You have serious health issues. On first assessment, the doctor gives you less than 100 days to live. More than 20 surgeries and 10,000 days later, who do you thank for letting you be you, not just alive? Yes, your own attitude matters. Then there is your doctor, the medical team, friends, and close family. If you are very lucky, you will also be grateful you had Nancy on your side.

If you have seen the movie, I want to talk and read the books by Arjun Sen, you will know who Nancy is (was, sadly). I had watched the movie before I read his books Raising a Father followed by Unquit Forever: Keep yourself in the game. The latter (the title of which sums up Arjun’s attitude towards life despite a prolonged standoff with death) told me more about Nancy.
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When Arjun met Nurse Nancy for the first time at the hospital, “I heard her scream, ‘Arjuuuun’ way before I saw her.” Then, she “pulled me into a bear hug.”

Then Nancy asked him a question. Did Arjun think of himself as friend and family? She explained: “You wake up with yourself, you are with yourself all day, and you go to bed with yourself. You are your best friend and companion. There is no hiding from that.”

“Arjun, in your journey of living your life, you have to learn to trust me now. I know it takes time to build trust, but in our case, just force yourself to start with 100% trust and then see how I live up to that.” Those are Nancy’s words as quoted in Arjun’s book. She asked Arjun to let her into his life so that she could help him.

Once Arjun wondered how she managed to connect so deeply with every patient. Nancy replied: “You didn’t come in as a patient. You came in as a human being. Don’t you deserve love, kindness and attention? That’s what I do. I fall in love with every patient every time. Unless you love the person, you cannot care. I have heard others say that one has to love what they do. That does not work for me. How can I love my work? I love people and every patient that walks into my life. I fall in love with them. They deserve the love.”

There was a time when Arjun, the consummate marketing man, was considering suicide. Nancy happened to call when he was driving and sensed what he was planning. She said, “Arjun, hear me out clearly. You are a survivor, not a quitter. Your mind will not let you quit. Whatever you are planning, you could fail in it. Do you know what will happen next? You, the branding man, will get defined as the person who failed both in life and death. Is that how you want to be known?” That prompted Arjun to take a U-turn in life and convert the bothersome headwinds into positive tailwinds.

Then, one day, Arjun got the news that Nancy was no more. She had taken her own life. Why? Her husband told Arjun: “Nobody knows why it happened. She finished her shift and left quietly. Her phone was turned off. I guess everyone had Nancy. You, all her other patients, doctors, her friends, and us, her family. But Nancy did not feel she had anyone. She must have been hurting badly, suffering all alone.”

This is how Arjun sums up his connection with Nancy in his book: “She walked into my life, ready to rescue me. But she never made me feel rescued. She made me feel like I was still me, but a better version. Unfortunately, our connection was only about me. She knew everything about me and how to help me get back in life, not just live but run in life. I wish at least one more time I was standing in front of her, with open arms and calling her name, ‘Naannnncyyyyyyyy!!!!’ and inviting her into a big hug.”

Even if you have seen the movie, do read Arjun Sen’s book, Unquit Forever: Keep yourself in the game. It will take you deeper into his life, and the lives of those who made his life a marathon he successfully started and finished—including Nancy. 

Are you fortunate enough to know a Nancy who loves the people under her care beyond the clock and duty? And if you do, do you really, really know her to encourage her to live on, love on?

When the doctor was first describing her cancer, Katie Doble, 32, stopped listening for some time. Because she had a decision to make. Should she be planning her wedding or her funeral? Her boyfriend had proposed to her just ten days earlier.

Katie went on to get married. She also prepared for her funeral but, thankfully, that must wait.
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Her first symptom had appeared in May 2013—"a strange vertical black bar swimming through her field of vision”. It was diagnosed as uveal melanoma, a cancer of the eye. The first line of treatment involved a “radiation-emitting metal disk placed in the back of her left eye”. As feared, that led to her losing vision in her left eye.

On the positive side, her doctor said the chance of her cancer spreading was less than 2 percent. In April 2014, an ultrasound found no signs of metastasis.

Seven months later, just after Katie’s engagement, new scans revealed that her liver now had a dozen lesions. Like most afflicted with the deadly C, Katie was anxious to immediately start the treatment the physician had suggested, the one that would have given her some 16 months to live.
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Fortunately, she had a rare advantage. Her father was a doctor, who was already exploring more promising options in the stage of clinical trials. On his advice, she refused the treatment and entered a trial at Memorial Sloan Kettering Cancer Center, New York. 

Five months into the trial, her tumors had grown. She was moved to a second arm of the trial that added a second medication to the regimen. The side effects of the combination “kicked my ass”. But she braved it. Determined to overthrow cancer as the ruler of her life, she went skydiving. As she floated down, she tasted the salt from her “happy tears”.

She had to exit the trial because the tumors continued to grow even after two months on the combination therapy.

Then she joined a second clinical trial at UCHealth, Colorado in September 2015. That too she had to leave after one treatment on account of gastrointestinal complications.
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Given that it is not easy to access a clinical trial, and the heavy costs involved (estimated at $600 a month in 2015), most cancer patients hardly get to join one. Katie was already a unique case having participated in two. 

In November 2015, she opted for an FDA-approved treatment of radio embolization. Thirty million tiny radioactive beads called microspheres were injected into the blood vessels supplying the tumors in the right lobe of her liver. It worked! The tumors stopped growing and some even shrunk.

Heartened by this, Katie took a break to focus on building a house, “as one does when you’re trying not to die.”

​She had outlived her doctor’s first dire prediction, but the tumors were thriving in the untreated left lobe of her liver. So, she joined a third clinical trial, again at UCHealth. That trial too went on to fail.

In September 2016, they repeated the microsphere treatment, this time for the left lobe. The cancer gradually stopped growing.

One morning in May 2018, she stumbled out of bed struggling for her balance. A brain MRI revealed that the cancer had now spread to her brain. Gamma Knife radiosurgery eliminated the tumor. However, her liver tumors were growing again.
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Going by a study published in 2019, “the four-year survival rate for Stage 4 uveal melanoma patients is only about 2 percent.” By now, Katie had taken part in three clinical trials and also received three additional treatments. Yet three or four tumors persisted. 

In July 2020, Katie started her fourth clinical trial at the University of Pittsburgh Medical Center. Dr Udai Kammula, the doctor leading the trial, had been after uveal melanoma for almost a decade, because it is “so devilishly difficult to fight”.

Dr Kammula injected her with 111 billion new T cells, after first wiping our Katie’s own immune system. A month after the procedure all tumors were gone or shrinking. The one which did not was surgically removed.

​Finally, Katie was cancer free. 

​Today, she works as a recruiter and gives talks to pharmaceutical and biotechnology companies and nonprofit cancer organizations. She lifts weights and rides her exercise bike when she and Nick are not enjoying golfing, biking and hiking.

“Had I made the choice to not get a second opinion, I would be dead,” Katie said. 

How would Katie have fared, if she were in India? Is it possible for a patient in India, handed a grim prognosis, to take a chance with an experimental remedy that is under clinical trial?

Dr Santam Chakraborty, Senior Consultant at Tata Medical Center, Kolkata, co-author of a paper on “Geographic disparities in access to cancer clinical trials in India” is not very optimistic.
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The best person to inform a cancer patient about a clinical trial possibility is their oncologist. However, as India does not have a very integrated healthcare system, the oncologist is most likely to offer trials running in the hospital they are attached to. According to Dr Chakraborty, given the limitations of the clinical trial registry in India, “finding a clinical trial which is appropriate for the patient is a difficult endeavor for the oncologist.”  

In the US and Europe, an efficient, integrated healthcare system makes healthcare records available to all centers. In India, if a patient undergoing treatment in Hospital A wants to undergo a trial on in Hospital B, they will have to undergo a full workup and could be turned away at the end of it for failing to fulfil the eligibility criteria. The patient could have avoided the hassles and the cost of transfer if the data were easily accessible to Hospital B from the records of Hospital A.

There is also the larger problem that in India, as yet, “the clinical trial scenario is not geared towards providing really cutting-edge solutions.” In advanced countries, a new therapy is researched for decades in a laboratory before it becomes eligible for evaluation in a patient.

In India, clinical trials are usually run with products already evaluated in another country. A pharmaceutical company may evince interest if and only if it is sure that there will be a market for the drug in India.
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Clinical trials in India mostly focus on finding new uses of existing treatments or evaluating efficacy of treatments that have been evaluated in the west or finding ways to make the treatment more affordable. This is in stark contrast to the scene, say in the USA, where a novel innovation could be on trial.

“Even if I were aware that a trial very relevant to my patient is being run in an institution like Memorial Sloan Kettering Cancer Center,” Dr Chakraborty said, “I can offer that to my patient here only if the same trial is being conducted at a center in India.” Most early Phase I trials done in India are for “me-too molecules”, meaning medication already established outside.
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It is mandatory for every clinical trial to be registered with Clinical Trials Registry of India (CTRI). “As a patient, I can participate in a trial if I fulfil all the eligibility criteria, provide my consent and my physician is an investigator in the trial,” Dr Chakraborty pointed out. 

Whether in India, the US or elsewhere, there is no telling if every person who enters a trial will be blessed with a positive outcome like Katie was after all her trials. While everyone’s outcome may be unique, Katie has been sharing her experience with all.

“I gave my first talk in 2017, giving an acceptance speech for The Courage Award from the Melanoma Research Foundation. That’s when I realized how much I loved sharing my story. It gives people hope. It now feels like it’s what I’m called to do. It’s my way of paying it forward and saying thank you to all of the people who have helped me along this journey. I don’t want to hoard the wisdom I’ve gained from this horrible experience and expect other people to just figure it out on their own. It’s really, really hard to navigate this. If I can help just one person and change the course of their treatment for the better, then it’s worth it.”

It is never easy for the patient and the caregivers. Who helped Katie pull through it all?

"I've always identified both Nick and my Dad as my caregivers. Nick is my moral support. And my big spoon! He takes care of me physically and emotionally. And my Dad is the one who has helped us navigate this journey and understand the decisions we’ve had to make. I designated them both as my medical powers of attorney because I didn’t want either of them to face difficult decisions alone."

Do Katie and Nick have a prescription for those who are going through such tough times, so that they can cope better? Yes! Communicate and laugh!

"We still manage to laugh our butts off!" Katie added, "one of my lasting side effects from all of my treatments and the abdominal surgery is that it really hurts when I laugh hysterically. So, when I get that keel-over, gut-wrenching laughter, I can’t breathe. And he [Nick] loves it!"

​Rani was 11 or 12 when an earthquake destroyed her home and family in a small town in north India. One year later, after he collected the earthquake relief money from the government, her uncle, the only other survivor, kicked her out.
Rani landed in Mumbai, where the people of the big city and their ways made her uncomfortable. Finally, she reached Pune and found employment with a family.
She became the full-time caretaker to the old woman of the house. They forged an affectionate bond. The old woman promised Rani better days and a better living. Rani’s prime years passed her by as she lived for her dreams.
Many years later, the old woman died. And Rani was back on the streets.

​She found a job at a school. After some years, she started working at the home of the head of the school.
When her bleeding and the pain in the abdomen did not ease, her employer took her to a government hospital. The diagnosis: cancer of the cervix, malignant and very advanced.
Her employer then brought her to what Rani thought was another hospital. At the time of admission, she reassured her employer, “I will come back and work as soon as I get better.” Her employer snapped back, “I never want you to come back.”
The palliative care centre admitted Rani as a destitute.

​As the pain subsided and she started feeling better, Rani did not know how to deal with the attention she was getting. The nurse often found her sleeping on the floor at night. “The bed makes me feel like a queen. I am more comfortable here.”
Now that she had a new family, Rani suddenly became a child and started making fancy demands. Vada pav, puri bhaji, lassi and Coca Cola were among her favourites. “And please don’t get those from the canteen, buy it from outside.”
The raging cancer would not let her keep anything down. One bite and she would throw up. One sip, and she would apologetically close the bottle and keep it away, to try again later.
“No more fancy food; just eat what we give you,” the nurse said in mock anger. Rani laughed; the nurse helplessly joined in.
The attendant gave her a bath, combed her sparse hair, and tied it into a thin bun. The security guard came with a flower. Would it look nice on her hair?
One night, Rani died peacefully. She was 70.

The employer sounded relieved on hearing of the death and reaffirmed that the institution was free to do what they thought fit.
The institution had a signed document that authorized them to do what they felt right with the destitute before and after her death. The police had endorsed the document.
The crematorium got a copy of the document too, along with the death certificate and a copy of the driver’s license of the person who took the body there.
They all took care to make sure they would not be in trouble later.
As for Rani, after some 50 years of serving others and 20 days of living for herself, she did not care anymore.

The new C is in the spotlight. The old C remains. There is no masking the fears about cancer. And there is no distancing the misconceptions. 
Chanda. The name of the girl is not. But the snatches of conversation, more about her cancer than her, are all real.   
Father to doctor: “She keeps getting fever and is so weak.” 
Doctor to father: “Your child has blood cancer. We will have to start chemotherapy.” 
Mother to father: “But she is only five. How can she have cancer?” 
Chanda to mother: “Did you fight with Papa again? Don’t cry, I am there for you.” 
Father to mother: “Never again will we cry in front of her.” 
Father to mother: “I have no money left. Don’t know whom to ask. Let’s release an appeal.” 
Stranger to parents: “Saw your appeal. Oh, she likes cars! Come, bring her, let us go for a ride. Keep this money. Why does it matter who I am?” 
Mother to school principal: “Doctor said she is recovering and can start school. Please admit her.” 
Principal of school 1: “If other parents come to know, they will withdraw their children. As it is, we are constantly fighting with parents.” 
School 2: “What if her cancer spreads? Other children will also get it.” 
School 3: “We can’t let her skip class every time she has to go for treatment. What is the guarantee she won’t get it again?” 
School 4: “She must always wear a mask, sit separately and not mingle with other children.” 
Mother’s letter to father: “I am going. I don’t want to spend the rest of my life looking after a cancer patient.” 
Chanda to father: “Why are you crying? I am there for you.”