Illustration: Jayachandran/Mint

In a room no larger than an ATM booth, with crutches stacked against the walls, 10 women shuffle about listlessly, waiting for a class to begin. Most have come from different parts of Maharashtra, some from states like Kerala and West Bengal. While there are some differences in their socioeconomic backgrounds, they are all united by one thing—breast cancer. Some have undergone single or double mastectomies.

On this particular Wednesday in March, these women are waiting to be discharged from Tata Memorial Centre, but only after they attend this class with their caregivers. The class is facilitated by Mamta Goenka, a 61-year-old cancer coach, who guides breast cancer patients on post-op care.

Goenka initiated the class in 2007, after seeing how oncologists were hard-pressed for time to respond to all the questions a patient may have. Her 3-hour class, held twice a week, is free (but compulsory) for patients.

She also conducts free one-on-one sessions on request for breast cancer patients. Goenka is among a small number of cancer coaches in the country who provide a personalized service to help patients get through a minefield of questions about their recovery, including nutrition and prosthetics, but, more importantly, to raise their morale. She offers them the strength to return to a “normal” life. To a patient who wonders when she can resume cooking at home, Goenka says: “Start tomorrow if you can. Return to your life as much as possible.”

Goenka says she detests the phrase “be positive”. “The point is to coach patients to do that precisely! You have to teach them the skills to cope with cancer,” she says.

The term cancer coach is relatively new in India, especially to those who haven’t experienced cancer in their lives or families. Mumbai-based Vijay Bhat, who runs one such service called Cancer Awakens, sees it as a response to a “gap” in cancer treatment. “I call it a non-medical gap or a psychological gap, or even a psychosocial gap,” he says.

By now, most people are aware that cancer is a multifaceted disease, often with long-term implications on mental health, finances, family and career. Those affected may get through cancer, but what about depression? Bhat observes that when people face cancer, they are, in fact, facing an existential crisis. He explains: “Patients are often confronted with the possibility of their non-existence. Besides, there is so much anxiety and stigma attached to the disease that they are left feeling vulnerable. In such situations, oncologists are so busy treating the patient—as they ought to—they don’t have the bandwidth to look into the emotional, mental or even spiritual aspects to facing cancer.”

From survivor to coach

Tata Memorial Centre saw 74,440 new cases in 2018, higher than both 2016 and 2017. Of these, 85% of the patients came from outside Mumbai for subsidized yet quality cancer treatment. On any given day, the hospital crackles with the energy of a battlefield.

In 2018 alone, India saw more than 1.1 million new cancer cases, reports a Globocan survey with an expected increase to 1.2 million by 2020 and 1.9 million by 2040. Bhat believes these numbers are a combination of early diagnosis, lifestyle choices and environmental factors. It’s no longer pertinent to blame genetics alone, he says.

Bhat set up Cancer Awakens about a decade after he was diagnosed with colon cancer in 2001. He was a London-based advertising professional when a company-sponsored health check-up revealed anaemia, unusual for a man of his constitution, doctors said. It turned out to be colon cancer and Bhat, aged 40 then, was asked to go in for surgery the very next week.

After surgery, he sought reinforcements from a range of sources—his wife, Nilima, introduced him to yoga; a Chinese doctor in London, Song Xuan Ke, restored his digestion and immune system; a London-based clinical psychologist, Bill Mitchell, helped him with cognitive behavioural therapy; and Father Lancy Pereira, a Jesuit priest and the former principal of St Xavier’s College, Mumbai, met him in London and coached him on a holistic approach to healing. Nearly two decades later, Bhat believes he has been cancer-free because he got high-quality help.

Goenka has a similar story to share about her post-op classes. First diagnosed with breast cancer in 1998, she fought the disease two more times. “I used to wait my turn for chemo at Tata Memorial Centre, talking to other patients there, and realized that many women were clueless about the treatment. I was confused then—was ignorance bliss or should I share with them what I knew?” she says.

Goenka, who is married to Pawan Goenka, managing director of Mahindra and Mahindra, says she came from a socioeconomic background where she had access to knowledge on the subject, something that isn’t available to all cancer patients, especially those from a lower economic strata. Addressing the women in her class, she says: “Now, let me come to an important part. Your biggest worry, sometimes, isn’t cancer, but your hair. You wonder how you can step out in public again. You will face cancer but, somehow, you are ashamed of your head!” The women, their heads covered in scarves, giggle and nod in agreement. “I have had breast cancer thrice and didn’t care how my hair looked. Now that it has grown, I have coloured it,” she laughs.

Goenka tells us later that empathy is a big part of being a cancer coach. “You won’t understand the disease unless you go through it yourself,” she says. She adds that patients trust her enough to share their anxieties about their self-image or their marriages.

Training to beat cancer

Bhat prefers that people who train to become cancer coaches, or “sherpas”, as the organization refers to them, should be survivors or caregivers to cancer patients. He talks about the need to have a shared connect, much in the way that support groups exist for rape survivors. “You can’t be a cancer coach if you are uncomfortable with the idea of death. The fear of death looms close to a cancer patient, and cancer coaches need to go with them to these deep and dark places,” he says.

“We call them sherpas because they carry the load, giving patients the strength to head to the summit of this mountain called cancer,” he says. Each of the 13 sherpas at Cancer Awakens attends to an average of five patients a year. Bhat says that since coaching is, in general, a “self-regulated activity”, there isn’t any Indian or international certification yet for it. Cancer Awakens, however, provides them with a certificate.

Bhat explains that the sherpas look at the “non-medical” aspects and have basic knowledge of different kinds of cancers. But they are not to be confused with counsellors. If a patient is facing depression, the cancer coach will help him/her find the right professional.

The need for assisting cancer patients through their treatment has been recognized by the Tata Memorial Centre, where the first batch of “Kevat”, or patient navigators, will graduate in May. Nisha Singh Goel, the coordinator of Kevat, says the name of the programme alludes to the mythological boatman from the Ramayan who helped Lord Ram cross the Ganga. “The patient navigators will ferry patients across troubled waters and are meant to take some weight off medical professionals, who are strapped for time in a place like the Tata Memorial Centre. If patients need to understand what the doctor has advised or what metastasis means or how to arrange for finances, the patient navigator will help them with it,” says Goel.

The year-long programme was initiated in April 2018, with 30 students trained in the know-how to help patients cope. The basic requirement from students is a bachelors’ degree in social work, humanities, psychology or hospital administration, but the programme also values the experiences of those who have been caregivers or have worked with cancer patients.

In Bengaluru, leadership coach Paul George trains patients at an integrative cancer care and rehab centre called CARER, set up in 2016. At the centre, he is among the many specialists—nutritionists, physiotherapists and yoga teachers—who come together to help rehabilitate patients by focusing on food, body and mind. He charges his clients about 500-750 an hour. “With cancer, you enter a new lifestyle. You will reorient your values—you may feel that your family is more important or that you want to learn more about spirituality. There is a new normal. Patients will want to do something else with their lives and it is usually not making more money,” he says. According to George, cancer patients often find themselves in unusual situations—an estranged wife, for instance, may not choose to be the caregiver to her husband. What does the family do in such instances?

Children, on the other hand, may not have the same concerns as adults once they are diagnosed, says George. Bengaluru-based German translator Pavitra Baxi, whose daughter was diagnosed with grade 1 pilocytic astrocytoma in the brain stem in 2015, sought out CARER for physiotherapy, not a coach. Baxi says her daughter, now 11, resumed school, but, like adults, was quite anxious about whether her peers would tease her about her bald head or surgical scars. Baxi is thankful that the school coached students on how to make her daughter feel at home.

George’s mother died in 2014. She was diagnosed with stage 2 uterine cancer and responded well to treatment but her immunity had been severely compromised by chemotherapy. A common cold developed into a severe chest congestion, leading to her demise.

Following her death, George battled depression. It was then that his therapist guided him to approaches such as Neuro-linguistic Programming therapy and transactional analysis, which he now uses to coach cancer patients.

New perspectives

Vishal Rao, head and neck oncology surgeon at Healthcare Global Enterprises Ltd (HCG) in Bengaluru, says a fundamental shift is needed in understanding cancer treatment. It is often described as a “deadly” disease, along with a glossary of terms such as “amputate” and “excision”. “What can we do to change that conversation?” he asks.

“The body’s immunity can tackle, say, a virus, but not something like cancer. So, the question is, how can you wake up your immunity? Next-gen research is going to be dedicated to this,” adds Dr Rao. In 2018, the Nobel prize for medicine was awarded to James Allison of the US and Tasuku Honjo of Japan, for their pioneering research in immunotherapy, which involves firing up the body’s immune system to fight cancer. Their discovery was significant because the human immune system doesn’t target cancerous cells as it would other foreign ones. Allison and Honjo’s research heralded a new generation of immunotherapy drugs and clinical trials.

Dr Rao says there have been abundant studies establishing the link between immunity and cancer, since the 1980s. In 2000, a Stanford study showed that women with advanced breast cancer and higher daytime levels of cortisol were likely to die sooner than patients with normal levels of the hormone. Cortisol is the body’s response to stress, part of its fight-or-flight mechanism. It can weaken the activity of the immune system.

Bhat’s Cancer Awakens works along these lines, in the belief that patients who are less stressed respond better to treatment. Clients have to sign up for a 16-week-long online programme, Thriver. Among other things, the programme focuses on reducing emotional, mental and physical stressors . There is a 30-minute free consultation, following which clients go through an assessment of the quality of their lives, progressing to discovering their life-purpose. There is also a session called “Dialogue with Death”. Bhat says it is preferable for patients to start right from the point of diagnosis but there have been patients who have joined them midway too.

The Thriver programme is delivered in English, and costs80,000 (with an additional 18% GST). Bhat says they have coached 100 patients since their inception in 2010. If the price seems steep, Bhat concedes that his personalized programme is “not meant for the masses”.

Among the sherpas is Anju Kurien, a 54-year-old talent HR for a media group. Kurien was diagnosed with breast cancer in 2011 and sought out Nilima, Bhat’s wife, as her coach. “She just told me one thing,” says Kurien, “that I will be going on a journey of learning.” Through her coaching and treatment, Kurien found that accepting the disease was essential in battling cancer. “If you can’t accept it, you try to control it, and then your resentment grows, bringing down your immunity. That won’t help you in your fight against cancer,” she believes. Kurien went on to train as a sherpa at Cancer Awakens for more than a year.

A cancer coach, however, isn’t for everyone. The Mumbai-based co-founder of a digital ad agency, Shormistha Mukherjee, was diagnosed with breast cancer in 2018 and had to undergo a single mastectomy, four “big” chemo sessions with 21-day gaps, followed by 12 weekly chemo sessions and 20 sessions of radiation . A friend asked the 45-year-old if she wanted to try a cancer coach, but she wasn’t sure about the service. “I went with whatever instinctively helped me,” she says.

Help came in the form of friends who practise alternative healing therapies, a WhatsApp group of breast cancer survivors, and a fellow breast cancer survivor who, she says, accompanied her on long walks, got her literature on the subject and gifted her dark chocolate. “I was convinced that cancer coaching was not for me. One person’s experience in facing cancer is possibly not enough for guiding another,” she says, adding: “Moreover, I never went down the bitter path myself. Cancer is a random lottery in the sky and I got picked. I never asked why.”

[“source=livemint”]