It was the stuff of nightmares. Thirty-five-year-old Bhawna, with a minimal family history of cancer, went in for a regular checkup. Soon, the mother of two young kids who had never had a mammogram went in for a quick, precautionary mammogram. Five hours later, with additional tests, an ultrasound and a biopsy, she was sent home with instructions to bring a companion when she returned for her results.
That was the moment she realized that something was truly wrong. Bhawna was diagnosed with breast cancer.
“It wasn’t one tumor, it was multiple tumors,” she remembers. Those tumors would result in a mastectomy, chemo and radiation. She was fortunate that it was caught early – and remains appreciative of the aggressive “let’s overtreat rather than under treat,” philosophy of her NHS doctors in London.
While hearing the words “you have cancer” is never easy, patients and caregivers often experience their “moment of crisis” at different points of their cancer journey. For Bhawna, that moment came after her successful surgery, as she was preparing for chemo.
“Coming home felt like the beginning of my ‘real’ cancer experience. I couldn’t lift my kids up and they didn’t know why. My fear was getting stronger as the time for chemo got closer.”
She bought a wig, but soon ditched it for a large collection of hats to mask the hair she’d had to shave after it began falling out in clumps. “I’d never worn hats before, but they,” she trails off. “They weren’t bad.” Chemo really made her feel sick but she was going to get through this as all this time her focus was that she had to get better for her kids and her family.
Last summer, we worked with Bhawna and her NICE (Network Indian Cultural Exchange Employee Resource Group) colleagues at Novartis to present a workshop on providing culturally competent cancer care for Asian Americans. As part of that event, we discussed the culture of privacy that is often important to patients of Indian backgrounds. Deciding what, if anything, you want to disclose about your cancer journey is a difficult choice for most patients. For many in the Indian community, sharing personal information like a cancer diagnosis often has an additional layer of nuance and hesitation.
Bhawna appreciated that cultural norm but decided to bring her family into the conversation.
“I shared it with my immediate family and in-laws. I shared, but not broadly. Some of them shared with our extended circles, but I limited the number of people I told,” she recalls. “I was lucky to have my aunt who is also a doctor. I could discuss anything clinical about the treatment with her.”
Her sharing allowed the family to come together in support. Her father travelled from India to be with her during surgery and her beloved aunt came from Chicago to make the transition home after surgery a bit easier. Her sister flew in from India when her chemo began and her sister in law went with her to get her head shaved. Her husband was “super-supportive” throughout the entire process. “We grew as a couple. We figured out how to work even more as a team.”
Friends and colleagues rallied in practical, helpful ways. “My work was wonderful. I took an extended leave and they were really very supportive. Friends would come and take me out, they’d pick up the kids. My Nanny would cook for my two little kids on the days I had chemo. A lot of times, they’d drag me out to do non-cancer related things. That normalcy was so meaningful.”
Telling family and close friends was one thing. The harder decision was deciding what to tell her children, who were 2 and 5 at the time. “Having kids was the hardest part – and also part of what got me through.” It was a balancing act of age-appropriate open communication and protecting them.
“I shared what I was going through, but didn’t mention my diagnosis,” she recalls. “I told them that I was sick and that I had to take strong medicine that might make Mommy’s hair fall. I didn’t want to scare them.” She recalls the pain of keeping her five year old away from the hospital while she was recovering.
“I didn’t want him to see all of my pipes and tubes.”
She encourages patients to be aware of their limitations and realistic with the goals they set for themselves by sharing her own experience. “I was very keen to get back to work. The UK has more flexible policies about leave and medical time off, but I decided it was time to get back.” The return to routine was welcome, but even with flexibility and reduced hours, the fatigue and the break from the “what’s next?” of active treatment was overwhelming.
Counseling sessions and continued support from her husband and community were helpful as she adjusted back to her new normal. She found inspiration in the book “Dying to be Me,” a memoir by Anita Moorjani. She worked hard to associate her identity with more than her career.
Bhawna is appreciative of the new perspective she’s gained. “A diagnosis like this is life-changing. It makes you stop and consider what matters in the grand scheme of things.”