"It’s still a taboo subject, and we being a very religious country attribute cancer to 'bad karma'." - Rahul Yadav (in pic)
Talking about cancer can be hard. But it is always better to start, not just talking about the disease and its symptoms but also about how it affects people, both those suffering from the disease and those who have to watch their loved ones suffer.
The vice president of a leading non-profit organisation on prostate cancer in the US recently mentioned how important conversation was for a cancer patient and family. Conversations with near and dear ones, extended family and friends would impart the confidence and optimism which is a pre-requisite when the body is preparing to fight cancer.
Cancer patients and their families have to be equipped for a long haul; as one of my very close friends once said, before I lost him to cancer, “When you are diagnosed with cancer, it is not the end of the world. It is just the new normal.”
Join the conversation
Celebrity advocates like Manisha Koirala, Lisa Ray, Yuvraj Singh and more recently Emraan Hashmi have brought cancer from discussions behind closed doors and hospital corridors to living rooms and coffee tables. This is certainly a big step in India, where people share their joys but rarely their medical problems. It is no surprise that cancer advocacy is almost non-existent or maybe in its nascent stages in India. Support groups are unheard of and a newly diagnosed patient may have to look at western counterparts for advice and discussions.
As Rahul Yadav, multiple myeloma survivor and founder of the first cancer group on Facebook specifically for cancer patients in India, says, “When I was detected with multiple myeloma in August 2013 at the age of 28, I was in a state of shock and denial. I had never heard of multiple myeloma and had no clue as to what it was and what it meant. I immediately started looking for support online and offline. I could not find anything in India directly. I found a lot of support groups in the west and realised that they are extremely helpful both in terms of support and informational guidance.”
Rahul went on to start a Facebook group called Yoddhas-Indians Fighting Against Cancer which now has 11,000 members including doctors, patients and caregivers who help each other and are one big family. The group's effort was recently recognised by UNESCO.
Breaking the silence around cancer in India is difficult. “It’s still a taboo subject, and we being a very religious country attribute cancer to 'bad karma'," says Rahul, about the stigma attached to cancer. "People in India don’t even tell their family members sometimes. Strangely, there is also a 'stay away from cancer' thought process! Some people think that it is a communicable disease and so just don’t want any association with a cancer patient. Even those who want to be supportive don’t know much about the condition and their limited knowledge is of little help.”
Talking about cancer should not be limited to a known set of people, and this is where cancer survivors and caregivers can help others in a similar situation. I work with a lot of amazing people who are cancer advocates and have turned adversity into opportunity, an opportunity to educate and share their knowledge and experience with others in a similar situation.
Benefits of starting a cancer conversation
If you are a care giver, understanding what your friend or relative is facing will help you encourage them to talk. Supporting a person with cancer is both rewarding and demanding. It can be hard for you, too, but you are not alone.
“The most difficult conversation I have had is telling my 10-year-old that I have cancer,” says Mrinalini, a leukaemia survivor. “But as a parent, you have to empower your child with the right information about your condition.”
Being honest and specific and using simple language is a good approach. Tell children the name of the cancer, where it is in your body and how it will be treated. Reassure them that nothing they did caused the cancer and there will always be someone to look after them. Asking open questions can encourage children to express their feelings and guide the conversation.
You may think it is not worthwhile or you may worry about making someone feel uncomfortable. But talking benefits you. Putting your fears or concerns into words can help you, and others, make sense of difficult situations. You may also want to enjoy times when you don’t talk about the cancer. Don’t be afraid to tell people when you would prefer to talk about other things.
Some people don’t want to share their feelings about cancer or its treatment. Be open with your friends and family about when it is hard to talk.
Priya V. Menon is scientific media editor at TrialX/Applied Informatics Inc. She manages and hosts CureTalks, an international online radio talk show on cancer research and health care.