Surviving cancer and towards a life less scarred

Lack of support groups, cost of cancer care a big burden on patients

Salil Jain

Seven years ago, Salil Jain, an industrialist and an educationist, had to welcome an unbidden visitor to his home – in the form of rectum cancer.

Caught in a cataclysmic situation, he went helter-skelter looking for the right treatment. Salil, who had earlier lost his sister to breast cancer due to inadequate treatment, didn’t want the mistake to recur.

In the days that followed, he discovered the best way forward for him was to go for robotic surgery in a Bengaluru hospital.

Now, in the best of health, he has dedicated his life to help and guide cancer patients, survivors and their families.

Cancer brings along not just the disease itself but issues that are emotional, psychosocial, financial and the paraphernalia.

Patients are caught in a whirlpool of emotions and confusion.

“First treatment is the most important treatment in cancer. Cancer does not give you a second chance so one has to get it right," says Salil.

"Unfortunately, most often, patients and their families do not get the right information on cancer and its treatment. There is lots to know apart from medical treatment," he says.

"Patients also hesitate to ask doctors all their questions and doctors don’t have the time to keep clarifying all doubts of all patients and rightly so, because their calibre and time must be used for treating,” adds Salil.

He points out that cancer survivorship helps bridge this gap and therefore is a must for all patients.

He thus launched the organisation ‘The Survivors’ to address these issues.

Three months back, Salil, along with Manipal Hospitals, Bengaluru initiated Cancer Survivorship Programme under 'We Can' – the cancer support group at the hospital - to make cancer journey and survivorship much easier.

"The Cancer Survivorship Programme handholds patients helping them bounce back to life," informs Salil.

Swati Suramya is a 36-year-old breast cancer survivor and mother of a five-year-old.

Recollecting what she went through at the time of her diagnosis, she says, “It came out of the blue. I had always lived a healthy lifestyle and couldn’t understand what this was all about. My hands went numb. I did shed a few tears, but that was about it.”

“My family was very strong and supported me in every way. When my treatment was halfway through, I started blogging. It helped me unburden myself,’’ recollects Swati, a business content writer and blogger.

Information is the first step forward but sadly a lot of people don’t know what exactly chemotherapy or radiation is.

“If you are diagnosed, see an oncologist. Don’t go to any other doctor. Don’t go for alternative therapies. Only an oncologist knows what is good for you,” advises Swati.

“One of the doctors who treated me, Dr Shabber Zaveri, told me something very important -- ‘Don’t Google your illness, don’t discuss it with friends, relatives or neighbours till the treatment is over and till I tell you to',” she says.

"Dr Zaveri got me in touch with his patients. They were in the same age group as me and that was such an amazing thing to do,” she recollects.

Salil informs that a patient’s health needs to be checked for possible side-effects post-treatment and needs to be attended to by specialists.

"A healthy lifestyle needs to be followed too. We give information about all this,” he says.

There are also situations when patients are relaxed and fail to go for review sessions.

“Most cancer patients do not go for their follow-up check-ups after a year. When more vigilance is required, they are caught unawares in cases of recurrence,” Salil says.

Swati also emphasises the need to be mentally strong at every step.

“You have to be mentally tough and your family support is very important for you to be mentally tough,” she says.

Yet another vital aspect is the support that needs to be given to the caregiver.

“Caregivers too need support as they suffer burnout, physically and emotionally,” says Salil.

Swati points out that there is a lack of good support groups in India for cancer survivors. “Nobody else can understand what cancer survivors go through other than the survivors themselves,” she says.

For the elderly, there are emotional hurdles which stop them from taking treatment at an early stage.

"Often elderly patients do not want to tell their children about their symptoms as they worry that they would be a burden on them,'' says a surgical oncologist.

“But it’s payback time and they need to support their parents in difficult times,” he adds.

On all counts, the cost of cancer treatment is also a huge burden on the patient and family.

“Till the age of 57, when I got cancer, I didn’t have medical insurance. I used to think it is a waste of money,” says Salil.

“Not many know that cancer treatment is so expensive, which is why medical insurance is a must,” he adds.