“I used to comb her hair every day. Two months into the treatment the hair fall began. That was the first time I saw her cry since the diagnosis. She had held herself strong; she had two teenage daughters. She couldn’t afford to break down,” says Koyal, 24, the attending house help at that time.
Neena Shah, from Mumbai, is a mother of two daughters and an entrepreneur at heart. She is known for her designing and embroidery work.
She first felt a lump under her left armpit in February 2012. Her first reaction was denial. “After all, cancer is a disease that always occurs to someone else; not you,” says Girish Shah, 53, Neena’s husband, a businessman by profession. Her family insisted on visiting the doctor and after some tests, her breast cancer diagnosis was confirmed. It was at Stage 3 and required immediate attention. Her surgery and treatment were conducted by a renowned oncologist Dr. Amish Dalal at Breach Candy hospital.
The feeling of denial did not fade. She still believed it was just another cold and that it would eventually pass. “I was 43; it is not the age to be sick. It did not sink in immediately,” adds Neena.
Many times, we forget to give credit to the woman of the house. “It was she who always held us together. Now was the time, we had to hold her together,” states Bhavya, 21, Neena’s daughter.
“I loved visiting the temple on days after my chemotherapy treatment. It took my worries and pain away. A lady known to me came up to me and asked, ‘Is that a wig? Do you have cancer?’ I was taken by surprise by the directness of her questions. After that day, I choose to visit the temple precisely at those times when no one I knew would be around,” says Neena.
She adds that she strongly feels that there are some things that one should not to ask when one comes to sympathise or offer help. One should either offer positive examples or it is best to not say anything at all. Neena says. “People started seeing me differently. That was when feelings of anxiety, rage, surprise, doubt, desperateness and fault cropped up.”
Neena underwent surgery 30 days after the diagnosis. “I often found my doctor harsh. Being one of the best surgeons, he was unsympathetic about the situation many a times,” she adds.
“I was around 17 years when she was diagnosed. They broke the news to me two nights before the surgery. The unknown creates fear. It was one of the most confusing stages of my life. I didn’t know whether to stay strong by my mother’s side or take shelter under her love,” says Bhavya, remembering the fateful days.
After surgery, she endured eight chemotherapy sessions. After chemotherapy, the effect of the medication is at the lowest during the first 48 hours. The next 72 to 84 hours are crucial. This is the time when the body experiences extreme internal heat and in Neena’s case hunger. “We have gone on drives looking for food as late as 2 am. These are some moments I still cherish,” states Girish Shah.
Her experience with radiotherapy wasn’t any pleasant either. “I would need my daughter or sister to walk me to the restroom. It is a type of weakness you have never felt before,” she says.
Diet becomes an important part during the treatment. She consulted a nutritionist, Jahangir Palkhiwala. Wheat was excluded from Neena’s diet, while leafy vegetables, brown rice, wheat grass juice, fruits, and different kinds of detox regimes were included in her diet. Neena tries her best to follow the diet till date.
“I didn’t know how to cook anything. I learnt how to make breakfast. Staying home was satisfying. I have woken up nights to see her sleep peaceful. Seeing her sleep, I slept too with a smile on my face,” says Bhavya.
She was declared cured in July, 2013. “I had tears of happiness. We cried together as a family; we were so happy. But that was not the end,” adds Girish.
Medicines become a daily routine. Checkups once every six months became a must. The fear of a relapse can be nightmarish. The disease not only changes you physically but mentally as well. “She was a new person now and we had to change with that,” says Girish. “I lost my physical strength to work. My temperament changed. I found myself transforming into an angry woman, who had aged before time,” says Neena.
“Even today, when I look back to that time in my life, I feel a void. My mother sometimes forgets the pain she endured. But the sight of her struggling to get up to do the most normal of tasks is something I can never forget,” says Bhavya.
“Infertility, loss of taste, loss of hair, and loss of nails, are a few side effects of chemotherapy. A few we recover from and a few that are permanent. These are the side effects we can see visibly; there are some that are never addressed aloud,” says Sneha Sanghvi, Neena’s sister.
In April 2016, Neena noticed a sudden swelling in her arm. After consulting the general physician and a number of oncologists, she was diagnosed with lymphedema. The process of diagnosis was long and took approximately 3 months, due to the lack of knowledge of this disease. This resulted in worsening of her condition. It is a common side effect in the patients that undergo radiation therapy. 6 out of 10 people suffer from it. It may occur at any point varying from 6 months to 15 years after being cured.
A person suffering from lymphedema experiences swelling in the arms or the limbs near the affected area. The available treatment options are multi-layered bandaging and manual lymphatic drainage. Counselling services are also available at the Tata Memorial Centre, Parel. Unfortunately, this disease does not have a cure. With the help of the treatments, the swelling can be reduced and can be brought under control but it has to be maintained. It becomes a part of your life.
Cancer is not uncommon. It is a turning point in a patient and his or her family’s life – a phase where time seems to stand still. Living with cancer is a big challenge, but it certainly doesn’t mean the end of the world. The smile on Neena’s face doesn’t give away the pain she has and is still enduring. But she battles on.
Kavya Shah is a handpicked product of the Bayside Pathfinder where we empower the young and the young at heart with the power of storytelling. To become a part of our extended family of unique contributors, call up Prem Madnani at +91 9892913788 or email him on [email protected].