Dealing with a life-changing diagnosis, like breast cancer, can be a lonely place. For Leanne Pero, just 30 when she was diagnosed, facing the disease as a young black woman felt immensely isolating.

“There was a support group at the hospital and I went along. There were about 20 people in the room, but I think I only ever saw one other black woman,” recalls Pero, who is now 35 and has gone on to found Black Women Rising a project that aims to raise more cancer awareness within the black community.

“I also remember going in and somebody asking me if I was there to support my mum. I said, ‘No, I’ve got cancer’, and she was really shocked because I looked too young to be there,” she reflects.

Cancer does not start and end with hospital visits – it can turn lives upside down and have huge emotional impact. Access to support can make a world of difference, but Pero quickly realised there was a big disconnect between what was available, and what she needed as a young woman from the BAME community. Plus, she says “massive stigma” around cancer in her community added to the challenges.

Pero is now on a mission to change these things. In 2017, she started Black Women Rising, and last October launched an accompanying annual magazine. With the pandemic having an ongoing impact on cancer services and leaving those going through it more isolated than ever, she is keen to spread the word.

Here, London-based Pero tells us more…

The journey doesn’t end with the ‘all clear’

Cancer meant eight rounds of chemo, a double mastectomy and reconstructive surgery for Pero – a gruelling slog. Yet the hardest challenges were the psychological and emotional ones, which certainly didn’t end once she was cancer-free.

“When I was given the all clear, it was not as glamorous as it sounds. Don’t get me wrong, I was very thankful for my life, but at the same time you’re dealing with so much post-trauma,” says Pero. “For me, being given the all clear was really the time where I felt, ‘Wow, this has all happened to me’.

“I really struggled afterwards. I’d lost my identity and didn’t know who I was any more, there’d been so much change. I didn’t like the same things as before, my thoughts and feelings about life had changed. I needed to rediscover myself, but also deal with what I’d gone through. It was a very isolating place.”

The stigma she noticed magnified this. “In my community, having cancer is stigmatised,” says Pero, who “lost friends” and had people stop talking to her after revealing her diagnosis.

A big gap in services

After her treatment ended, Pero went back to the hospital to ask about “further help and support mentally”. She’s “incredibly thankful to the NHS” and appreciates the strains hospitals are under. However, within the support that was available, there were big gaps.

“They were sort of like, ‘Well you’re a smart girl, why don’t you Google what help is out there?’ And do you know what, there wasn’t much out there, particularly for a young black woman,” she recalls.

Already very community minded – Pero launched award-winning dance company, The Movement Factory, as a teenager – her experience of cancer “wasn’t something I could walk away from”. She started blogging about it, and soon started receiving messages from other women who’d been through similar things.

“I got an idea of it [the stigma and isolation] when I went through it, but some of these stories were unbelievable,” says Pero.

“Some were saying, ‘I’ve got cancer but I’ve kept it secret because I can’t tell my family and friends’. Stories about women who’d been told not to take chemo, to carry on as normal. Going through a diagnosis alone, going on the bus to hospital for chemo then coming home to look after the kids – can you imagine?

“Don’t get me wrong, cancer is always a very horrible, lonely and scary place, but having those extra pressures was just unbelievable.”

Black Women Rising

Like Pero, none of these women had felt there was a support network or safe space for them to talk about what they were going through. Eventually, she decided to “organise a get together” – her mum baked some cakes, she booked out a meeting space in her office, and “about 10 people turned up”.

Pero recalls: “It was just us in that space together, and there wasn’t a dry eye in the place. People were just so elated to be talking about their cancer. One woman who came along was about 10 years post-cancer, but her hair hadn’t grown back. She said it was the first time she’d felt safe to talk about it. It really showed how recovery after cancer is so difficult if you’re not given a comfortable space to talk.

“That’s when Black Women Rising really started, that support group right there. And I thought: ‘We’re going to continue this’.”

Since the pandemic, Black Women Rising’s peer support groups have shifted online, which Pero says has actually been helpful in terms of reaching more people. There’s also a creative hub, with photography exhibitions highlighting black women’s breast cancer stories, and now the magazine too.

Awareness and tackling stigma is vital on multiple levels, Pero acknowledges. On one hand, it plays a big role in ensuring cancer is detected and treated early, which equates to higher survival rates. Making cancer less lonely is also key – and there’s joy in the sense of empowerment and connection the project brings too.

“The magazine has brought joy to so many women, seeing other women of colour talking about cancer,” says Pero. “Just being able to find a publication they can relate to, from diagnosis all the way though to survivorship or stage four.”

The power of connectionIt’s helping educate cancer charities and healthcare professionals too. This has been a big part of the picture for Pero, addressing things like diversity and representation in charity campaigns, what charities are doing to attract and connect with BAME communities and whether it’s working. She’s thrilled when healthcare professionals order the magazine in order to educate themselves and learn more about experiences within the black community.

It’s been hard work, most of which Pero has juggled herself, although she’s hoping to recruit and says 2020’s Black Lives Matter movement sparked some donations and enabled them to pull more of a team together. Pero was also awarded Lottery funding for her charity foundation.

Knowing the difference it’s making, and imagining how isolating it must be for women going through cancer during the pandemic, she is keen to see it keep growing.

“I’ve been contacted by women of all ages, and young women of colour from all over the world, about being diagnosed and going through treatment and not having role models to look up to,” says Pero. “It’s amazing to be able to connect with so many people. Not feeling so alone and finding that safe space to share really does make a difference.”

To find out more, visit blackwomenrisinguk.org. The magazine can be ordered for free from the website (postage and packaging £3).