Breast cancer campaigner urges survivors to share their stories, spread hope
Bengaluru: Meet Swati Surmaya, a writer from Bengaluru, who is on a mission to break the jinx and blind theories associated with breast cancer in society.
“Every survivor should come forward and tell their story and inspire others with that positivity,” she says.
At 35, Swati was diagnosed with stage 2 cancer. She completed her treatment following multiple surgeries, received treatment for 13 months until March 2021, and triumphed over the dreaded disease.
She discovered a lump in her breast in December 2018. In February 2019, the biopsy confirmed that the lump in her breast was cancer. The final stage of the disease was stage 2B. She underwent adjuvant chemotherapy first, followed by treatment and radiation. At present, she is on regular follow-up, and so far, she is disease-free and getting on with her normal life.
Swati told IANS that many people cannot withstand the intense treatment. Once you are lucky enough to withstand and survive, these kinds of stories need to come out, she adds.
“That is why I blog, speak, and write about it,” she says.
“We are always involved in shaming the victim.”
People often say, “She must have done something wrong. Oh, she must have done something wrong.”
“Breast cancer is associated with the use of hormone replacement therapy or contraceptives. These are risk factors.”
Visitors would easily comment, “She must have been planning for late pregnancy and taking contraceptives, that’s why she has got it.”
“You don’t know my profile; you don’t know that I ever did any of that. You can’t be ashamed. Blaming someone, trying to attribute a reason to cancer, is not helpful,” she says.
According to Swati, cancer is unfortunately immediately associated with death in India due to how it is portrayed in our movies, popular culture and media.
“People who are not medically aware think cancer means death.”
“We have to stop that perception, and treatment is available in India.”
“The quality and treatment as per international protocol are available in India. The first thing I want to dispel the myth is cancer does not mean death. It also means that you can get treatment and lead a full and fulfilling life later after you recover,” she says.
“You don’t have to suffer and be a victim and spend your life. That is why I put myself out there so that people can also see there are success stories. It’s not like everything is bad about cancer. It gave me a chance to re-look at my life and reboot my life like a fresh start, focusing on what are the right priorities in life — focusing on myself, my family, my mental, physical and emotional well-being,” she adds.
“The kind of care I take nowadays is not what I used to do earlier. It gave me a fresh perspective on life. It also taught me self-acceptance. You accept things as they are, and you learn to live with it and make the most of it. That is why I always put myself out there so that people can see that it’s not all bad. Cancer is not all that bad that happens,” she says.
“Many people in India are scared to say the word ‘cancer’.”
They will say, “That thing happened to that person.”
“They will not say cancer. There is also the other side to it where people are recovering. Only because of awareness, people are getting detected early,” Swati says.
“Early detection is very important, and it gives you time and more options for treatment. If you live in isolation and have a lump and keep hiding it, as many elderly women I heard doing it, they hide for years and years. They don’t tell their husbands, sons or daughters,” she opines.
“When it is too late and they start showing severe symptoms, that’s when family notice and take them to the doctors. They don’t want to see a doctor. That’s where I want to remove all the taboos and say it does not mean the end of life for you. Be aware of yourself, be aware of your body and changes in your body. Go for tests, and treatment, and you will come back a better person,” she advises.
“Once you survive, it gives you a fresh perspective on life. You don’t take things for granted, and you thank your god, whichever you believe in, every day. You got a blessing that you are now alive, afford the treatment, and withstand the treatment,” she says.
“People come to meet you not because they really have empathy for you but they think “log kya kahenge” (what will people think) if I don’t go and meet the person. They are there to make the attendance. They are not there to really feel what you are going through. Not many can feel it. If you have not undergone it, you don’t feel it.”
“Let the person be, and let the person be in his or her journey. All you can do is say, “I am here if you need me.”
This is what friends and well-wishers can do; they can assure you, “I am here if you need me for any kind of support — physical, in terms of your presence, taking care of other responsibilities.”
“If they can do those things, you can focus on yourself.”
“But going and crying, making the other person cry, saying insensitive things like, “What did you do to get this cancer?” Nobody genuinely tries to get cancer,” she says with concern.
“I was somebody who is from the lowest strata. I was a non-smoker, not overweight, got married and had a baby at the right time, no age factor, and no alcoholism. No one in my family ever smoked or took alcohol. I don’t have a history of the disease in the family,” Swati added.
“On many occasions, women will not be aware of what their normal bodies are. They are used to hiding their bodies. It’s a cultural thing; they don’t examine; we don’t allow doctors to examine the bodies. That is why a lot of people don’t go for a diagnosis in breast cancer cases,” she says.
“It’s a medical necessity. Go for it like a CT scan or X-ray. Just because it’s a female thing, you can’t be conscious and not go for the treatment. It is more destructive. You owe it to your family. If you don’t pull through the cancer, your children will live with regret their whole life, and the family members,” Swati advises.
You have to come forward and tell it, and only then will they understand, she adds.
“Manipal is a really good team, and they have the protocol that they have international standards. A lot of empathy came from Shabber Zaveri, Chairman HOD and Consultant — Surgical Oncology, Manipal Hospital, Old Airport Road, Bengaluru, and Amit Rauthan, HOD and Consultant — Medical Oncology. An extremely sensitive and supportive team, and they really invested in your well-being. You feel that they want you to get better. They will never belittle you. They will empower you with information.”
“The most important thing in treatment is the doctor-patient relationship. Because it is a long-drawn one, it’s not a one-day surgery, it takes years. In my case, it was 13 months. You can shop around for a medical opinion. But finding a doctor you trust and trust unconditionally is crucial. That is the relationship I had with Shabber Zaveri. Even now, first I will go to him. Even I had suicidal thoughts. I didn’t speak to anyone; I spoke to him. After comforting, Zaveri shared recovered patients’ numbers,” Swati says.
“People who have recovered don’t want to come out and talk. They don’t want to relive the trauma, but people will understand if you speak. You find only negative stories about breast cancer in the media. There are no positive stories.”
“That is why I am here to share my story,” she says.
