgery as well, but more on that later.
I realized that the future of my disease, my cancer, depended not just on the biology of it all, but also on the doctor and the hospital, and most importantly on me.
The arrival of V brought back laughter in my life. By then, I had decided I would take my treatment at RGCIRC, but with V coming, we had an additional brain putting forth new questions and giving constructive opinions. For me however, it was all about spending time (was this the last?) with my best friend. The last few months had seen us go through immense ups and downs. The long distance aside, we had fought, cried, made up, fought again and so on. Our arguments had centered around fundamental questions of balancing personal and family opinions and relationships and building an uncertain future together. But all of that vanished the moment I got out of the car and hugged him at the airport. The next week felt like an eternity. We went on walks, visited a temple and gurudwara (where I, being ambivalent about religion, faced my inner conflicts about faith and beliefs), went for the Oscar winning Birdman (where we debated capitalism and conspicuous consumption, while enjoying the first time experience of sitting in the Gold Class of the multiplex), watched an incessant number of Ellen Degeneres and Conan O’Brein videos (V had a video in mind for every situation), and generally loafed around. While mom and didi worked hard to put in place a dietary routine for me to build stamina, V and dad debated over the need of a PET-MRI, subsequent test results, and surgery dates. Meanwhile, I began reading Yuvraj Singh’s The Test of my Life, about his fight with cancer, and looked up experiences of cancer survivors online, including those of Manisha Koirala and Lisa Ray.
If the first surgery was like a minor blip in my life, the second one sent my life for a toss. Dr. Dewan in his inimitable style asked me if I was ready for the surgery. I was about to say a reluctant “Yes”, when he asked me to get admitted that day itself. I got a room at the fag end of the day and while my name appeared at No. 13 on the patient list for next day’s surgeries under Dr. Dewan, I was the first to be operated upon the next morning. I cannot see much without my contact lenses or glasses and I remember a friendly- sounding doctor injecting me with anesthesia and then, nothing.
I woke up in fits and starts in the ICU and saw mom, V, and dad in turns. I spent the night, waking up on an hourly basis, and summoning the nurse to tell me the time. I wanted it to be morning. I wanted to see my family. With n number of pipes and tubes coming out from everywhere, I felt suffocated and utterly helpless. Finally, dad came in to see me, followed by V and mom. Getting the breathing tube removed was perhaps one of the most horrible experiences so far and left me numb. But I regained my spirits somewhat when I was shifted out of the ICU to my personal room. For the next four days, V stayed with me and took care of me in the best possible way anyone could. I started equating every new day with the removal of one more tube from my body and by the third day, I had begun to take strolls outside my room. Evenings saw mom, dad, didi and jiju visiting and cheering me up. But the medicines injected intravenously extracted the worst cries from me, prompting my sister to ask how I had gotten inked thrice when I couldn’t bear this much pain.
Seeing my good progress, I was discharged soon and went to recover at my sister’s place. The week following the surgery was one of the worst of my lives and I never ever want to go under the knife again. Looking back, I feel that I went through hell and back, and it was only after the feeding tube was removed on the eighth day, that I felt close to normal again. After two weeks of being on a liquid diet (difficult for a foodie like me), today I have started eating solid food and am on my way to recovery. My left shoulder is weak, my smile lopsided, and my speech slurred. I also have scars on my neck from the surgery. I like to think of them as my ‘survivor scars’ reminding me of this experience all my life. My histology reports have come, and it show that the cancer is at an advanced stage and that I would need both radio and chemo therapy. But I am hanging in and now preparing myself for the upcoming side effects. I spend my day doing light exercises, eating well, reading in the garden under the sun, watching Taarak Mehta ka Ulta Chashma re-runs, and day dreaming of going back to work, traveling to all the places I’ve wanted to, and doing every possible thing after my treatment.
I don’t think I am scared of death anymore. Neither do I waste time in pondering over “why me?”
Everyone tells me to be strong. Dr. Dewan and the numerous books I read tell me that science and technology have advanced enough to make cancer a curable disease. But at times I feel that this is just the beginning of a long, ferocious storm that would either haunt me forever or sweep me with it for good. I don’t think I am scared of death anymore. Neither do I waste time in pondering over “why me?” People die every day. Of disease, murder, accident, rape, natural disasters, starvation, suicide. So, how could I or why should I think that it could not happen to me? What I am scared of is the pain and of life-long suffering. Of not growing old and sitting on a porch somewhere thinking that I led a full life. But I try veering myself away from morbid thoughts and reminding myself that I am a fighter. I am good at adapting. I have seen enough and gone through enough to believe that I can face this. I will deal with it one day at a time. Hopefully with a smile.
Dad has been a rock so far. Mom will come around to accepting things sooner or later. Didi is more of a friend and my idol. And V, my strength. My only regret is of seeing people close to me in pain and being forced to put their lives on hold for me. But, I now look forward to what happens next.
To be continued.
Image of a patients hand via Shutterstock
Social Worker. Feminist. Romantic. Foodie.
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