On 29 July 2016, the journalist Sumegha Gulati died at the age of 26, after suffering for four years from Hodgkin’s lymphoma—a type of blood cancer. Gulati did not stop working, and produced several pieces of journalism during her illness, two of which were published by The Caravan. In her last three months, she worked on a story for this magazine on cancer treatment in India, based on her own time as a patient. She could not finish the project, but managed to record a part of her experience. This essay is an edited version of that record, which Gulati’s family recovered from her computer after her death. The drawings accompanying the text were made by Gulati during her days in the hospital.
ON A FEBRUARY MORNING in 2012, three days before a close family friend’s wedding, my face swelled up like a balloon while my body stayed stick-thin. But I wasn’t worried as much about the wedding as about the week after that. I was working with the Indian Express as a reporter in Delhi, and was supposed to leave, along with other journalists, on an official trip to Jharkhand that had been organised by the Central Reserve Police Force.
“Would I still be able to make the trip?” I asked my doctor.
“Forget Jharkhand right now,” he said. “Go home, pack a few clothes and get admitted right away.”
That’s what I did. The same day, at the All India Institute of Medical Sciences, a battery of tests followed. A little after dinner, inside a private ward at AIIMS, while I was joking around with Ma and Chachu, a resident doctor walked in.
“There is some water filling up fast around her heart,” he said. “We need to take her in for a procedure right now to drain it. It’s urgent.” He handed my mother a consent form, explaining that the procedure could be risky since it was performed close to the heart and could result in “any eventuality.”
Ma, Chachu and I stared blankly at each other. “Can I speak to my husband first?” Ma finally asked
“There’s no time. It has to be done right away,” said the doctor.
It was a little past 10 pm.
I still remember the night vividly. As I was being taken out of the ward on a stretcher, I caught a glimpse of the sky through the window. Late February nights in Delhi have a peculiar fragrance—the onset of spring, maybe? In those five minutes, while I was being wheeled towards the cardio centre of the hospital, all I could think was, “Will I see such a night again?”
Thankfully, I made it through the procedure, albeit with a lot of pain.
I had turned 22 two weeks earlier. My best friend since childhood, Monika, had a ritual. She knew I loved writing. So each year on my birthday, she gifted me a new handmade diary. These are undoubtedly some of my most treasured possessions. Little did I know that that year, in the beautiful purple-and-gold diary, I would begin one of the most unusual chapters of my life.
IN JULY 2010, fresh out of Delhi University, I packed my bags and left for Chennai to pursue post-graduate studies at the Asian College of Journalism. Having always lived at home, I saw hostel life as ultimate freedom.
Over the course of that year, I noticed that I was rapidly losing weight. I weighed around 52 kilograms when I had joined college. By December, I had dropped down to about 45 kilograms. Like most other students in the hostel, I had irregular sleep and food habits. There would often be long gaps between meals, and students across residential educational institutions in India rightly complain of poor-quality mess food. So there was a good explanation for the weight loss.
In March 2011, during the final term, the class produced a weekly newspaper as part of our course. We were still brainstorming story ideas when, on 11 March, the Fukushima Daiichi nuclear disaster struck Japan. Over fears of a similar tragedy, widespread protests broke out in southern Tamil Nadu against the then proposed Kudankulam Nuclear Power Plant.
I wanted to travel to the town of Kudankulam, around 650 kilometres from Chennai, to cover the protests. But a professor suggested a topic closer to home—the Kalpakkam Nuclear Power Plant, which was just two hours from the city.
The professor put me in touch with Dr V Pugazhenthi—a gold-medallist from Madurai Medical College. Dr Pugazhenthi, a native of the town of Kalpakkam, had studied the role of radiation in the constantly increasing cancer cases in the village, ever since the first recorded cancer death there, in 2003: a 24-year-old temporary worker at the plant had died of colon cancer—unusual for patients of such a young age.
Two days later, on a pleasant spring morning, wearing my favourite blue kurta, I boarded a bus to Kalpakkam from a stop near my college. Kalpakkam falls on the East Coast Road, which connects Chennai to Puducherry—considered one of the most picturesque highways in India, with the beautiful Bay of Bengal on one side and lush greenery on the other.
I reached Kalpakkam around noon and was received at the bus stop by a volunteer working with Dr Pugazhenthi. For the next few hours, we visited parts of the village closest to the nuclear plant. I was shocked to learn that there was hardly a house in the area that did not have at least one cancer patient. Many households had multiple cases of cancer. The fishermen’s locality, where most people consume meals consisting of the daily catch from the sea, was also affected. There were other diseases too: thyroid disorders, tuberculosis, infertility, mental retardation.
Later, at his house in a part of the village far away from the nuclear plant, Dr Pugazhenthi explained to me over lunch how a survey he had conducted in 2003 revealed that the death rate due to multiple myeloma—a cancer of certain white blood cells—had increased greatly among residents in the vicinity of the nuclear plant. Multiple myeloma had been linked with nuclear radiation by a number of studies.
This was my story. Armed with facts, figures and loads of personal accounts of patients and their families, I returned to college that evening—hungry, tired, but extremely satisfied. If I remember correctly, the story made it to the front page of that edition.
Roughly a year later, in January 2012, the investigative journalist Gangadhar Patil wrote a chilling exposé for the newspaper DNA. Patil had got hold of a copy of a study funded by the Department of Atomic Energy, which was never made public. For years, the government body had denied the existence of this report, which revealed that the rate of cancer cases in villages close to the Kalpakkam nuclear plant was seven times higher than in distant villages—210 per 100,000 people compared to 30 per 100,000 people. The study had covered 22 proximate villages (within an eight-kilometre radius), and three distant villages (50 kilometres from the reactor site).
The report also disclosed that as many as 244 employees at the Kalpakkam nuclear plant and their dependents were detected to have various types of cancers between 1999 and 2009. Multiple myeloma, which formed the crux of Patil’s story, is only one type of blood cancer. The other two are leukemia and lymphoma. I was diagnosed with lymphoma a couple of months after the DNA article came out.
FOR NEARLY FOUR WEEKS after that night in AIIMS, when the water around my heart was drained out, doctors suspected I had tuberculosis. I was put on anti-tubercular treatment. But none of the subsequent tests confirmed TB.
On the morning of 25 March 2012, as I was chatting with a friend of my mother’s who had come to see me, Ma went out to get water from the cooler.
Moments later, my consultant, Dr Naveet Wig, walked in with another doctor in tow. Ma came in behind them, looking absolutely pale. He requested that “the visitor” step out.
“Sumegha, your biopsy reports are out,” said Dr Wig.
“Okay,” I said.
“So, you don’t have TB.”
“Okay. So then?”
“It’s a type of cancer.”
I didn’t say anything. A faint smile broke out, perhaps in an attempt to hide the shock. I looked straight into his eyes. Dr Wig revealed no emotion. The other doctor kept his eyes downcast.
“Okay,” I said.
I have a peculiar habit when I am anxious—I nod a lot, and keep alternating between interlocking my fingers and clasping my fists.
“Okay, alright, okay, okay.”
I guess my smile must have faded eventually, but I remember being calm; in fact, I was completely blank.
After a pause that could have lasted a few seconds or a few minutes—I now cannot say—I asked him, “So, now what, sir? Ab chemo?”
“Chemotherapy, yes. Maybe radiation,” he said. “The oncology doctors will meet you and explain. They will decide the treatment.”
“Alright. Alright, sir. Theek hai,” I said, nodding the entire time.
“Okay. So you rest now.”
Just before he left the room, Dr Wig remarked, “Keep up the mental state.”
CHEMOTHERAPY BEGAN two days later. I was administered six rounds in all—each divided into two sessions, a fortnight apart.
Throughout the treatment, I kept writing in my diaries and on social media.
I think the chemo period had three distinct aspects to it.
One was the physical struggle. As chemotherapy progressed, my aches constantly got worse. In one diary entry, I wrote, “Sometimes, the pain is so immense, I think snakes are biting me all over.”
Extreme nausea and vomiting were routine. Mucositis—one of the most common side effects of chemo—caused me severe throat aches, mouth sores and ulcers. Swallowing water became a task. For days on end, I wouldn’t be able to eat. I survived on fruits, juices and coconut water. The toxic chemotherapy drugs made me weaker.
My bowel movements went for a toss. If for three days it would be extreme loose motions, to the point that I felt completely drained, then suddenly, the next few days would entail such constipation and intestinal contractions that I would writhe in pain, throw up all I ate and have to undergo enemas. This could last for anywhere between a few days to a few weeks.
On 4 July, I quoted a poem on Facebook: “God, limit these punishments, there’s still Judgment Day. I’m a mere sinner, I’m no Infidel tonight. Call me Ishmael tonight. (Agha Shahid Ali)”
The second aspect of the chemo was the mental and emotional struggle. I tried to remain positive, writing about shopping, watching plays, all the gifts I got, visiting Delhi’s monuments, dishes I was looking forward to eating after chemo got over. In one diary entry, I wrote that I wanted to buy a new white dress so that I could carry my “beautiful pink floral cloth and jute bag with it.” I had bought it from Bata days before my cancer was diagnosed. And then on some days, I would write about being depressed and frustrated.
May 25: “This too shall pass.”
May 26: “Confused. Very confused.”
May 27: “Feels alive today.”
May 28: “Wants to run away from everything; everyone.”
I also became increasingly aware of what family and friends really mean. Fortunately, I had an army of supporters—my mother, who stunned me with her strength, and Masi (Ma’s first cousin, just a couple of years older than me) became my two pillars. The team at the Indian Express stood beside me like a rock, extending help of every single kind.
As treatment progressed, I realised I had developed some serious behavioural problems—extreme rudeness at caregivers, followed by bouts of guilt and mood swings.
“Illness of the body is fine till it doesn’t start creeping ‘into’ you—bcz that may then lead to the illness of the mind, illness of the heart and illness of the soul,” reads a Facebook post from the time.
My hair started falling in clumps after the first chemo, leaving big bald patches. The clumps would be all over the place—in my room, in my food, on my clothes. So, one day, I went with Monika to our local salon and asked the hairdresser to cut off all my hair. There were a few curious looks on the way back.
I wrote on Facebook: “I guess I need to get used to the looks now! after all, what can be more beautiful and eye-catching than a balding young girl! arrey bhaiya, mere baal hai. main jo marzi karun. tumko kya?”—It’s my hair. I’ll do what I want with it. What’s it to you?
But the tone is different in the diary entry from that night: “I don’t recognise the person in the mirror.”
I was on leave from work then. I would read the Indian Express every day from the front page to the last, scanning for the bylines of colleagues, hoping my name would also be there soon. I was restless and didn’t want to lose any time. After consulting my doctor, I decided to return to work.
So after one-and-a-half rounds of chemo, in May 2012, I was back at the office. The brief I received from my resident editor was clear: “No spot or strenuous reporting for a few months. Work from office or home. Take leaves whenever you want.” I was just happy to be out of the house. It’s important to see the disease as just one part of life, and not something that defines it as a whole.
But besides the mental and physical challenges, the third aspect was simply dealing with the hospital. As an outpatient at the cancer specialty centre at AIIMS, I had a harrowing experience.
Two days before a chemotherapy round was scheduled, we would meet my doctor in the outpatient department, or OPD — Dr Lalit Kumar, one of the most renowned oncologists in the country, and the head of the oncology department at the centre.
The OPD waiting area, particularly in the mornings, resembled a railway station where several trains were running late. Many times, when the place would get too suffocating, my parents and I would take turns to go outside and wait at a nearby cafe inside the doctors’ hostels. The only glitch was that patients were not allowed inside that area, and my bald head always gave me away. The trick was to either sneak in when a large bunch was going inside, or, if the guards stopped you, tell them in a low, weak voice that you needed water. Once inside, you could sit peacefully in the open-air cafe, far from the madding crowd.
My turn at the OPD would usually come in two to three hours. At the OPD, Dr Kumar physically examined the patients and checked their test reports. If all looked fine, then, based on one’s body weight, he wrote down the prescribed dosage of chemo on an OPD card.
But the most excruciating part was the chemo itself. The 12 sessions at the AIIMS Day Care ward sapped me of all mental, physical and emotional energy.
All OPD cards had to be submitted at 8 am to the guards. Patients and attendants would start lining up much before that. My father would leave home before 7 am to submit mine. There were roughly 40 beds across five rooms, where between 80 and 90 patients received chemo daily.
My mother and I would reach at 9 am, carrying our lunch, snacks, fruits and juices. One never knew how much time it could take, so it was advisable to be well stocked. And then began the unending wait for my turn.
Day Care and its waiting area were on the second floor of the cancer centre’s building. The patients could take a lift or walk up a ramp to reach the waiting area, which comprised two large rooms with wooden benches and black multi-seater metal chairs. The seating capacity was for roughly 70 people, but we all squeezed in to accommodate more. Sometimes, even patients wouldn’t get a place to sit, let alone the attendants.
After every few hours, some patient or the other would try to go inside Day Care to find out the probable time of their turn from the nurses or doctors. The guards would often break into heated arguments with attendants over this. They insisted, and rightly so, that patients or attendants were not allowed in before their turn. But patients and attendants would still try to manoeuvre their way through—either by fighting, or by requesting (which always failed), or some, like me, by simply walking inside before anyone could stop them.
A conversation at Day Care between a guard and a man who was asking to see the senior resident, or SR, described in a Facebook post:
Guard (frustrated at a man insisting to see the SR): Aap patient hain?
Guard: mujhe toh nahi lagta aap patient hain.
Man: haan bhai haan.
Guard: aap patient ho na?
Man (holding his head in his hands): haan yaar.
Guard: toh naam batao kya hai aapka? (starts checking for the name in the bunch of OPD cards)
Man: bhaiya, humara patient woh bench pe leta hai. hum toh attendant hai
My turn usually came in the evening—between 3.30 and 5 pm. Once it came, it would take another 40 minutes to get an admission slip for the bed. Finally, chemo started, and I would be administered a combination of four drugs through an intravenous tube. It lasted for up to four hours.
After I was taken in, my parents went downstairs for lunch and tea.
Inside, it was very comfortable. The nurses took great care of the patients. The only problem was the toilets. There were only two of them—both Western-style—shared by the Day Care and its waiting area. So these were used by inpatients, outpatients and attendants. Though they were cleaned every few hours, they would always be filthy. Catching a urinary infection while on chemo was an extremely scary thought. So I avoided using them as much as I could. I preferred waiting for four hours and then using the toilets on the ground floor, which were Indian-style and were cleaned more frequently.
But, with all my fluid intake—the solution that diluted the drugs and the water and juices to relieve the burning sensation in my chest—I could not hold it in for so long on most days. At least one visit had to be made. So, I would always carry a bottle of Dettol and some dry tissues to clean the toilets before I used them. Still, it would be a task because many people would have urinated or even defecated on the floor. Chemotherapy can sometimes cause sudden loose stools.
I would spend my chemo hours reading. When a particular drug caused pain and a burning sensation, I would try to sleep, eat or surf my phone to distract myself.
Each day, around ten patients had to be turned away. Day Care shut at 8 pm. But many, whose chemos lasted for only three hours or less, waited till the end in the hope that if a bed in the ICU was available, the doctor might allow the chemo to be administered there after Day Care closed. One day after waiting for 11 long hours, my turn didn’t come. Two others were also there. About four patients had left in the previous hour.
The journey back home, 30 kilometres away, was always in peak rush hour. I would slouch in the back seat, tired and reflective.
By the time we reached home, I would be fatigued. The nausea, too, would start building up. So I would usually have fruits for dinner and go to bed. And dream of chemotherapy coming to an end.
In October that year, I got the opportunity to attend a conference organised by the World Youth Forum in Greece. My parents wouldn’t hear of my travelling in the middle of chemotherapy, but I managed to convince Dr Kumar of how important it was for me. Fortunately, the week of the conference fell between the dates of my final two chemo rounds. So, I left after the eleventh chemo session and got my last chemo session immediately after I returned on 10 October.
“Tired, exhausted, happy, relieved…mixed feelings as the feeling sinks in that I just completed my last chemotherapy. I am never going back into the chemo centre again,” I wrote in a Facebook post that day.
In December, I was given 15 sessions of targeted radiation therapy over a period of three weeks. A flat sheet with small cavities, made of a material that I could not identify, was dipped inside extremely hot water and then placed on my chest. It immediately took form of my body and cooled down.
Radiations were much less painful than chemo. Our turn usually came within 20 minutes. The sheet would be placed and each session lasted 10 minutes or so. It was also easier on the body. I would feel drowsy and feverish for a few hours. Towards the later sessions, I had developed slight skin irritation on the affected area. But it went back to normal within a week or two.
Since radiation happened daily from Monday to Friday, I was on leave the whole month of December. On 18 December that year, when we left for the hospital, the entire road was blocked by protestors outside the Vasant Vihar police station. I used to be drowsy all the time, so nobody watched television at home those days. When I saw many of my reporter friends in the crowd, I called up a colleague and heard about the Delhi gang rape of 16 December.
On my brother’s plea that we urgently needed to get to the hospital, some protestors helped make way for us. Outside AIIMS, too, there were large crowds of protestors. I thought to myself, “The biggest crime story of this country is happening, and I must be the only crime reporter in the city not reporting on it right now.”
Treatment ended on 26 December. I took to Facebook: “After one full year of running around hospitals, getting admitted twice, uncountable blood tests and heart-echoes, 12 chemos, 15 radiations, updates about hot doctors and residents, drooling over my doctors’ trinity—Dr Naveet Wig, Dr Lalit Kumar and Dr Gautam Sharma, after episodes of bad tempers and lovely surprises from family, friends n colleagues—FINALLY, cancer is history. God, you have been very kind.”
AFTER I RETURNED TO WORK, I was put on the trial of the gang-rape case. I would attend the daily hearings, and that way I could be inside the courtroom and not out reporting. And since the trial court was not far from my house, I could go back home directly on most days and file my stories. “Recovery is as important as treatment,” the resident editor had declared.
About a month or two after the radiation therapy, I started having back pains. Ma took me to the Indian Spinal Injuries Centre, where we consulted a senior orthopaedician. The doctor said that since radiation and chemo had ended just a month ago, my diet intake still hadn’t picked up, and this was causing weakness.
The pain was mild and occasional in the beginning. Winters gave way to the Delhi spring, and it was great weather to work. I got permission to report outdoors and I was going out more often with friends—doing all the things I had wanted to do in the last one year. So I did not take the back pain seriously, thinking that the side effects of chemo and radiation would take some months to wane. But the pain only got worse.
The weather became hotter, as if in sync with my body. The tipping point came one April night, when I walked out of the Indian Express building to catch an auto back home. Within 15 steps I felt an excruciating backache. I tried walking, but the pain sharpened. I finally put my bags down and sat on the side of the road. I broke into tears—less because of the pain, but more due to fear. Could this be cancer? But I brushed the thought away. I was anyway scheduled for a test in a few weeks.
Fortunately, two fellow beat reporters passing by spotted me and immediately came over. They helped me get up and got me an auto to return home.
A few days later, I met a spine specialist I had been consulting with MRI scans that he had ordered. He told me that he could see lymph nodes in my abdomen had swollen up, and were pressing some nerves against my spine, causing the pain. “See your oncologist immediately,” he said.
Nothing could have prepared me for this. I thought I had defeated cancer, but I had underestimated my opponent. On the ride back home, everything irritated me—the heat, the red lights at the signal, kids pestering for coins.
I googled “back pain after cancer” on my phone. And there it was. All over the internet. The first sign of relapse.
My skin, too, had been severely itchy and flaking off for many months. The inside of my clothes would be full of dry skin flakes whenever I took them off. I saw a dermatologist at a hospital near my house, who told me that the itchiness and dryness was a side effect of chemo and would go away soon. The loose folds in the skin, he said, were a result of the weight loss due to chemo and would become better as I gained weight. He suggested keeping my skin hydrated; applying moisturiser twice a day and eating more fruits.”
But soon, I found out on the internet that this, too, was a sign that the disease was back. In all these months, I had not once bothered to even check this. The thought of a relapse had never crossed my mind.
In May 2013, biopsies confirmed that I had relapsed—it was Stage 3 now.
There was a marked difference in the way I reacted towards the second cancer. I angrily walked out of the OPD room when an SR gave us the news. As I walked out, I was in tears again, and the SR and my mother came running after me.
This time, I avoided the public eye. I preferred writing in my diary:
Just when I thought cancer was behind me and it was a won battle, it stumped me. I was celebrating my win all this time, when really, I was defeated. Do not underestimate thy enemy.
It has threatened me, my dreams of reporting. It has scared me, shocked me, disappointed me. I have started to feel afraid. I feel all the time that cancer is watching me—seeing how the girl who was once so confident has lost all her mental strength. It silently mocks me; its mocking creates noises in my head.
My cancer is as resilient as its opponent — me.
THE TWO WEEKS THAT FOLLOWED were perhaps the most stressful of my life. There were continuous discussions at home about the treatment, which would eventually turn into ugly arguments. There was either a lot of shouting and breaking down, or long periods of silence.
Masi was the only one who could hold herself together and was able to think clearly. She took complete charge of the situation and guided the family through the phase.
Almost every day, we would make the rounds of top hospitals in and around Delhi. But for some reason, I did not feel convinced. Scans, tests, doctors’ appointments, consultations abroad, alternative medicine, survival percentages, costs—everything buzzed in my head constantly.
After several failed attempts, I finally managed to meet Dr Kumar at AIIMS late one evening. The building was empty and silent. I remember thinking how different the hospital looked then. Dr Kumar answered all our questions. I would need second-line chemo, which would be stronger and harsher. It would again be administered in Day Care. If and when I reached complete remission, I would undergo an autologous bone marrow transplant, in which my stem cells would be taken out of me before chemo and then put back in after it. The survival rate was about 40 percent.
Dr Kumar said he wished all his patients underwent treatment comfortably, but the load left him helpless. Each year, the number of fresh cancer cases increased steeply. “It’s 8 pm and all of us are here. No matter how much you work, it’s never enough. Yahan kaam sirf badhta hai” — the work only increases around here, he said. At that moment, looking at his greying hair and tired face, I felt sorry for him.
We asked if moving to the renowned Tata Memorial Hospital in Mumbai or going abroad for treatment could help. “You think TMH has any less workload?” he said, smiling. “It’s the same situation there. Treatment protocols are standard globally but if you still want to go abroad, TMH or any other centre, I will write a referral.”
I extended my OPD card and followed Dr Kumar’s hand as he wrote my referral to TMH in blue ink. Though I wanted Dr Kumar to treat me, I didn’t want to return to the grind at AIIMS. We thanked him and I walked out of the room with a heavy heart.
IN JULY 2013, we travelled to Tata Memorial Hospital’s satellite Advanced Centre for Treatment, Research and Education in Cancer, or ACTREC, in Navi Mumbai.
On 13 June, I met Dr Navin Khattry for the first time. A friend who had been covering health-related stories had heard great things about him.
Much to my dismay, the first thing I noticed about Dr Khattry was that he looked young. I believed that sheer experience made the older ones better doctors. But on hearing his perceptive views on treatment, my doubts were allayed almost immediately. I had finally found my doctor. And then, Dr Khattry made the pronouncement.
“But you see, I can’t take her,” he said. “If I start taking patients from other big cities, what will happen to my rural patients? Delhi has AIIMS and many other big hospitals. If you want, I can put you in touch with some doctors.”
“Sir, actually, we have already met a lot of doctors,” Masi countered. “The problem is that in her mind, for some reason, she is not convinced. AIIMS is no longer an option.”
“Why?” he asked.
“You don’t know AIIMS, sir,” I suddenly spoke.
“Really? I studied there,” he said, grinning. “Did my DM”—postgraduate degree in medicine—“from there. Dr Lalit Kumar was my teacher.”
I was stumped. It was hard to imagine Dr Khattry as a curt, rude SR like the ones at Day Care.
“We already have a long waiting list here for transplants. I am really very sorry,” Dr Khattry told Masi, returning my scans.
No, please, this is not happening, I said in my head. I had finally found a doctor I could trust, but he had refused to take me. I broke down in his office. “Sir,” I said, “I have come from very far. Please don’t send me back.”
Dr Khattry agreed to take me. “Chemotherapy begins tomorrow. Get admitted in the morning,” he said. He then instructed his assistant to take my blood samples.
That night, we went to south Mumbai, where we ate at a beautiful seaside restaurant with open, white French windows and spent the night at a popular hotel. After a hurried but good breakfast, I left with Ma and my grandfather for ACTREC, two hours away. Speeding through the rain, I watched the traffic on the opposite lane snail by, wondering if this city indeed fulfilled dreams.
The treatment at ACTREC entailed strong chemotherapy, followed by a bone-marrow transplant. Second-line chemo was much harsher on my body. I received four cycles in all, before being taken up for the transplant.
After the first cycle, I developed a severe stomach infection that made me pass blood in stools and drained me of all strength. I was admitted to the hospital for the next three weeks. Another later cycle caused a lung injury, for which I had to be put on oxygen support for several days.
But whatever harm chemo did, the hospital’s doctors, other staff and the general environment more than made up for.
ACTREC is nestled amid the hills in Kharghar, off the Mumbai–Pune highway. It was the peak of monsoons and the place had become lush green. Little waterfalls had sprung up all around. Mist would descend on the hills each time it rained and the weather was really pleasant.
The bone-marrow transplant, or BMT, unit of ACTREC in particular, has been able to develop a unique supportive-care system, which I believe is among the best across the country. The only other centre I have read such positive accounts of from patients is Christian Medical College in Vellore.
My chemo lasted four days, and I had to be admitted during that period. Patients’ response to the treatment was constantly monitored. Our vital signs were checked every two hours. Twice a day—in the mornings and evenings—Dr Khattry and another doctor would make rounds to review our progress. If a patient’s condition worsened, then they would make several rounds to review her state—irrespective of the time.
Even after being discharged, the doctors and hospital staff were available at any hour or any day of the week. Unlike at AIIMS, the contact numbers we were provided actually worked, and we were responded to quite promptly. In case of any complaints or deterioration of health, we were to immediately inform the on-call doctors. Suddenly, I was in a place where the SRs knew my name.
What had begun as a very depressing phase for me, gradually started transforming. I made friends with my doctors, nurses and fellow patients. Everyone knew everyone and I felt reassured.
Moving into a rented flat a stone’s throw from the hospital also helped. Real estate in Kharghar was affordable, and we managed to find a beautiful, airy, well-lit house in our budget, with a swing and balconies. While Ma stayed with me permanently, the rest of the family and some of my close friends made a roster—with each person taking turns staying with us.
At my grandfather’s suggestion, I picked up terracotta painting. As the colours spread, the burnt earthen pieces came to life. The first piece I ever made—a tribal mask—was for Dr Khattry. It’s still on a wall in ACTREC. The three wards of the BMT unit, the OPD and Dr Khattry’s office are all full of paintings, sketches, drawings, poems and works by patients. I painted a bunch of other pieces and distributed them to friends.
I was admitted for the transplant in November 2013. The three weeks I spent inside the BMT ward were a complete laugh riot. I would chat with doctors, nurses and the hospital staff about anything and everything — from politics to books to food to travel to shopping. Bit by bit, I finished my three most prized terracotta pieces from inside the ward.
However, after my discharge, I was pretty depressed, owing to a personal setback. This was reflected in my health: three months later, my scans were still not clear. Two days before I was to leave for Delhi, during an OPD appointment, Dr Khattry said that he could see “something unclear” in my PET scan. This was too small to be confirmed yet with a biopsy. It could be an infection, or maybe “the disease” was back.
Dr Khattry suggested we could try some oral chemotherapy till things became clearer, but I refused. I had taken enough chemo and treatment, and I did not want to take in any more toxicity. During the course of my treatment, I had come across numerous reports on “effective cancer remedies.” One that interested me was curcumin—an extract of turmeric. I decided to give it a shot.
On the chilly, misty afternoon of 14 February 2014, as my aircraft landed in Delhi, tears were rolling down my cheeks.
THE STATE OF DEPRESSION finally ended when I visited Mussoorie in March 2014. The author Ruskin Bond, whose character Rusty had been a childhood friend of mine, lives there. Rusty had often comforted me when I had been particularly low. He made me laugh and our love for nature and simplicity always bound us close. Meeting Bond at the Universal Book Store on Mall Road felt like meeting Rusty after a brief gap.
A few late-night discussions with my best friend from college, long walks from Lal Tibba to Sisters Bazar and a lot of laughter really helped me recover. Three days later, as we boarded the Shatabdi at Dehradun station in the wee hours of morning, I was back to my old, happy self.
The brief melancholic spell notwithstanding, during the period post-transplant, I was happier than I had ever been. I don’t think I can ever express my gratitude enough, particularly towards my mother and Dr Khattry, for giving me the best 16 months of my life. I went back to reporting, and wrote some stories I am proud of. I was still working for the Indian Express, where I had been given new beats: conflict, health, disability rights and heritage.
I travelled, shopped and ate. I wish I knew a better way to put it, but I simply ate. I ate Ma’s food, at restaurants, at homes of neighbours, relatives and friends. I don’t think there ever was a meal when I did not eat what I really wanted to. And if nothing else, I went to Saravana Bhavan in Connaught Place, which became my second home. Like Ma, they never disappointed. I truly learnt, perhaps for the first time, what it meant to live.
All this while, I was on no other modern medication except some calcium supplements and an antiviral drug. I was, however, quite regular with my curcumin tablets, which I had begun immediately upon my return.
Though my scans were never completely clear in any of the follow-ups, there was also no noticeable change—increase or decrease—from what it had been in February. However, physically, I felt absolutely fine and energetic. Of course, I was quite cautious about my diet, exercise, infection-control, and tried not to tire myself out. But these were small concessions and I felt truly, perfectly happy.
IN APRIL 2015, Monika was getting married. Wedding preparations, as they usually are, were vibrant but hectic. Engrossed with work and shopping for the wedding, I hadn’t found time for anything else for days. So when an old friend living a few blocks away invited me to his birthday party, I decided to go. At the party, I had a glass of red wine—what I always have when I occasionally drink.
That night, I simply couldn’t breathe. I felt choked when I lay down. I sat up in my bed through the night, gasping for air. Each time I sneezed, coughed or yawned, I felt a shooting pain and discomfort. The sounds woke up my mother.
This time, I immediately knew what was happening. Drinking does not cause lymphoma, but even the slightest exposure to alcohol, say in beverages, perfumes or room sprays, causes irritation to the tumours. The disease was back. Or rather, I should say, it had grown, since we all knew it had never really left me completely.
The next morning, it was Monika’s engagement day and I was supposed to leave my house early to help her get dressed. But my face was swollen—a painful reminder from the past.
I was crying and panicking, and urgently called my go-to doctor in Delhi: Dr Sushant Mittal, a young oncologist and a former student of Dr Khattry’s. I sent him pictures of my facial swelling through WhatsApp. He suggested a few medicines and I managed to pull through the function looking close to normal again.
Dr Mittal wanted me to get a few tests done immediately, but the wedding was just two days away. It’s tough to describe how I really felt then. My best friend was getting married; we had prepared for this for weeks and I was really excited. Yet, I knew what lay ahead for me. At that moment, I could not share my feelings with the one person I really needed to talk to.
Eventually, the wedding was fun and happy. For those few hours, I was immersed in happiness and satisfaction as everything had turned out well.
After the wedding, in the wee hours of the morning, I returned home to cancer.
THE SAME AFTERNOON, I got admitted at the hospital where Dr Mittal practised. The scans and reports confirmed the cancer had metastasised—it had moved from one location to another and had spread to my chest, abdomen and lungs. I was discharged after a couple of days, and had to now decide the next course of action.
Each person has her own way of dealing with a terminal disease. Some turn to prayer, others to art, and others yet to something else. I became obsessed with arts and crafts, especially terracotta painting. A friend, who is an art therapist, also helped out. I realised how colours helped instantly lift my spirits.
When my mind felt too cluttered, I went back to Ruskin Bond, who made life seem simple again. His The Writer on the Hill is always by my bedside, along with a copy of the Bible. I kept going back to verses and anecdotes for solace.
And then there are some things you turn to all the time—in happiness, sadness, boredom, irritation, anger, frustration, hope. One such source of pleasure was the website Eatstory.in, where Neeru Singh churns out food stories from across India. It’s hard to explain why I like that website so much. Maybe it’s my love for food, or perhaps the liveliness and passion with which she writes.
In August 2015, Dr Khattry insisted I needed another transplant, but I was reluctant. I did not want to go through chemo again. Also, my brother was about to get married, and I did not want to be inside a hospital during the wedding. But as the disease grew, it became clear that a transplant was the only option. My brother’s wedding was brought forward by two months, and was held in December. After the wedding, in January 2016, I was back at ACTREC for another four months of chemo.
THE FIRST TIME my cancer returned in 2014, it was no longer sensitive to the kind of chemotherapy treatment that I had received earlier. While second-line chemotherapy had been effective at treating cancer, it had also destroyed normal stem cells in my bone marrow, which generate blood cells. This necessitated the autologous stem-cell transplant that I went through in 2014, where my stem cells were collected and stored in a freezer before chemo, and then reinfused into the body after the treatment.
Cancer sometimes returns even after an autologous stem-cell transplant. In such a situation, doctors often try another round of high-dose chemotherapy, followed by a transplant of stem cells from a donor. Besides simply repopulating the bone marrow of the recipient, the procedure seeks to introduce donor cells that see the cancer as foreign, and mount an attack against it. This procedure, which I would go through now at ACTREC, is called an allogeneic stem-cell transplant. As with autologous transplants, here, too, doctors first try to achieve complete remission through chemo, and sometimes radiation. While the intention is that the donor’s immune system will find lymphoma to be “foreign” and start attacking it, it can also instead attack the host’s organs, which it can also recognise as foreign. When that happens, doctors call it graft-versus-host disease, or GvHD.
A suitable donor is selected after a genetic test. In my case, it was my brother. But doctors walk a fine line in choosing donors. The greater the degree of relatedness between a patient and a donor, the lower the risk of GvHD—but the attack on the lymphoma is also likely to be weak. The greater the genetic difference, the higher the risk of GvHD—the benefits, though, if it works out, are also greater. To tackle effects of GvHD, the doctors use immunosuppresants, drugs that weaken a patient’s immunity.
With this tug of war going on inside her immune system, the patient is quite susceptible to infections after a transplant. Once contracted, a bacterial infection spreads fast through the body, with the most vulnerable organs being the lungs, skin and gastrointestinal tract. Therefore, the first 30 days after a transplant are the riskiest. The counts of vital blood cells begin to fall due to chemo. Patients are kept in complete isolation and a sterilised environment; the temperature is controlled; air filters are installed and a high pressure is maintained inside all rooms; and each patient is provided constant, undivided attention to prevent infections.
I AM NOW INSIDE an isolation room at ACTREC’s bone-marrow transplant ward. It’s 29 April, and my final chemo cycle has begun.
There are six isolation rooms inside the BMT ward; each has wi-fi, an LED television, heart and pulse monitors, weighing machines, a toilet chair and a landline intercom on which patients can speak to their family members. I moved into the room with my laptop, books, crayons, pencil colours, colouring paper and other crafts materials. My room has a huge window that overlooks the Kharghar hills.
In one of the rooms is Prashant—a 13-year-old boy from the city of Shegaon, in Maharashtra. His father is a farmer, and owns two acres of land where he grows soya bean, cotton, wheat and other crops. The harvest completely failed this year. Prashant’s treatment is being funded by several NGOs. Dr Khattry recently gifted him a Samsung mobile, which he uses to play games and send voice messages to fellow patients every morning on WhatsApp. In another room, Benazir—a 26-year-old mother of two from Jammu and Kashmir—is undergoing treatment, which is also being funded by non-profits.
Days for patients start at 3.30 am. For two hours, the catheters that are used to inject chemo drugs are set up for them. Blood samples are drawn from the catheters and sent to the testing lab. Samples of urine and stool are also taken for tests over the course of the day. Pulse, blood pressure and body temperature are checked once every two hours round-the-clock. Weight is monitored twice a day.
Doctors’ rounds in the BMT ward take place between 8 and 8.30 am. After the rounds, Dr Khattry briefs the patients’ relatives, who gather in a waiting room outside the wards. Cellphone signals are poor, and family members take turns using the intercom phone to speak to patients, each for only a few minutes at a stretch.
Then I have my breakfast, which comes packed from the hospital’s kitchen. Two boiled eggs and ragi kheer are fixed items. The rest of the menu can be any kind of absolutely tasteless food—aloo paranthas, purialoo, uttapams and godawful ragi dosas.
After breakfast, I usually read for a little while—I moved in with The Way It Was Once, a book on the life and times of the legendary poet Faiz Ahmed Faiz; Palestine by Joe Sacco; The Jail Notebook by Bhagat Singh; Laughing Gas and Thank You, Jeeves by PG Wodehouse; and the Bible.
It’s important to keep yourself happy. So, when I feel low, I read or draw using my pencil colours—mostly images of myself with billowing long hair, reporting from the mountains of Kashmir, Kabul and Tibet.
Between 10 and 11 am, one of the cleaners keeps hot water for my sponge bath inside the bathroom. With help from a cleaner or a nurse, I take the sponge bath sitting on a stool, and drink a cup of green tea right after.
At exactly 12.40 pm, I switch on the television to watch Humsafar—the famous Pakistani soap opera starring Fawad Khan—on the Zindagi channel. Hareem’s open-heart surgery has been successful, and Asher is rediscovering his love for his wife, Khirad, who allegedly eloped with her lover more than four years ago.
After Humsafar ends, it is lunchtime. Since the air-conditioning is really heavy, it is best to have food as soon as it comes or it becomes cold. Lunch is no less torturous than breakfast, with koftas being the only exception. After lunch, I read until I fall asleep.
With nurses constantly coming in and out of the room—to give medicines and check vitals—it is hard to get more than three to four hours of sleep at a stretch. So, patients are encouraged to rest whenever they get time. Ma is allowed to visit for two hours a day, from 4 to 6 pm.
Infection control is a big priority. Each time they enter a patient’s room, cleaners must put on a fresh pair of gloves, which are kept in boxes outside every door. All tasks—cleaning, assisting sponge baths, discarding patients’ urine and stool—are carried out while wearing these gloves. Before exiting the room, the gloves are discarded. This ensures that there is no chance of carrying hand-borne infections from one patient to another.
When chemo is being administered, fluids in the form of normal saline are constantly being given to the body to dilute toxic drugs. At the same time, frusemide injections are given to prevent the body from absorbing too much salt, which they do by increasing urinary output. The drugs play a game of tag inside the body.
4 MAY: RADIATION THERAPY STARTS. I am wheeled out of the isolation room and taken to an underground facility, where a bunch of assistants put up nodes on my palms and other parts of the body. The “full-body radiation” lasts about 40 minutes. Afterwards, for a moment, I find myself alone in the dark room. The lights from the radiation machine cast a shadow on a wooden wall. For a few moments, I stand there, staring at the outline of my bald head.
5 May: I undergo the bone-marrow transplant. The procedure begins at noon and lasts for over an hour. Four nurses and a doctor oversee the procedure. I feel a general unease throughout, accompanied with nausea, drowsiness. But gulab jamun at night makes up for some of the pain.
6 May: I develop a slight fever and loose stools. I’m going nearly eight or nine times a day. Lunch also gives a rude shock: khichdi, apple stew and boiled potatoes with curd.
IT’S 27 MAY, and I am still inside the isolation room inside the BMT ward. I think at all times—about Wodehouse, Zomato, the Bible. I take a bite of hospital food, and imagine it to be Burma Burma restaurant’s triple salad sampler, or their steamed burnt chilli garlic buns, or Jama Masjid’s chicken changhezi.
Inside, I receive news of the photojournalist Ravi Kanojia’s death, in an accident while reporting. Ravi was a friend and a colleague. On an assignment in Udaipur in 2014, I pleaded with Ravi—as we often do with our photographer friends—to click a very good picture of me. He did, framing my face against the light from a candle. Sometimes, I look at my reflection in the mirror—bald, weak, with sunken eyes and a swollen face—and go back to that photo to remind myself that I did not always look like this. If I managed to look normal after one transplant, maybe I could do it after another.
I read of the struggles of those before me. Bhagat Singh, Faiz Ahmed Faiz, or the people of Palestine and Kashmir—resilience is the only way forward. Giving up is not an option.
I am taken off an oral diet, and put on intravenous feeding. Even water has to be taken in sips and not in large quantities. My lips and mouth are dry.
This time, I am doing little terracotta painting. During chemo, I painted tribal masks for Umar Khalid and Anirban Bhattacharya, the two Jawaharlal Nehru University students arrested on charges of sedition. It seemed apt—both are writing dissertations on tribal issues.
I was supposed to be discharged today, but it’s not happening. I was positive I would be back home by now. I had planned to eat rajma chawal and watch a movie in our living room, away from hospital. I had ordered a new husk-table lamp for my room. In the evening, I would ask Ma to make one of her soups—tomato, broccoli, or maybe mixed vegetable.
But the last four days have been awful. First, I unexpectedly started having semi-solid stools. When that became better, I got occasional low-grade fever, which ranged from 99 degrees to 100.3 degrees Fahrenheit. And finally, when that got sorted, two days ago, I noticed I was urinating way less than I usually do—once maybe every five hours. I am constantly on positive fluid balance—the input is more and output less. Where’s that fluid going? I notice its colour is also darkish, almost rust
Something is not quite right. Fluid imbalance can make a patient increasingly breathless. I’m puffy in the face, my blood pressure has increased and so has my weight. Right now, I weigh 49 kilograms.
I wake up early on the morning of 28 May, and, on instinct, start reading the Bible. The page I open to is a verse in the gospel of Luke. There are so many instances of Jesus healing the sick. He made a man who had been invalid for decades pick up his mat and walk. I, too, am hoping for a miracle. Somehow, this urine business be sorted, God!
The doctor tells me I will stay inside isolation for a day or two more, and then be moved to an outside ward. There, I will be kept for a “few days.” Nobody knows what a “few days” means in a doctor’s dictionary: two, four, more?
For the first time this month, I feel seriously disheartened. For a while, everyone was telling me I would be out in a day or two. And here, some or other minor disruptions—stupid stools messing up, unnecessary fever and now this less urine output—are keeping me from home. The hospital food seems almost inedible now. Speaking to Ma at her usual time of around 9.30 am, I break down. She calls again but I don’t answer. She must have left after that.
I try to lift my spirits. I watch a few music channels for a while, read some Calvin & Hobbes and about where to find the best silver jewellery in downtown Srinagar, and check the menus of Bercos and Chew—two of my favourite restaurants in Delhi. By afternoon, I am feeling much better. And then, Ma drops the bomb. She comes in early for her daily visit, and half an hour into the meeting, the word “GvHD” slips out of her mouth. I don’t think she is aware that I don’t know about this. The doctors have not told me anything. But they must have told Ma that I have some kind of GvHD.
Let’s see how the next few days pan out. Sometimes, your worst fears are confirmed, but you still try to run away from reality. But sometimes, you don’t realise things are going in your favour — no matter how you may feel about those things at that moment.
After her second transplant, Gulati contracted an acute form of GvHD. Her body, though now cancer-free after chemotherapy, did not accept the donated stem cells. On 22 July, the count of her white blood cells crashed suddenly, crippling her immune system. On 29 July, she died of a severe lung infection.
Sumegha Gulati was a Delhi-based independent journalist, who wrote about conflict, health, disability rights and heritage.