Should I Delete That? - Leanne Pero on Creating the Community She Needed

Episode Date: December 4, 2023

This week on the podcast, Em and Al are joined by founder of Black Women Rising, Leanne Pero MBE! Leanne is a Social Entrepreneur, Author, Speaker, Breast Cancer Survivor. She shares her story with us today: from childhood trauma and entrepreneurship, to a cancer diagnosis and finding herself again. Follow Leanne on Instagram @leanneperoofficial and Black Women Rising @blackwomenrisingukFollow us on Instagram @shouldideletethatEmail us at [e-mail] by Daisy GrantMusic by Alex Andrew Hosted on Acast. See acast.com/privacy for more information.

One of the first things that I was told when I told an outside friend that I had cancer was I was told, oh, black people don't usually get cancer. You know, this kind of ignorance, I was told not to take the chemo because chemo is not made for black people, so don't take it. Go natural. Hello and welcome back to Should I Delete That. I'm M Clarkson and there is no Alex Light today, although she's not. still very much exists. She is not joining us for the intro, which is probably just as well,

because guys, I'm doing it from a mini mic. And if she could see me now, she'd be so mean. So it's just as well. I'm doing this in the privacy of my own hotel room, which brings me on to why we're not doing a GBA this week, due to personal reasons, which is something that makes us sound very suspicious, and I apologise. I know it is the 2003 equivalent of the 2008 Facebook photo upload of your arm in a hospital gown with the drip coming out of it with no further details and then if anyone asks in the comments you'd go oh i'll dm you hung now i know who my real friends are you know what i mean we are a rousing suspicion sorry you can hear arlo in the background that's not really what we're doing we're absolutely fine i'm just away i'm in tener reef i'm living

my best life um i'm here for a couple of days al is great she actually wasn't invited to gba this week i did not invite her here today um because in case we didn't notice. She's so pregnant and she's been working so hard and she just needs to like not do that for a day. She just needs like one less thing on her plate. And I was like, you know what? I'm just going to eat this. I'm going to eat this off her plate and I'm not going to tell her. And then she'll come to eat it and I'll be like, sorry, already gone. So that's that. She's honestly absolutely fine. I think she just needs to spend like three days watching reality television and like not speaking to anyone or doing anything else. So that's that. I am, I am alone. Which means I

won't give you my goods or my bads or my awkwards. I will just give you a tiny, tiny, mini little bad that I want to tell you what Al's not here, because I know with a hundred percent certainty that she won't listen to this, because she is a fool and she trusts me with our brand. The flights are back. That's my bad. It's very bad. And I just don't want Al to know because I know what she'll say. She'll be like, oh, you're disgusting. You're wrong. Have you died? You're foul. Why are you telling them that? I wish this wasn't your whole personality. I'll be like, yeah, no, I know, I know. I wish it wasn't too, but it is. The flies are back. It's so embarrassing. I'm here with my friends. I can't explain it. The flights, leave them

alone. Follow me. Swarm round. I had like four on my leg guests. I'm like, am I okay? Am I okay? I hate it. Anyway, I don't know what's going on because the English one's got the brief. They were like, no, we'll leave her alone. She talked about it on a stupid podcast. Let's go. But the Spanish ones, they don't know that. They don't know that it means a lot to me that they're not my whole personality. So they're here. Anyway, that's my bad. I'm not going to talk about it next week when I'll get it's here because I want to pretend it isn't happening. And hopefully I'll be back with the English flies. Who know to back off. You know what I mean? Anyway, that's it. We'll save the goods, the bads and the awkwards until next week when our is back. We're here on Thursday.

Everything is normal. We're just cooling our jets this week. And I hope you will forgive us for that. We're going to go straight into the interview and it is a doozy. We spoke with the amazing Leanne Perrault, MBE. And we know you are going to love her as much as we do. We spoke to her a lot about her incredible community, Black Women Rising, which is all about empowering women of color through their cancer journeys. I am just going to put a little bit of a trigger warning, though, because at the beginning of the episode, we did speak to her about the sexual assault that she endured in her childhood. So if you want to avoid that bit, you can do. Now I am going to let you go to enjoy Leanne. I hate doing this alone. I feel incredibly awkward. And that's

that. I don't want to do this again. I feel very weird about it. So people who do podcasts on their own honestly they've got a new level of respect from me because i'm just i'm as i'm speaking i'm like ick ick ick foul gross disgusting who are you no one cares it's not great actually um so i'm gonna go i'm gonna go i feel so awkward oh my god all right guys i love you so much um don't worry we won't have to do this again al will be back next week and we hope for now that you enjoy leanne love you loads see you then hi leanne hey thank you so much for coming in today for joining us We've got a few things we've want to talk to you about. So I found your account because you were working with Esté Lauder in October for the breast cancer awareness, their campaign, which they do every year, right?

And you did a speech for them. And then I saw a few of my friends tagged you and was like, she was so inspirational. So I was like, oh, I need to talk to us. That's how I found your account. A few things we want to talk to you about. But I thought we could start at the beginning. and you actually became an entrepreneur at a very young age, right? Yeah, I did, yeah.

Like, as a teenager at 15, you founded the Movement Factory. I did. Can you talk to us about that, why you did it and how it went and everything? Yeah. So, do you know what? I was a childhood sexual abuse victim. You know, I went through childhood sexual abuse, and I ended up leaving my family home at that age of 13,

and I moved in with my estranged dad. So at the time, I felt really isolated and alone. But at the same time, attached to my secondary school was a youth centre that provided free dance classes. And I guess that was my way of kind of expressing myself, doing those dance classes and just immersing myself in the whole youth club experiencing being there because I didn't want to go home, you know? And, you know, naturally, I've always been really bossy and everyone would like to say bossy and controlling. but I see it is my good qualities. But, you know, I sort of took that role on as being like the dance captain and making sure everyone came to rehearsals and, you know, it was just my crutch.

And I always talk about dance being the very thing that saved me in those times. And by the time I got to 15 and my dance teacher who was a dance champion needed to go off and perform and travel, they asked me to take over a class. So it was then I took over a class. I was 15. And I just got my, what was it, an I number through. And they gave me a Friday night slot at the youth centre teaching my own class. And I jumped at the chance.

And I just remember that was in 2001. And I taught a class and it was just rampacked. And it really, really grew from there. One class turned to two, two classes turned to four. So it wasn't on purpose. It just, I think I just responded to need, really. And people wanted it. That's so lovely.

That's, I mean, I had, I had. actually hate this word but it's very organic yeah it is I I say that because I hate when people say oh you started your business at 15 how did you do it and I'm like no it wasn't on purpose like I just wasn't that I wasn't thinking in that way it's just that stuff happens yeah and I guess you were I mean that was a really turbulent it sounds horrendous like a very turbulent time it was a really difficult time that was giving you the dance classes are giving you like stability and some absolutely yeah it was giving me an exit from from what was going on you know, because there was serious stuff happening behind the scenes, you know.

So it was, it was great. And what that enabled me to do as well was create safe spaces for others. Because let me tell you something at the time, you know, and I'm thinking about the age I was, you know, and you're talking to friends about it and things like that. And you realize you're not the only one that's going through this sort of stuff at home. So actually it was about providing a really safe space for women to come in and be together. Women, girls, you know, children. Yeah.

It's a lovely thing that you do, like, and you describe yourself as bossy and I hard relate to that because I was really bossy good. But I think that's like that was always the elder sister thing. And I think it kind of sounds, I mean, on a lot of levels you had to grow up really fast. But that's quite a big responsibility then that you take on not just in this like teaching the class. But also you take other people's pain if you're providing them the space to like escape it. But that's a big responsibility. Like, did you feel that at the time? I didn't because I hadn't done the self work that.

I've done now when I learned about people pleasing and helping people and giving too much of yourself. I think at the time it was like, oh, in a way, you're getting all of those kind of feelings that you want to feel at a time where you feel so empty, which is people relying on you, people loving you, people, you know, there was all of these things that brought so much feeling. What I will say to you, though, is, and I think this has always governed my life, I have always been a natural person to help people. I know that that's my purpose in life. I know that that's something that at 15 years old doing those classes I was addicted to.

I love helping people. I love building, helping build communities and people and taking people from really crappy situations and turning their lives around. That's what I love to do. So I guess that helped me find my purpose. But definitely, I never thought of it like that until my work, obviously, a lot later, about how much I was taking on at the time for such a young age. Yeah, because, I mean, there's so much that you had to work through as well.

Did you work through it or did you pour yourself into work? I didn't. I didn't work through it because no help was given. Was it not? No. But to leave home at 13 is... Yeah, that's really rough. Yeah.

When did the self-work come? 27. You're joking. When I broke up with the guide I was with for 10 years. You're joking. Yeah. It was when I, when I broke up, we broke up for lots of different reasons. But one of the biggest reasons we broke up is because I couldn't, he wanted a future and settled down by that time we were 27. And I couldn't see that. I couldn't see all of that. I couldn't see that kind of

grown up life for me because I, my childhood got so cut early. And so I would say definitely at 27 when that relationship came tumbling down and that's all I'd known. I was a adult now, 17 to 27. And I was really struggling mentally to process that breakup. And I was like, right, I need to get help. So initially going to therapy, because I thought it was to get over the breakup. And they turned around on the first session and they said, you got a lot. You got a lot. We might need to go a bit deeper. And the first thing, once they sort of mind mapped every single thing I'd gone through up until that point, the first thing they said, right, we need to talk about this sexual abuse because that's the very thing you hadn't got help for and would you believe within

I think it was like two sessions everything changed everything really because that was the first time someone had opened up I suppose the floodgates for me to be able to talk about it without shame without blame without feeling so responsible right because prior to that to that first therapy session Had you spoken to anyone about your sexual abuse? I had spoken about it, but, you know, I think there's a massive difference between talking about it to people that you know and people that are professionals in a situation to aid for help.

I think it was always seen as, I remember sharing it at such a young age even with professional work at places that I had been in, you know. And I remember people didn't really know how to react or you'd get a lot of like, you're so inspirational because you've got your dance. company and your diss and you're that. And again, by getting that praise, you kind of clouds what's really going on behind the mask, you know. So I guess this therapy when I started at 27

really opened my eyes to what I'd been carrying and how I'd been carrying it. Yeah, it's also hard if you are praised for being inspirational and dealing with it because then you don't feel like you want to go back and be like, well, actually I am struggling with it. Because then you're worried that you're not inspirational anymore or you're not. exactly so when you had the therapy sorry it's really like I don't expect a therapy that's right I love it did it help you it's really interesting that it was like the manifestation of what happened to you kind of prevented you from being able to see a future for yourself yeah did you was did it help did you were you able to start visualising what

you wanted to absolutely really really quickly it was for me I think trauma we don't talk about there's a lot of talking about trauma actually now but we hadn't done really, if we think about it, we didn't talk about trauma, we didn't talk about the impact of even PTSD, like, and how much that had, like, erased a lot of my memory up until that point, how it put me in a situation where I had some severe anxiety. So one of the things that I couldn't do was I couldn't actually be a performer myself, because the stage nerves and fright was so bad. At 19, I said, I'm not going to perform anymore. I still continued to teach dance, but I actually didn't, I stopped performing at 19 because, but what I didn't

realize at 27 was that where I'd been going around feeling ashamed or feeling like, you know, defeated, that I couldn't dance anymore and all perform. When I got to 27 and I'd done this therapy, I was like, the woman was like, oh, you had PTSD and I was like, huh? You know, and it was like, all these realizations of how my life had been up to this point, I'm telling you, the transformation was incredible. It was even in, right, can I just say one of the biggest things I remember, and my friends will tell you this, I remember just everyone used to, would call it now, like this glow up, how I looked after myself, how I started to like really own who I was and own my body. After going through something like sexual abuse, you don't see yourself as being

beautiful. You want to hide, you know, behind. I felt like hiding. I never wanted to ever be visible or even have a voice. You know, it was all those things that really changed for me when I had that therapy. So, yeah, it was amazing. It didn't last long with that practitioner, but it was transformational for me at the time. That's obviously amazing.

It's just sad that it took so long. Yeah. I guess for you to be offered therapy, you know, and to be offered some help. You should have had that way before. Absolutely. We know just like the impact. that sexual abuse has on people, it's huge.

And it completely changes your life, right? Absolutely. Absolutely. So it's, yeah, there must, is there a bit of, I don't know, I guess, anger that nobody brought this to you before? I would say it was a lot of anger there when I got to the age I did and I saw how much help and therapy could have helped me. What I will say is I live a life now where I'm so thankful for the way

Everything mapped out. So I'm grateful for the way that the way it worked because I wouldn't be doing and who I am now. But at the time, it did anger me. And what saddens me now is I go, fair enough, I got through it. But what about other young women who may be experiencing that and are not being offered help?

But that first foremost, when you first contact the authorities to say this, why wasn't their help on hand? And I think I always do think about that. And perhaps someone that is not as lucky as me, to be able to be as proactive to try and change that in my life, you know. So, yeah, it's a very, very, very awful way. And it's an awful system that still needs a lot of change.

So, I mean, that already is quite a lot to have gone through. Yeah. It didn't quite end there, did it? Because it was, I think, in 2016, when, how old were you then? 30. 30 when you were diagnosed with breast cancer rough that's so rough three years of like living my life

yeah and the glow up three years of the glow up oh my god I bet you couldn't believe it no I couldn't what stage were you at in your life when that when you were diagnosed listen I was I would say it was like on top of my A game I was kind of back I was really looking after myself I was in a really good physical

shape as well. Like I'd been, you know, I'd stopped teach and dance a few years before. So I was really focusing on like my mental health and looking after myself and wellness. I was doing really well in my career. You know, I was made CEO of Pineapple Dance Studios charity. You know, like I was doing so much amazing things. I'd written a book as well about my experiences. I was doing really good. and it was when I got to the book launch in February 2016 and around that time my mum sort of was a bit not herself and I sort of said, you're right and whatever. And I remember it was a couple days after the book launch.

I said, what's going on with you? And she said they found another lump. So my mum had been diagnosed at that point at like 24 years before with breast cancer. So she had had breast cancer once before. And then she said, oh, they found a lump and they want to investigate further. And she just wasn't herself. So I decided to go to all the appointments with her and stuff. And I went to every appointment with her until the appointment where they said,

yeah, your cancer's back. So that was, that just threw me because I was like, oh my God, holiday booked. I was like, nope, not going. You know, it was just like, yeah, bang, bang, bang, mum's treatment. I was the one I had to break the news to my brothers and sisters. It was all systems go. And then she found out she didn't have to have chemo this time round, which was amazing for her, you know.

know, being a bit older this time and just not wanting to go through that, you know, and I got her through all the things she needed to do. And then I found a lump of my own. And I thought, well, I'm not going to sort of overshadow all that was going on. And I ended up going on that holiday because obviously I was able to go because my mum didn't have to have chemo. So she said, go, go, go. So I went away.

And I just remember, I just ruined the whole holiday because number one, I was exhausted for what I'd gone through with my mum. But I just generally did not feel myself. I was so knackered. The lump was still there and I was like, right, when I get back, I'm going to go to the doctors. But I just was not myself.

I was throwing up after dinner every night. I couldn't drink. You know, when you're on these holidays and things, you know, these are things we work hard for in this country. So going to get some sun is a beautiful thing. And I just remember, I felt so bad. I ruined a holiday with my friend that we'd sort of saved up for. And I came back.

I was like, right, let me go to the doctors. And I did. And he turned around and he said, you're being paranoid. You're far too young. Look at all the things you do in your life. You know, you're paranoid. He didn't even check it.

He just sort of seven home. He didn't even check it. No, no. No. Don't check it. Oh. So I left and I thought, okay, all good. You know, I'm fine.

And then, you know, I went away again and I was on holidays. I was in Ibiza and I was showering and I was like, this is not going anywhere. In fact, it's got bigger. And not only that, I could see it coming out on the skin. So I thought, if this is not breast cancer, which I didn't think at the time, I thought maybe it's a cyst because you could see it and it was quite lumping. I thought, okay. And, you know, I still never took it seriously when I got back. And then I went to a massage to one of my therapist, a holistic therapist that does all my massages and stuff.

And she said, I don't like the feel of that. And she said, I want you to go to the doctors tomorrow. And I said, I can't go to the doctor's tomorrow. You know, you have to book an appointment. And she said, no, if you call them up and tell them, that your mum's just had breast cancer and you found a lump, they'll see you the same day. I said, never in my 30-year history as my doctor's done that,

would you believe the next day I did call them up, and they did see me that day. They actually did. And so I went in, it was a woman this time, a woman I'd not met before, and she felt it, and she said, I don't really like the feel of that. So I'm going to escalate this as an emergency.

So if it weren't for that massage therapist, saying that, I still wouldn't have taken it seriously. and within what four weeks I always say to everybody I was diagnosed with breast cancer and what stage was the breast cancer you diagnosed? It was stage three, yeah, stage three breast cancer fast growing breast cancer, it was active and it wasn't just one lump in the breast

it actually was all around the breast and it was a massive shell shock to the point I think I still never believed that I had breast cancer So I took my brother with me and my best mate. And even then, but it was when I got in that waiting room and I saw the woman behind the desk who I'd seen so many times before because I'd been in there with my mum.

And I thought, she's looking at me. Something's wrong. They'd left me right to the end as well. And I was like, something's wrong. And then I saw my mum's consultant. And I felt like turning around and saying to them both, go back and sit down, but I didn't. I went in.

And there was no leaflets on the desk. Like I kind of knew by them what to expect. And she just said, Leanne, we've been here before. I'm not going to be it around the bush. We found cancer, you know, and that was exactly what she said. I'll never forget those words. And life changed. Are you so angry with that first doctor?

I'm so angry with him. I'm just sitting here like furious with him. I'm not. I'm a massive, massive person. I believe in a lot of forgiveness for things. And I just, I think things always happen the way they need to happen. and what I will say again is that it angers me

that people are not hearing us talk when we're saying we've found something because that doesn't happen now because of so many people talking about these sort of things they're escalating straight away now they might not even check it because they're like okay I'm signing you off to the hospital now but the women I met around the time

that I was diagnosed and stuff we were all dismissed I mean that is like severe medical negligence to not even check it Yeah, it's unbelievable What was the time difference between that first appointment and the diagnosis Wow, three months Wow So it could very easily have been caught

Of course, it would have definitely have been caught three months earlier Yeah, I hope he was informed Oh yeah Yeah, he was informed, definitely Yeah, good, yeah So what did your treatment look like? So eight rounds of chemo, I ended up having genetic testing to see there was a correlation between myself and my mum.

There wasn't. No genetic testing. No, it's very rare, actually, to find the BRCA gene. It's actually quite rare still. Is it? I do believe there are mutations, and they believe there are different mutations out there, but science is not as advanced yet to bring those to the forefront. But in terms of the BRCA 1 and the BRCA 2 gene,

No, we didn't have that. But what they did do is they did their little probabilities, and they said there was a 67% chance of it coming back in my lifetime if I had kept both the other breast. So I opted for a double mastectomy and reconstruction at the time. Did you? Yeah, I did. Do you have that before you start your chemo?

No, I have it after. And believe me, they fired me. Hookline and sinker for that operation choice, because they were like, why are we going to remove a healthy breast and all this sort of stuff? And, you know, thank God I had had the know-how from my mum to advocate for myself because that was hard. I was even pulled before the operation happened off of the operating table about to get anesthetic by the doctor, the consultant. And he was like, I just want to ask you one more time, are you sure you want to get rid of this healthy breast?

You know, so again, it's like we're not being listened to. We're not being heard. This is what I want. And I've made my choice. I've not just woke up one day and said I want both my breasts off. It's because I don't want to go through what my mum went through, you know. That's mad that there wasn't any respect for your wishes on that. No. No.

And it doesn't make any sense. If it's a 67% chance, it's a very logical, right. Absolutely. A horrible decision that you're making. Like you say, there's no, it's not an easy option. You know, it's not an easy choice to make. I don't understand why they wouldn't let you just advocate for yourself in that regard. I know.

That's really bizarre. Sorry, I don't know enough about this process. Of course. have all your chemo and radiotherapy maybe and then you have the operation it's not one size fits all everyone's different yeah some people have the operation before some people have it after it really does depend it depends what type of breastcounts you've got grade stage so everyone's everyone's different i've not known anyone's treatment plan ever to be the same but mine was eight rounds of chemo, you know, and then they wanted me to have some, they're called

Heseptin injections for 18 months. And then, so that was every three months, I was going back for an injection and then, you know, the operation after that. And then if they wanted, if they needed at the time some radiotherapy as well. So I mean, everything, do you know what I mean? And I just remember at the time, but I was like, do I have to stop working? You know, that was it, you know, who's going to run my business? You know, you're not thinking about yourself. you're thinking about everything else and then the woman just basically said we usually advise people to take six months to a year off

and in your case you're getting a lot happening you know so with your own business you know six months to a year oh my god but I had these wonderful girls Abiola and Zara they were angels you know and they were just sort of helping me out administration or wise anyway and they just took over everything and ran everything for me for a year

wow and like and I think that was the great thing about building that little community that I did of dance and that dance community that I had was that when my back was against the wall, they stood up and said, listen, we're here to help. And they did. They took everything over. But yeah, that's right. That's what you were saying before.

You know, like you say, you know, you were a big believer in helping and you made that space. And it kind of feels like the universe gives what you put out. And it feels like that they, you know, you'd stood up for so many women before. So when it was your time. Yeah. Yeah, I believe that. I'm a massive believer. And speaking of that and you feeling like your purpose is to help people,

you founded a charity called Black Women Rising as a result of your experience with cancer and cancer treatment. Can you talk to us about that and tell us about that? So I founded Black Women Rising because I just felt that there was not services or safe spaces for black women to come together and talk about their diagnosis. Now, the funny thing is I talk a lot about Black Women Rising, but I think one of the things I failed to talk about is about why it started.

It was very natural, if you know me, it was very natural of me to go through something like cancer and then create like a support group afterwards because look at what I did with dance. You know, the community spirit is in me. I like to bring people together and I think that, you know, communities build each other. That's what built me up when I was lonely

is the community feel. home away from home, right? And as I started going on the ward and I'm quite chatty and I started talking to a lot of women of colour that were there on their own, you know, I started to realise there was a lot of common denominators with this fact that there was a lot of ignorance around cancer within the community. For example, one of the first things that I was told when I told an outside friend that I had cancer was I was told, oh, black people don't usually get cancer. You know, my mum is mixed race and I was told, oh, it must be the white gene because black people don't usually get cancer, you know, and these are like the ignorance. It's like, really? You know,

this kind of ignorance, I was told not to take the chemo because chemo is not made for black people, so don't take it. Go natural. I'm like, mate, yeah. And there was a lot, you know, cancer's not of God and all of these sort of things and, you know, you've got to pray it away. is it a curse? I was told by church leaders not to cut off my breasts because God wouldn't want my breasts to be cut off. A lot of ignorance within the community around cancer. And it really stems from a lot of like cultural belief systems, myths and taboos, but also a huge distrust with the medical system in this country, which we know has racial bias tendencies, you know, and it's created a lot of distrust. Look at COVID. Look at all these

different things where there's a mistrust between the healthcare system and members of the black community or ethnic minority communities, which is the truth. So I started to see that from a really sort of based level because of the women I was talking to. For example, I'd be in the chemo ward, be there with my mom, all the doctors and nurses, they knew us, so they were really friendly with us, but then they'd be chatting and being like, oh, you see that woman over there, she's difficult, which was a very sort of an African woman, you know, strong accent, not really great English, but had never heard of cancer before, never knew cancer existed in any realm, let alone her. So she was trying to make sense of her diagnosis and asking

questions, but it was labelled as difficult. So there's this lack of understanding and lack of knowledge about what these communities are actually going through when it comes to a cancer diagnosis. when a lot of it is around not knowing that cancer even exists in these communities, but also that they're even included in the narrative of cancer. Because let's be honest, when I was diagnosed, what, seven years ago now, I didn't see people that look like me. I went into hiding. I wasn't doing all the social media things that you see people do now, you know,

and video diaries of going through cancer. Mate, that was that other question for me. I didn't see anybody that looked like me. I never saw people on leaflets and magazines. I never saw anything. you know there wasn't any black cancer influences or anything that was sent my way apart from one girl that I know but there was nothing there was nothing to say that there was other 30-year-old black women that had cancer so for me it felt really a lonely lonely space and I knew that I had to create a safe space for us all to come together to talk

you know and it was only a few of us at first that would meet in the matmillan centre that was attached to a hospital have a cup of coffee and talk who knew how far it would grow nearly five years on. Wow. Yeah. Statistically speaking, is there a lot, is there enough? I mean, I presume there's not enough, but into the negligence, I guess,

that black women are experiencing from the medical professionals when it comes to diagnosis. Do you think that that's connected to you, that first appointment with your GP? Do you think that's? 100%. I mean, there is no statistics. Definitely not.

There is not enough. I know that there's little things floating around. So black women are twice as likely to die from breast cancer. than our white counterparts. That's a huge. Huge. 71% of black African women will be diagnosed with secondary breast cancer than our white counterparts. Wow.

These are the small statistics that are floating about. But I did a couple of years ago when, because you've got to understand, creating an organization where I'm talking about race and I'm talking about disparities in our community, I have been trolled. Have you? I mean, you get trolled anyway, but you get trolled. I've been horrifically trolled. I've been called a racist, a race beta.

all this type of stuff and I get it and I'm slowly I've kind of got used to it but I don't get it oh god it is horrendous yeah it's horrendous yeah being called

racist I've been called all sorts of names that we wouldn't even be able to say on this podcast being called all sorts and it could be something as much as you know like I have a magazine

that I've created for women of colour that they can feel empowered to go through their cancer diagnosis you know I was put up on a on a charity's Facebook page. My God, you know, it was like a weekend of infighting. Seriously. Oh, it was disgraceful.

The stuff that was written on there. And I'm telling you, some of these trolls as well, we got, we managed to filter them out and find out who some of these trolls were. And these were people who were like ex-servicemen and, you know, people in the military and stuff like that, like literally saying like these horrendous things about race. And it's like the statistics, although they're small, they're there. black women are dying from breast cancer more than our white counterparts

people are being diagnosed at late stage cancer our people are dying what do you want us to do sit back and pretend that all of our lived experiences are the same they're not and I keep saying that to everyone yes we are part of one human race look at my family half of them are white half of us are black I have these conversations

it's about education you know we are the same human race but our lived experiences are very different I live a very different experience in my life than my mother, they're my cousins and that is the truth so because of that the way we navigate life

and what we have to do to empower ourselves through life will be different and so safe spaces like Black Women Rising which exists because we have to create safe spaces creates a beautiful space for women who share the same cultures and belief systems to come together and have some support and that's the only reason why it's

You know, there's a lot of things in Black Rumerizing. I can't relate to because I hadn't been brought up in those same cultures. I've had a very different upbringing than a lot of black people. But like I said, I have this really strong passion for building communities and bringing people together. And what I saw and what I've been sort of privy to seeing or the stories that are shared with me say that a space like this needs to exist. Our membership for Black Women Rising went up from 100,

50 last year. It's now at 400. It shows that it's needed and people are getting the benefits of having the space. Does it mean that we're anti-white or we don't like white people? No. In fact, what, 90% of our funders are white people or white organizations because they support us, because we work in conjunction with them in order to change these statistics and there's disparities and they want to help and they share the same mission as us. But yeah, it's been difficult to say the least. I'm really maybe it's naive.

I'm really shocked that you're having that there's anything controversial about what you're doing. With those two statistics alone and I feel like even without them it's not a looking simply at how the rhetoric around COVID was for people of colour

it's not a stretch beyond anybody's imagination even without the statistics to believe that that's the same case in the cancer communities. So it's a real shock that you're getting so much backlash. You're getting something that seems so necessary and obvious. Yes, it's like that. I was on Sky News about a month ago.

Oh, my God. You know, like, you have to come off socials for a few days because it's, like, horrific. Does it tend to be men? Do you know what? It is a lot of men, but women as well. Really? Sometimes it's even black people as well.

Like, don't ever, like, get it twisted. It could be sometimes your own community. I'm always quite struck when I've seen some of the worst trolling I've ever seen within cancer communities. it's very often other cancer patients or worse cancer nurses. Oh, it's horrific.

The cancer in-cancer politics and fighting is exhausting at times. I guess it's the hurt people, hurt people mentality. You can say that, but I always say that just because someone hasn't had cancer doesn't mean they're a nice person. If someone was horrible before cancer, it doesn't mean they're going to be nice after. And you often find that's the case.

I definitely have found that. you know, people, I always, that's why I always ask people, who were you before cancer? Because that will give you a really good indication to who is coming and presenting themselves to you, you know. And I guess that's, that's what I'm seeing a lot of, you know. That's really disappointing though, because, you know, the space that you've created is so you need it, you know, and you love it. And it's like, it's been born out of such a lovely place that it feels so unfair then that it's met with anything other than what it was intended to be, which, It's just, just walk, you know, community. That's a lovely thing.

Warm community. It's built from love and support. But that's why I always say, you know, I come back. We may be one human race, but our lived experiences are different. And we need to start understanding. A black women's experience living in the UK is different than a white woman's experience. It doesn't mean we can't be friends, great friends, best friends, but you have to have an understanding that there is different experiences that we go through.

as women of colour, whether it's creating spaces, it could be, you know, work-related, it could be in maternal health. You know, there's a mass of things around black women in maternal health. You know, there's huge things happening. Some of those statistics are crazy. Oh, they're horrific.

It's just such a shame that people are so triggered by us, by acknowledging that people have different lived experiences. Yeah. Like, why are they triggered by it? And people think that, I suppose people think that you're saying it's hard for you and people who were having a hard time themselves so it was just but it's that's really true actually i've gathered that yeah and it ain't you know i'm here on the record to say it's not about that it's not it's not it's not a it's not a fight you know it's not a competition

what you are doing is not taking away from what they might need no no they just need to look for it in a different space absolutely so black women rising how did it go from then you meeting in the cafe to something more concrete and ending up being a fully-fledged charity. Yeah, honestly, it was just like a meet-up group that I ran in my offices in Peckham. You know, my mum used to bake cakes, bring tea, cups, coffee and a kettle from home.

And that's how it started. And, you know, my mum doesn't have any interest in being part of the group. She's just like, look, I'm happy. I can just kind of get on with it myself. She's got that kind of old school mentality getting on with things. But for me, it was more that I needed that community.

So it was just a once a month meet up. Everyone used to bring a dish because, you know, we didn't have no money. You know, it was like everyone bring a dish and we'd all talk and connect and whatever. And then one day I was finishing off my operation. So I have basically my whole breasts have been reconstructed. Right. Like, when I think about the operation, it's so cool because I was left without any nipples. So it was just like completely my skin all folded over with implants.

And then I was left about any nipples. And then the next part of the operation was that my, surgeon was going to create some nipples and put them on. So that was the next part of my operation. And I said to my really good friend, who was also based on my office, I said, would you take some pictures of me once this has been done? You know, because I would love to see what I looked like. I hadn't looked at my body. I just hadn't put on two stone. You know, as a person that's like taught dance, fitness in the past, it was just a huge blow to my body confidence. And I hadn't looked at myself in a full length mirror. And I said, please take pictures.

So it was shortly after my op, and she took pictures of me. And I just remember, she said, oh, the pictures already come up. And I did, I just thought she was going to do a bit of, like, digital photography. But she's not, she's like old school. And she does everything with like the black and white, the analogue photography. So everything process in the dark room and whatever. And I remember just walking up this slope to get to her room. And her students were coming out and they were like, we've just seen your picture.

It's amazing. It made me cry. And I was like, what are talking about? And I walked into this room. And my picture was. there and I just cried. It was just, I think about that all the time. I had not seen my body until that moment.

And it was just like, I looked, I just looked beautiful. Yeah. You know, sorry, it was just a moment. And I think, I just looked at it and I was like, I think straight away, I didn't even like have this moment of thought. I just went, imagine if we could get more women to do this picture, do a picture like this, like what it could do for our community and raise awareness in our community. community. And so that's what I did. I went about trying to find eight other women to take

this picture of their cancer scars. And then we ended up with 14 that came through an waiting list. And so we took their pictures and it became quite a massive thing. And I just remember someone saying, what do we call this? We're going to do an exhibition, what we're going to call it? And I just thought, Black Women Rising. And I remember at the time, someone said, why are you going to call it Black Women Rising? You know, you're going to get, this is again, you know, you're going to get a lot of backlash we're calling at black women rising because again it's a known thing in our community when you own who you are and you use the label black in anything it's controversial you know it's going to raise alarm bells or questions so they were like take away the

noise from this beautiful exhibition we could call it something else i was like no we're calling it black women rising and we did and we had the exhibition it was sold out went viral when it was ended up in the states it ended up all over the place these images ended up everywhere it was on six o'clock news. Hundreds of people came to the exhibition. We ended up with a second exhibition at the OXO Tower. And I believe that was where it all started for me, really, was that. I love that you called it Black Women Rising.

I love that I called it Black Women Rising and I stood up and said, yeah. So now you're funded. Yeah. What are you aiming to do with the funding that you receive? Yeah, so we fund quite a massive extensive programme. So I think one of the things we had to get clearer on is what is our stance here as a charity because, look, for a lot of people, they want to do the political thing, right? Stand up and say, look, this is what needs to change and, you know, go and be at the seat

at the tables in the room and make change. I'm not going to lie, that is really, really important, but it's just not my passion. It's not that. What my passion lies in is looking after people, supporting people, but also creatively as well. So my thing was about providing services. I wanted to provide services. So the support groups that we do are still the heart of the project. We now do a face-to-face coffee morning.

We do a face-to-face supper club every month. We have online support groups as well. We have a magazine that we provide every two years that comes out. We have our own podcasts that is informative and talks about the women's experiences. We've got the exhibition. We're in the process of creating a wonderful book with 100 women's images from that exhibition as well. Gosh, guys, like the list is endless, honestly. We've just, I just literally came back from Ghana, from a research trip about breast cancer over there and about the myths and taboos and about how they deal with, like, you know, people that come forward with cancer in Ghana.

So there's a lot going on. And so the money that we have and the money that we get in, every penny is spent on staffing and obviously funding these projects so that the women do not have to put their hand in their pocket. and pay for anything that's perfect that's so good thank you how are you now it's been seven years seven years seven years did you know what i would say first and foremost i'm in a really good place i'm in a lot of therapy and i've had to have a lot of therapy i couldn't do the work without it i think that's one thing i realized um but you know i'm i'm 38 i just turned 38 count down to 40 begins and i'm at a place in my life where what I'm realizing and I think it goes back to what we've spoke about at the beginning is where do I see, do I see myself doing this work for like forever? You know, I've taken on a lot

of people's problems and everybody else. Everything in my working life has been about supporting other people. What about me now? So I'm in a beautiful space where I'm now realizing actually I won't be able to do this work forever. I'm so, like, I'm so, lucky and blessed to be in a space of survivorship with cancer. And I know that's a place that so many women don't get. I'm losing friends every month, last month two friends. And I know one of the things that they would tell me would be to grab life and move past the diagnosis.

And I've really taken that on board. trying to, I'm not there yet, but I'm looking at where does life take me now? Through cancer, I think with Black Women Rising, I've set the most amazing thing up and it will survive a lot longer than me now. And it will survive wherever I go, whatever I do, it will be here. Will I be at the top of it forever? Hell no. There's a lot of other things I want to do.

And why? Because I'm now comfortably in a position where I can say that actually it's not about me, the project's not about me. I don't, I don't, like, before I used to get a lot of validation from running these projects and these charities, I don't, I don't need that anymore. I want to go my own path now. And I'm ready to do that and it feels, it feels really good. That sounds wonderful, yeah, because I can imagine it's, you know, having something in the

cancer community like that, as we know, the diagnosis. This isn't, you know, it's not always a good outcome with cancer. And you must be losing people a lot. And that must be, after everything you've been through, that must just be really triggering, like, again and again and again. So it makes sense, I guess, that you would want to kind of step away from that a bit and forge a different path.

I think you get to a point with the dying where you are, you become numb because you have to like I can like totally totally relate to doctors and nurses now and when people say oh they're so arrogant

and things like that like I get it like you're human behind all of that you're human right and so I'm now what I've been running Black Room Rising now for four years

so you can imagine when we've ever had a woman pass away I'm always the first person outside of family or things like that that is told to that for every person there's a funeral

For every person there's something, you know. And then it's very important, because it is very important to us to lead on the legacies of those people as well. And you're surrounded by grief, you're surrounded by death, you're surrounded by bad news. Again, when people's cancers come back, when people's cancers progress, we're head-huncho of that within the community that I've created. So there is a numbness that comes to that. And on one side, someone said it to me the other day. I don't think that it's a bad thing, Leanne, I think that you're creating a resilience. But on the other side, that is just such a human side of me is like, I want to be able to feel.

And there does get to a point where you don't feel anymore. Yeah. And that's where I'm trying to, like, say that I do know when it's my time to kind of tap out and say, do you know what, this is not normal. Experiencing this much death is not normal. but also how triggering is it to me as a person who's seven years on in survivorship because it's hugely triggering. It is.

You can't see your, there's a lot of part of me for the last seven years that's found it really hard to see a future. You know, to see past cancer, to see past death. And thankfully, you know, I met the most amazing therapist, Leo, who does this beautiful transformation.

We do a lot of things in our sessions, but this transformation. therapies that's just like really transformed my life and my thinking otherwise I'm not going to lie guys I would have not I would have stopped doing this about two years ago if I hadn't met her because it was too much you know you don't want to be defined by your trauma forever right there you are yeah and I wouldn't and I don't want to also be there's this really stubborn part of me as well right that I don't want to be defined by cancer that girl with cancer like I had the most amazing amazing career before cancer. Let's talk about that. Everything becomes cancer. Everything becomes about this and that. And it's like, actually, I was great before, thanks.

I was doing all these things before, you know. And that's why you very rarely, I do talk about cancer. I tend to not talk about my story much anymore because there's so many other stories to tell. But also, I've started to put myself first in a sense of like, it's triggering. This has been wonderful. So wonderful. Thank you.

It's so incredible what you've done in, you know, creating multiple safe spaces for people. Thank you. Thanks, girls. So proud of yourself. How's your mom before we go? She's great. She's good.

She's brilliant. Yep, we're off to Wales tomorrow to see my brother. So she's excited about that. But yeah, it's a very beautiful thing to say that after everything that we've both been through, we're still here and we're still living. My mum is 63. She's had cancer twice. She's still got life.

I'm here, we're living, grabbing life and that's another thing I always want to pass on to people that there is hope and not all of these diagnoses and things mean the end. In fact, for me and my mum, actually, we both say it's actually made us live life a lot to the full because that's what matters. Thank you so much, thank you.

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