“What made you think you have cancer?”
“Why are you here, then?”
“Because I am sent here.”
“The gynecologist of your hospital.”
And with that, I was made to rattle off my case history of six years, “A small tumor in the upper part of the left breast—the size of a split pea—now bigger—the size of a soaked chickpea. No pain—very slow growth. Consulted doctors in Mumbai and Chennai—including the resident gynecologist at your hospital.”
Women, whether literate or not, run straight to a gynecologist—“lady doctor,” as we call them here in India—whenever there’s anything problem with their breasts or uterus. I, too, did the same and ended up running around for six years.
The gynecologist repeated what my friends had already said to assure me, “With age women often develop a few glands. It’s nothing to worry about.” The assurance put me back on life’s track. I was busy again—with my job, writing, theatre, folk, and social work. The person to whom I’ll be eternally thankful is the nurse at the hospital’s gynecology department, “Madam, you should go to the oncology department straightaway. That’s where even our department’s doctor will eventually send you. If you go now, it’ll save you time.”
The oncologist, too, came up with a similar reassurance, “I think it’s a fibroid, which doesn’t matter. You can live with it your entire life. But still, just to be on the safer side, go for mammography, mammo-sonography, and biopsy, and come back with the reports.”
Ever ready for a new experience, I took it as a fun way of learning something new. At the mammography department, I was told, “Walk-in patients must wait for their turn.” Well, so be it. After all, with my tight schedule, I had not a single day free till Diwali, which was an entire month later. Today, luckily, I had no meeting or rehearsal, so why not just wait and get done with it? After all, the sooner, the better.
A sudden nervousness engulfed me as I realized that I was all by myself. I have always been on my own, doing everything by myself—alone. Taking someone along for any work of mine is a waste of that person’s time—or so I’ve always felt. I had no idea what a biopsy entails. The doctor had told me nothing but a brief “we’ll use a needle to check your breast.” But when the needle entered my breast and started moving and poking all around to check the tissues, and when samples were being cut from everywhere, I started blacking out. One glimpse of blood- soaked cotton in the trey was enough to make me go weak in the knees. Thankfully, I hadn’t driven down that day. But now, no auto-rickshaw was ready to stop to take me back home. When one finally did, the driver refused to go to “that crowded area” where my home was. I almost begged him, “Please, I’ve just come out of the hospital and feeling all giddy. Please take me home.” He took a moment to gauge me, reluctantly agreed, took me home—and then waited till I entered the elevator. Here was one of those tiny moments of human compassion that touch the heart in a big way.
Immediately after the check-up, I had to go to Bhopal on an official trip. Engulfed in work, I forgot everything. It was only four days later that I remembered about it and called up my husband, Ajay, to ask about the report. He barely spoke, “The report is positive. We’ll decide what to do when you are back.” This was the night of October 18, 2013—a night of hell—that tormented me as I almost collapsed with the pressure of my official work and e report’s positive result.
I have had many medical problems, but the reports have always been negative. “Finally—A positive!” I tried to smile at my joke. Then my heart contradicted, “No, something has to be wrong there, in the report.”
But the report was impeccable, our family doctor confirmed it. And so, “Welcome to the world of cancer,” I told myself!
The report was a surprise even for the oncologist, “Well, your hunch, at times, may be wrong.” With the certainty of cancer established, now was the time to face the bare truth. In very few and concise words the doctor told me all about the condition, its treatment, and the pre-treatment tests.
Cancer cells spread through the body at a very quick pace, so the sooner they are attacked, the better. But we had to wait a bit as I had some urgent official tasks to complete—going to Delhi for a day and then attending a crucial meeting at the office. The doctor wanted to operate on me on October 30. But that, too, was impossible. I had missed Ajay’s birthday for three consecutive years as I was posted in Chennai and he was working in Mumbai. This time, I couldn’t meet anything Finally, we decided on November 1.
Till now, my condition was known only to a few of my office colleagues. I knew how upset my relatives will get. Years ago, my mother had lost her brother to cancer, and then two years ago the disease had struck a dual blow—my elder brother and the wife of my husband’s eldest brother, both had succumbed to the killer disease. The scars were still fresh for both sides of the family, dealing with family members and answering their worried queries was going to be a tough task for us. We decided not to reveal the news to anyone till a treatment protocol was finalized.
And we were so right! Just as we had feared, my younger Mithani (wife of my husband’s second elder brother) and my sisters were inconsolable. I was the one laughing, while they all cried bitterly. I had to tell them, “You are the ones who should give me strength! If you lose courage, whom can I turn to?”
I decided not to feel sorry for myself. If I cried, it would be only because of the physical pain caused by the disease and the treatment. I have this habit of reminding myself of those who are worse off, whenever I lose heart. I followed the same formula and reminded myself of the breast cancer patients who have more dangerous cancer but live their lives and undergo treatment. It was the first time that I thought about myself—I must stay strong, for my own sake and the sake of my husband and daughters.
People close to me have heard me mocking myself often, “My breasts, roller pressed!” The shape and size of my breasts never mattered to me. Now I realized that these things don’t even matter to cancer cells. I have always believed that viewing breasts as symbols of feminity and beauty is incorrect. If your life partner loves you only because of your breasts, then this “love” needs to be reevaluated. I am a lucky woman—my husband’s love for me was never affected by my body or face. I must also add here that breast cancer treatment doesn’t always mean losing the entire breast. Depending on the stage of the condition, your doctor may remove only the tumor, like me. In my case, only the lump was removed, not my breast.
And now that we are talking about cancer, let’s discuss it a bit more. People usually shy away from such discussions, but this only resultsa ia n lack of awareness. I feel that we must talk about this disease so that others can learn from our experiences and prepare themselves mentally to fight it. Remember, what you need is a strong heart and resolute head to take up this fight. You’ll meet many who will be genuinely sorry for you, but you must let them know that you need some solid support from them, not any tears of sympathy.
Cancer is a scary disease. It breaks you—physically, mentally, and financially. If the patient gets cured, then all is well; otherwise, one faces an emptiness that follows one till the end. A greater truth is that no one gives it a thought unless it hits them personally. This leads to many misgivings. Even though people are familiar with the word cancer, they know more about viral fever than about the dreaded disease. And so, the moment you are diagnosed with it, a scary nervousness strikes not just you but all those around you. We, too, were extremely nervous. Somewhere in my heart, I wanted all of us–I, Ajay, and our two daughters—to get into a huddle and cry our hearts out together. But we all stayed strong at our levels.
My cancer was playing hide-and-seek even with the doctor. The doctor believed my case to be “pretty fair,” and so decided not to insert a chemo port, “Once you get the sample report, you may not even need chemo. Just radiation, and you’ll be off.” Can there be a better prognosis for a patient?
But post operation, I even had to stay in an ICU owing to various complications. Things improved gradually, and in a few days I was doing quite OK but for a urine infection. Ravi Shekhar, a friend of mine left a music box in my room, which kept me company, humming lightly from morning till night. The nurse taught me some exercises. Ten days later I was home—as a full-time patient. Ajay and the girls got busy managing my room, food, and medicines. I was strictly told not to do any work and especially to avoid the kitchen as I needed to stay away from direct heat. I was eating and resting more than I had ever done in my entire life. Seems like even nature doesn’t bear it when you push yourself beyond a limit; it makes sure that you are compensated. My cancer was perhaps nature’s way to heal my tired body.
The sample report arrived—stage 1, grade 3. The doctor explained, “When there’s a theft, the police are called, but when there’s a terror attack, commandoes are needed. Grade 3 cancer is a terrorist, which has entered your breast and armpit nodes. So chemo is unavoidable.”
The chemo specialist gave me a probable date—November 23, 2013—and some instructions, “Chemo must start within three-four weeks after surgery. Since chemo kills healthy cells of your body along with cancer cells, you will experience side effects like lack of appetite, weakness, dizziness, and first of all, hair fall.
The third week of chemo had just begun. As I was taking a bath, a handful of hair came off my scalp. In preparation for chemo, I had already got a pixy haircut: better to lose small-length hair than my long and flowing mane. But I still nursed an emotional attachment to my hair, and so, even though I knew I’ll lose hair, I couldn’t stop crying bitterly. I had promised myself that I won’t cry, but that promise crashed in a moment. Ajay and Koshy, my younger daughter, came rushing down and consoled me when they learned the reason. Koshy, who is a hairdresser, quickly removed the rest of my hair and gave my scalp an even look. But I couldn’t face the mirror and quickly covered my head. In the night, I told Toshi, my elder daughter, “My face looks so scary.” But she hugged me, “Not at all! You still look as lovely as ever.”
It took me a couple of days to come to terms with it. And then I remembered how I had often thought of doing Gandhi’s role during my days of performing the play Mr. Jinnah but wasn’t able to gather enough courage to go bald. Now I was in love with my bald pate. I covered it no more, neither at home nor outside. This boosted my self-confidence. People (most of whom were still unaware of my condition) only had nice comments: “this ‘cut’ suits you well,” “you look just like a monk,” and “you look like Shabana Azmi” (to which I’d retort, “In fact, she looks like me”).
Since no chemo port was inserted during the surgery, I was given intravenous chemo—every 21 days. But by the time of the third chemo my veins were on fire. I was in excruciating pain. The doctor told me, “Your veins are highly sensitive. Usually, all this happens after six months, but you took not even two months! You still need to undergo 13 chemo treatments, so we should insert a chemo port.” A margin test was also required. For me, it all meant just one thing: I have to go back to the operation table! Oh my God! Again!
Health and education are two areas where you must show complete subjugation—to the doctors and the schools. So a chemo port was inserted into my body and a margin test was performed to find out if cancer cells were still lurking inside. The report reached the doctor and, finally, there was one good news: I was out of danger! But all wasn’t over yet. I had to follow a strict schedule—chemo, radiation, diet, and rest.
And then, struck by an infection, I was back in the hospital for 10 days. This called for a whole lot of new tests, and I wondered how many of them were necessary. The hospital bill kept mounting, and so did my angst. Once again the thought haunted me: how much of a slave one becomes when it comes to health or education.
After 16 chemo sessions, it was time for radiation. Another round started—ting the new doctor, going through the summary, history, marking, and mapping. And then I was told I’ll need 31 sessions, Mon-Fri. “Oh, back to the familiar, office-like routine!” I thought.
While chemo had its specific reactions, radiation had a completely different set of effects. No water, soap, cream, or even scratching was allowed in the affected area. It wasn’t long before the radiated area became badly burnt.
But the biggest trouble I faced was not a physical one. I was used to being busy all day—for the whole of my life—and now I couldn’t figure out how to while away my time. I would spend two weeks fighting against the effects of chemo, but there was one week when I was in somewhat “good condition.” I divided my time between three activities: reading, writing, and making videos. Instagram helped me with the third one. I’d create tiny videos—just 15-second long—and upload them on YouTube. And I read a lot—books, magazines, Hindi, English, and Maithili.
It was during this time in March 2014, that I started the AITOKO Room Theatre program. It is based on the concept to provide a platform to all creative enthusiasts along with a guide to them from the veterans, and we cover literature, cinema, TV, and theatre. In our tiny Mumbai home, which I used to tell that in Mumbai houses, there are no halls, there are holes, and where it is difficult to fit even 20-25 people, almost 50-60 people participate in the program despite all the inconvenience. I would undergo chemo on Saturdays and then due to chemo effects, couldn’t sleep the entire night. But on Sundays, I was up—enthusiastically organizing the creative evenings. After a Friday, I could sleep only late on Sunday night, after the departure of every participant.
Now, as I underwent all this, I realized how little people know about cancer and how important it is to create awareness about it. Everyone has tools that they can use. I’m a writer and a theatre artist, so I started by writing the poem: ‘Samrath-CAN’. My experiences with cancer, chemo, and radiation, and my feelings as I underwent all this, found expression in form of poems. It is published and available with me along with another poetry collection ‘Kyunki Zid Hai- I Must’. Both collections are bilingual- Hindi and English in a single edition. Apart from my regular stories, these poems too were being published in magazines. I also began to regularize all of my blogs and used Facebook as a tool to spread the word about them. I have written a play ‘Popcorn Breasts’ and had a couple of shows in Mumbai, Delhi, etc.
These are the latter ones. So far, we haven’t informed anyone about my cancer except my near and dear ones. When finally, my article on cancer got published, in the magazine ‘Bindiya’, edited by the noted author and journalist Geetashree in April 2014, it rocked my Facebook world. Instead of giving me strength, my well-wishers were “feeling sorry”—as if I were dead. They complained, why I haven’t informed them? They were curious to see how cancer has deformed my face, I started going to jails for performing for the jail inmates, people approached me by saying- “I want to go to jail as I have never visited it. I want to see the prisoners, how do they look like?’ I used to say, ‘Please commit some crime and you would be very much entitled to visit the place. ….And mind it please, inmates are human beings like you and me. They are not a creature from Mars and Moon.’ And so they visited me. I, too, welcomed them and received their phone calls with my bald head, barren eyelids, and brows, disfigured face, black nails, and body (but much-improved wisdom).
The most efficient weapon against any adversity is positivity. Today I am out of my cancer schedule of chemo and radiation and in the follow-up stage, which will go up to the year 2024, as per the doctor. In the meantime, I have started many things. Very first, I joined my office after ten month break in late August 2014. Then started visiting several places for motivational talks, conducting theatre workshops, performing folk singing and theatre, starting an acting career in the films, becoming POSH Enabler, helping cancer patients from the proceeds, I get from my poetry collections, counseling people, started a Facebook page ‘Celebrating Cancer’ and sharing mine as well as others experiences and many more. Cancer has given me an insight that ‘only and only this moment is mine, so I must use it and enjoy it.’ I must appreciate that it is CANCER, who has given me a pandora of new world experiences. How I would have experienced the ups and downs of the chemo, the big giant machine of radiation, where no one is allowed to enter, becoming bald and carrying myself in bald hair and an act of courage that now I can get bald any moment?
It takes days to fight with yourself and to prepare yourself, but your mental strength and family support are panaceas for all adversity, leave alone cancer. This gives you many openings: to ponder, meditate, rest, eat, and gather everyone’s sympathy (haha!). Don’t even think that you are getting disfigured; rather, think that you’ve got one more chance to live your life and this is 100% yours. Live it! Live with your entire energy and complete confidence; let cancer know that you have all that it takes to fight it. So come, let’s celebrate cancer—with the following thought:
It matters not
The breast is flat or curved,
The face is ravishing or ruined
The head is hairy or bald.
Nothing’s more beautiful, youthful, and lively
Than life itself.
Come, celebrate this youth
Celebrate this life!
Translated from Hindi by Shruti Nagar