You need something called "Saman Anubuthi" which means empathy....

CSR Times: How does running for Pinkathon motivate you?

Harshula: Actually I was presented with this opportunity by Pinkathon team and I had liked it because they had chosen a common person over a celebrity. They could have easily brought a celebrity on board to endorse it. But I guess the idea was to reach out to common women. Research shows that psychological and physical benefits of exercise are very positive. It definitely boosts ones immune system and moreover I enjoy it.

CSR Times: Can you tell us about your journey? How you got detected and how was your health during that time? Also how did you recover?

Harshula: Believe me nothing can prepare you for the shock of your life when you hear the words – you have cancer. Early detection of any cancer is pivotal in ensuring the number of cancer survivors continues to increase. The earlier a cancer is diagnosed the greater the chance it can be treated successfully. Breast cancer is definitely completely curable if detected early. However, if detected late, you may have to go undergo mastectomy. It causes severe emotional trauma as it associated with womanhood.

Fortunately for me, it got detected at a very early stage. We undergo annual medical checkups. Before the detection of cancer, during the 3 years of annual check-ups there was no indication of a lump in the mammography. Mammography is a painful test. Initially the doctors did not suggest any further tests. They said it was not required. But then I detected a pea sized lump, on self-examination, so I insisted and underwent a sono-mammography and that was how the lump was detected. A year’s treatment was recommended because I was detected with an aggressive type of breast cancer HER2 positive I went to Kokilaben Ambani Hospital for treatment since it has the best oncologist, Dr Mandar Nadkarni. I also took a second opinion from doctors at Tata hospital before proceeding.

The HER2 cancer is treated with a medicine called Herceptin, which has side effects on the heart. So we were in two minds whether to go for the treatment or no? It was a difficult choice and I had to decide, whether to live 20 years with a healthy heart or live 40 years with a weak heart. Since my kids were very young, we decided to opt for the latter. My son was in 3rd grade and my daughter was in 7th grade. We decided to go for one year treatment. It was difficult, but I had great family support. Basically I didn’t shy away from acknowledging it and accepted it openly. If you have a good support system things are easier to manage. I had delegated most of my work to my friends, who were more than willing to help me out. We had planned several things, such as managing day to day studies of children, other school related activities and house maids well in advance before going in for the treatment. That made my life much easier.

I didn’t have the time or luxury to ponder, and didn’t want to ask questions like why me? I had a very healthy lifestyle, so when I was diagnosed with cancer, it was a matter of shock for everybody. I actually accepted it with a smile, because a frown would not change things.

CSR Times: Are you expected to take it with a smile?

Harshula: You are not expected to smile but a frown will not change things. Frowning will not change the fact that I have to undergo one year treatment and it’s not an easy treatment. I think we are fortunate to be born in this era because the medicines have improved and the side effects are much less now. The treatment is controlled and manageable and the side effects have also mellowed down considerably. I also think you get the best treatment in India. Herceptin was followed with chemotherapy and radiation and again continues with Herceptin. Then I went in for the regular chemo sessions. Herceptin was once every week and then I went in for the radiation. It was really bad because it almost gave me third degree burns. It was really very painful.

CSR Times: Have you recovered completely now?

Harshula: Yes of course. Mine was detected in December 2011 and I completed my treatment by December 2012. I will have to continue taking Tamoxifen everyday for 5 years. Besides that a checkup every 6 months. That’s it. It’s not a big deal. During the treatment my life didn’t change one bit- I continued to do whatever I did. I travelled abroad, attended my children’s annual days, and also attended their teachers meeting. May be just couple of days after the chemotherapy to give time for the body to recuperate.

CSR Times: So even during the treatment you continued with a very normal life?

Harshula: As I mentioned earlier, my life didn’t change at all. I continued doing what I did or else people think that life stops for cancer patients. Infact we went to Turkey as well. During the holidays there I was absolutely fine. After I came back from Turkey, the next morning I realized that there is no hair on my eye brows. It’s very traumatic for a lady to find out that there is no hair, and no eye brows. People would give me weird looks but I didn’t care. I mean you have to be mentally strong and have a positive attitude. You also need a good support system otherwise it doesn’t work.

CSR Times: Something that I would like to know is, how has it changed you personally? Also now that you have recovered and won your battle against cancer is there something you have discovered in yourself that wasn’t there before?

Harshula: I have stopped taking things for granted now and I have learned to prioritize my things in life. I was actually a working professional and worked in the software industry for 11 years. So during that period work was my priority, then after my second child was born, I chose to become a home maker. Then my husband and my kids became my priorities and my life revolved around them. I never gave myself priority and it struck me, that unless you are hale and hearty you can’t be there for your family. So I started spending some quality time on myself, without neglecting my other responsibilities.

My treatment got over in December and in January I started my routine chores like dropping my daughter to school, or cooking. But I did not exercise, and it was only after a few months, during a routine checkup when my doctor suggested that I need to lose weight. I had put on around 18 kgs because of the side effects of the medicines. He said cancer cells feed on fat cells so I did not want to invite anymore trouble. I didn’t want my family to go through the trauma again. That is when I took up walking along with a little diet. My diet plans was not really very rigid and included low carbs and low fats. Since everything was cooked at home I made sure it was healthy and nutritious. So I learnt to prioritize my life.

I have met so many patients, talked to them and realized that the society has a very dogmatic view. So many patients had not even informed their in- laws or other family members, for the fear of social stigma.

CSR Times: So do you think speaking to cancer patients creates an impact?

Harshula: Yes, especially when people from similar backgrounds speak to them. They can’t relate to, may be, a Manisha Koirala because that creates a different impression. They can relate to a middle class lady talking to them and sharing her experiences.. I had taken pictures of all the stages that I had gone through during cancer. I share these pictures with a bald head, no eyebrows with the patient, so they were mentally prepared. I would actually advice all those who had been detected with cancer to be mentally strong while going for treatments. Remember it’s just a passing phase. If you are prepared mentally it doesn’t come in as a rude shock.

CSR Times: So should people be constantly happy even after being diagnosed with cancer?

Harshula: No, that is not what I meant. The problem is people think that once you have been diagnosed with cancer, your life is over. They take it for granted and believe that death is inevitable .People usually break down when they first hear about it, especially in our country.

When my husband went to pick up my report, the health care provider simply took the report and said something was wrong. He was obviously not trained to handle cases. They had written Carcinoma, a type of cancer on the file. But when it is your wife or a family member, you don’t want to accept it easily. He asked, can I meet the doctor to get it confirmed. The guy at the counter was not trained properly and he took the report from my husband and asked rudely, can’t you read? It is clearly written cancer on the file. If he would have been a little sensitive about it, it would help.

I can get a lot of information from the internet and the doctors. When you tell people you get sympathy and that is not required. You need something called saman anubuthi which means empathy. Let me explain what saman anubuthi is. When a person has gone through similar experiences, it is call saman anubuthi. So only when people like us come out and talk, it is likely to have more impact because the other person realizes what the speaker has gone through. They know exactly what I am feeling. On the other hand when a person has not been through any death challenging disease it is more of sympathy and it sometimes puts you off.

CSR Times: According to you, why do you think people display such behavior?

Harshula: I think people feel that they are lending moral support which is not the case. They do it with good intentions without realizing that it might have a negative effect on the person as he is in a different frame of mind. In some strange ways, I think cancer is better than diabetes and heart illnesses. If detected early it does not stay with you forever. It can be treated; it is completely curable if detected early. I am really stressing on the words “early detection” because I don’t want to be misunderstood.

CSR Times: So the need of the hour is to create awareness, especially on the importance of regular annual checkups, so as to detect the disease in the early stages and start treatment to get completely cured. Is that correct?

Harshula: I am here today because mine got detected early, and I am very particular about my annual checkups. You had asked me a question earlier about what has changed before and after the disease. Now every time I meet my friends I request and appeal them to undertake their annual checkups very seriously and religiously. If you are married or if you have a partner then, I recommend that you gift each other an annual checkup on your anniversary or some other special day. If you are single then gift yourself a medical checkup on your birthday.

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