In October 2020, at the height of the pandemic, in the face of lockdowns and homeschooling, Gazal Kamal, a Palestinian mother of three young girls, began to feel a dull ache under her arm. She also noticed that one of her nipples had become inverted.
But, despite her husband’s insistence, she was in no rush to schedule a mammogram. She was put off by having to get a referral. Kamal had regular ultrasounds and apart from a few benign cysts they always came back clear. A radio advertisement for a health check prompted her to take action. This time, however, scans led to a biopsy and she was diagnosed with stage three breast cancer, six months after her 40th birthday.
It was the beginning of a long and exhausting road to recovery. And she only had a week to decide on a course of action.
“’Start the treatment.’ That’s all I was hearing,” Kamal says of the first few days after his diagnosis. “But what are you doing? Are you following the recommended protocol? Do you want to have chemo? Are you happy with your doctor? What does your insurance cover? I had so many questions, and the hardest thing at the start was to navigate the unknown when I needed to make decisions yesterday.
She spoke to a few friends and acquaintances with similar diagnoses, but struggled to find anyone in the same boat. “I wanted information,” she said. “I had no one to exchange ideas. A person I knew had breast cancer 15 years ago. The other chose a more natural route. I wanted to know what my specific procedures would be.
I’d be online in the middle of the night trying to find anything I could. I found some great apps, but that wasn’t my community. They were in the United States and everyone was in a different state at a different time. It was frustrating.
This is how the idea of the Breast Cancer Club was born. The mobile app, which Kamal fittingly launched this month – which marks Breast Cancer Awareness Month – offers various forums divided into different stages of the breast cancer journey, including newly diagnosed alternative therapies. and family support. This is a local platform to connect with other women in the UAE and explore treatment options based on first-hand experiences. It’s an app that Kamal thinks she would have taken advantage of on her own.
Testing positive for the cancer gene, Kamal opted for chemotherapy in Dubai, followed by a double mastectomy and the removal of her ovaries in New York. The last step would be radiotherapy, also in Dubai.
“I didn’t ask the right questions,” she says. “I didn’t even know what the questions were. If you have an app where people say, “On your first date, this is what you should ask for,” that would be really helpful. I wish someone had said to me, like, “For your PET scan, they inject you with a radioactive dye, so maybe you could take an Epsom salt bath afterwards, so you can detox.”
The only advice Kamal would give? “Get checked out, don’t be like me where time flies by and you don’t want to do a pap smear or ultrasound, go ahead and do it.”
Breast cancer is the most commonly diagnosed cancer in the UAE. It is also the most widespread in the world. Kamal believes that, given these statistics, the right of access to the right information should be consolidated and easily available.
“You don’t get a booklet,” she said. “You get nothing. It’s like welcome to your new world, now go find it. I do not like it. I don’t understand why we have to struggle because so many women are going through this. It should be much clearer.
Kamal also felt inspired by the unwavering support of her friends and family, who were there for her at a time when most people were self-isolating in response to Covid-19. With the launch of Breast Cancer Club, a self-funded app, she feels able to restore that sense of community and, at the same time, break down cultural taboos associated with the disease.
“I can’t tell you how many people have messaged with their own story. I want to help people and spread the word. I don’t want it to be a secret. I don’t need to hide and feel sorry for myself.
“My treatment was successful but the road is long. I am still struggling with the physical after effects of the surgery and the side effects of the medications. Things are more difficult, but I enjoy life more, I know where I’m going and I’m in a better situation than before cancer.
“Creating the app has been a very cathartic experience. My life has recently been defined by breast cancer, but I’m tired of being locked up. I don’t want that to define me. I want to define it.
And with the launch of the Breast Cancer Club app, it’s off to a good start.
Updated: October 27, 2022, 04:12