Leanne Pero is tackling the taboos around cancer in London’s BAME communities by giving a platform to cancer patients and survivors to share their stories. After experiencing loneliness during her cancer treatment, cancer survivor Leanne Pero has built a community of support for Black Asian and Minority Ethnic (BAME) cancer patients.
“When I got diagnosed with breast cancer, I went into hiding and felt ashamed of being 30 and having cancer,” Leanne said.
Before her diagnosis, people told her she had better chances of winning the lottery than getting cancer. When she learned about her breast cancer, one of her friends attributes her diagnosis to the fact that she likes to drink alcohol once in a while. Such reaction revealed the myths around this disease.
Leanne’s diagnosis happened the year her mother’s breast cancer came back. If she was aware of the treatment, she talked about it “as the worst moment of her life.” Learning that her cancer was treatable took her out of a spiral of guilt and gave her the strength to fight.
Her treatment included chemotherapy, which often leads to hair loss. As a way to take control of her disease, she shaved her head as soon as the first strand of hair fell: “The morning after, I took a picture of me, and I thought that it wasn’t that bad. More importantly, I had done this to myself [instead of my cancer].”
When the cancer disappeared, she decided to create something positive out of her recovery by launching the photo exhibition “Black Women Rising: The Untold Cancer Stories” to raise cancer awareness among the BAME community.
The photo exhibition took place from 30 August and 1 September and featured the scars of 14 ex-cancer patients from the BAME community.
The lack of support during her remission is what made Leanne start a BAME cancer patients’ support group, and later the photo exhibition. She talked about the difficulties of going through cancer treatment but also finding her life after cancer.
“[I was] thankful for getting my life back but what life? It’s not the same,” Leanne said. “I had to rediscover myself, my mind, my body, my soul, everything.”
As a way to deal with her self-discovery, Leanne started a blog to talk about life during her cancer remission. Many women related to Leanne’s story and contacted her. From there, she launched a support group for BAME cancer patients.
This second edition of Black Women Rising’s exhibition introduced new voices through a panel discussion of BAME cancer survivors. One of them was Charlie, the only man willing to speak about his cancer at the panel, was diagnosed with testicular cancer three years ago.
“As a man, you expect to deal with everything, but with cancer, you can’t,” Charlie said. “It was threatening and it scared me.”
Charlie went through six months of intense chemotherapy and had his tumour removed. He spoke about the lack of men’s stories going through cancer: he struggled with the emotional side of recovery and had to seek counselling.
A report from the Macmillan Cancer Support showed that “cancer awareness and help-seeking behaviours among BME groups are low across all minority ethnic groups”.
“When I was diagnosed with cancer, my mum did not even understand what cancer was,” said Saima Thompson, a panellist from Pakistani origin. She documented her stage 4 lung cancer story on her blog Cancer & Curry.
Saima also spoke about loneliness from only seeing white women speaking about cancer. She was very happy to read Leanne’s blog about her cancer journey, the shame and myths present in BAME communities.
Leanne has met women who were banned from their families because they thought cancer was transmissible. She also lost friends after telling them about her diagnosis.
“I met so many people through Leanne’s community, it’s a nod of solidarity,” Saima added. “No one should feel alone on this journey, even if you are a person of colour.”
Shevelle Copeland-Kelly, a member of Leanne’s support group was diagnosed with triple-negative breast cancer a month ago. She’s 28 years old. Because of her young age, every health professional had told her that she was too young to have breast cancer. At the hospital, health consultants did not even want to give her a biopsy at first. When hearing about her results, she walked out of the doctor’s room.
“I felt like the whole world was closing on me. For a young girl like me, it was really hard.”
She described learning about Black Women Rising and meeting Leanne as “a life-changing experience.” Shevelle said she found hope in Leanne’s Instagram story, which shows her journey through her cancer treatment and remission.
“It gives me goose-bumps to see that so many women walking with their cancer and mental scars because it’s not just cancer, it’s a whole mental journey,” Shevelle said.
Shevelle praised Leanne’s positive attitude towards cancer and her ambition to break taboos and stigmas around cancer.
The failure of the health system to cater to BAME patients is also an issue in the US. Last November, Human Right Watch reported the death of +4,000 US women from cervical cancer: one in five women identified as Black.
Based on their share of the general population, it means that “Black women dying from cervical cancer is 1.29 times higher: “When Black women die from the disease at much higher rates than white women, larger patterns of racial disparity and discrimination are also at play,” said Kelly Flannery, NYU fellow at Human Rights Watch.
In the UK, the 2015 report on “Cancer Statistics” from the National Cancer Intelligence Network (NCIN) acknowledges that “ethnicity has historically been poorly recorded for cancer registrations.” Can you be more specific about this number? More statistics on this issue, in the UK too, would be the finishing touch
The panel discussion ended with a call for more understanding in BAME patient treatments, the translation of booklets in languages other than English, and giving personalised wigs.
“We need to be more represented because cancer does not exclude,” said Leanne. “I don’t want anybody to die or go through cancer alone.”
