A conversation with Leanne Pero

The magnificent Leanne Pero (image credit: Noam Friedman)

Hi everyone, Eleanor here. I hope you’ve been enjoying our series of guest blogs as much as I have?

Today we have something a little different. I was absolutely delighted to have the opportunity to have a conversation with Leanne Pero last month. Leanne has been on my list of “people I’d love to chat with” for such a long time!

If you don’t know much about Leanne, allow me to introduce her. Leanne has a remarkable list of accomplishments and accolades to her name. She has won numerous awards including “Young Entrepreneur of the Year” and Black Business Initiative Life Changer of the Year” and has been a finalist for many more. She is a business woman, author, dancer and charity CEO.

Leanne started her career at a young age; launching The Movement Factory when she was 15. The Movement Factory is a community dance initiative with a mission to create positive change, empowerment and personal development through dance.

Leanne self-published her first book in 2016. Entitled “Take Control”, Leanne’s book draws on her own experiences as an award winning entrepreneur and also shares her personal story of her journey to self-love and acceptance following sexual abuse as a child.

However, I found Leanne as a result of the work she does to support women within the BAME (Black, Asian and Minority Ethnic) community who have experienced breast cancer. Leanne was diagnosed with breast cancer when she was 30. She underwent chemotherapy and a bilateral mastectomy before receiving the all clear in 2017. She’s spoken about the feelings of isolation and shame she experienced following her diagnosis. While she was going through treatment for breast cancer, Leanne started sharing her experiences via her blog and ultimately this lead to the creation of her cancer charity the “Leanne Pero Foundation” and it’s initiative “Black Women Rising”. But more on that later!

Arising out of Black Women Rising, Leanne also created the UK’s first ever all Black female cancer exhibition “Black Women Rising – The Untold Cancer Stories” which details the journeys of 14 BAME women who have had breast cancer. If you haven’t seen any of the images, I encourage you to seek them out because they are both powerful and beautiful.

So you can see that we had a great deal to talk about! Here’s what we had to say:

Hi Leanne, it’s wonderful to have the opportunity to speak with you today. Perhaps we could start off with you telling me a bit more about you?

I was one of those people who went through childhood sexual abuse between the age of 10 and 13 which resulted in me moving out of my family home at a very young age. So I had to grow up very quickly. And whilst I was going through a court case to bring my abuser to trial (which unfortunately ended up collapsing), dance was what saved me. I started dance when I was about 11 and first started secondary school and dance really saved me.

When I was about 15 and that ordeal was over, I was in the process of the initial healing stages. I was attached to a dance school and they saw that I had the potential to teach…I’ve always been bossy! And they saw what dance had done for me and I had this real desire to help other young women who had been going through really tough times and to use dance as the tool that had really helped me to help them as well.

So that’s how the Movement Factory was born when I was 15 years old. It was my first job and it was £6 and hour which I thought was amazing! And I remember the first class I taught was so packed that it had a waiting list. It was a fantastic start to an amazing career during which I have had the pleasure of seeing the difference it makes to young people’s lives and seeing the success stories. I celebrate 20 years next year.

It’s been brilliant. Our ethos is still the same as it was at the beginning: we’re here to help young people and we use dance to help them socially build happy, healthy lives in whatever they choose to do.

Leanne speaking at a Black Women Rising event

It seems to me that there are two themes there that have carried on throughout your career; supporting other women, sharing your experiences and your story to lift, elevate and support other women to share their stories and the idea of the importance of creative expression which comes through everything you’ve done.

100%.

You published your first book, “Take Control”, in 2016. Tell me a little bit about that?

After I went through the sexual abuse I suffered terrible post-traumatic stress disorder when I was about 19 or 20. We were still living in a time when mental health was such a taboo and no one admitted struggling. I had some counselling in my early twenties and that was the first time I had had access to real counselling and I learnt so many hints and tips about real self-care. I wanted to talk about my ordeal and how it had come back to haunt me and the things I’d learned so I started writing a memoir of my story. I used my story to share some of the tips and hints that I had found really helpful because I wanted to help other young people who had gone through depression like I had. I released “Take Control” when I was 30; about 6 months before I got breast cancer.

It seems that having that written creative outlet is something that really important for you as well. I was looking at some of the blogs that you wrote throughout your cancer treatment which I think are really powerful. Is that something that helped you throughout your cancer diagnosis and treatment?

Oh my god, yeah. I’ve always been a writer and a creative writer and writing was very therapeutic for me. Just having a place to express myself.

My mum has had breast cancer twice. She first had it when she was 36. I don’t actually remember her having it the first time; I sort of remember her going through it but I don’t remember her full journey.

I released my book in February 2016 and sadly two weeks later my mum was diagnosed with breast cancer for the second time. She caught it early so she didn’t have to have any other treatment and had a mastectomy straight away.

I was diagnosed shortly after. I had found a lump earlier in the year but dismissed it after I spoke to my GP and I was told that I was too young.

When I was diagnosed, the whole family was so shocked. I was devastated. Shock doesn’t cover it! I think for us all it was such a shock because I had always been a really healthy dancer. I’ve danced all my life, I’ve always been into the gym and had a good diet. It was so unexpected. I couldn’t eat for about 9 days. I went into absolute shock.

The thing that really got me was the sense of shame which meant that I went through my treatment with very few people knowing. I came off most social media, I didn’t tell people.

I remember not feeling like I could relate to anybody. I didn’t know about any black people who had had cancer, let alone any young black women who had had breast cancer. And I felt like my body had failed me so I went into a place of feeling completely isolated and I hid away.

When I did speak to people in my community, I was met by various unhelpful comments that made me feel quite guilty for having cancer.

I realised that my mental health was really suffering so I asked the hospital for some mental health support which actually wasn’t available. So I began to blog about my experiences online and began to connect with so many other women from my community who were going through similar experiences and that’s when I realised that there’s a huge sense of shame in the BAME around cancer. That’s something I hadn’t been aware of before.

Leanne’s last day of chemotherapy

Going through anything like this, it’s gut wrenching and awful and so isolating. To then have on top of that that feeling of shame must have been awful. Tell me about that and where that came from because I think that’s lead you to what you have done subsequently.

My commitment to the community has always been very clear. I feel like it’s my purpose in life. I’m good at it. Everyone has a purpose in life and I feel like mine is to serve my community.

I knew I couldn’t go through the diagnosis and not use what I’d learnt to come back to my community.

I wanted to educate people that this can happen to young people as well. So I started to record my experience in a blog documenting important milestones like my first chemo, the day I shaved my hair, my surgery.

Breast Cancer Now picked up one of the blogs and asked if they could publish it on their site. When they did, I was inundated with messages from women saying “I’m going through the same thing as you” and sharing some really horrible stories. I realised that women were seriously suffering, were seriously traumatised by what they had been through and that this was lasting for sometimes years after their treatment. They told me things like they’d effectively been banished from their families as a result of their diagnosis or people had disappeared from their lives because of fear they would “catch” cancer.

I spoke openly about the fact that I had lost a lot of friends from my community, people I’d known for years and gone on holiday with, people I thought of as my best friends. They stopped talking to me after my diagnosis and when I was going through cancer. They didn’t understand why this was happening to me.

I realised there were many challenges for women of colour going through a cancer diagnosis and treatment and that many women felt isolated and traumatised by the experience.

Then I started to delve deeper into the uncomfortableness around cancer in the black community. Some women were telling me that they had been told “don’t cut off your breasts, God doesn’t want you to cut off your breasts”, or “don’t take the drugs, they’re ungodly,” “we can pray away your cancer.” I was even told at one point that someone had coughed up their cancer. I heard about women being told not to come over to family for Christmas because they didn’t want people to feel uncomfortable or to know their business.

I became an advisor to a lot of women and realised that I was still traumatised myself and I couldn’t do it alone. So one day my mum baked some cakes and we had a kettle in my office and I invited women to come down and have some peer to peer support. And we started out with eight women and we’ve not stopped since!

That’s how Black Women Rising started; as a peer support group for women of colour to come together and share their stories and experiences of cancer.

I went on to formally create a charity; the Leanne Pero Foundation, in 2018. The charity is growing all the time. The most successful project underneath is it to date is Black Women Rising but we have some further projects in the pipeline including Black Men Rising which will be launching in 2021.

Black Women Rising has done really well and it think that’s because it’s just a very genuine project and there’s not really anything else like it.

Now we have an amazing magazine in the pipeline to continue to provide support and resources for women going through a cancer diagnosis and treatment. It’s going to be a “one stop shop” where people can find help and support.

This sounds amazing. Tells me a bit about the magazine. Where it’s come from and what it’s going to be?

It’s going to be a glossy magazine that we’re hoping to release annually. It’s going to have beautiful pictures of women, case studies and resources, hints and tips, books to read, hints and tips for family members. Some stuff around the clinical stuff. Lots of bits to help and support women.

The idea is that it’s a resource that people can come back to. We want to ensure that we have a resource that women can refer to at the drop of a hat because we have a lot of women coming to us asking for advice or direction and we want to ensure we are able to support them.

One thing that has become clear as Black Women Rising has grown is that when a large group of women come together and talk about our experiences of cancer, we’re finding that we have similar side effects. That’s a huge thing that people to know because cancer can be so isolating.

It’s so important. I remember my surgeon showing me a book of photos of women who had had surgery to help me to understand what my outcome might be like. All of whom were lovely and gorgeous but he was trying to give me an idea of what my body might look like after surgery but I was 24 and all of these women were about 20 to 30 years older than me. I found that quite isolating at the time. I think it’s so powerful having a resource where women are able to see other women like them.

And it’s so interesting having conversations with women and finding that you have shared experiences that perhaps we’ve never discussed in any medical capacity. I’m so passionate about women not having to feel shamed, and alone and isolated like you did. It breaks my heart thinking about it.

Same. Just the same!

The other things that comes across in a lot of what you’ve done is that there are so many aspects of cancer treatment that are not necessarily talked about much while going through treatment. For example, I’ve spoken to women who have gone through their treatment or preventative surgery and get to the end and it’s almost like they’re just released and there are so many aspects of recovery that aren’t necessarily picked up elsewhere. So I noticed, for example, that a lot of your blogs were about your femininity and about the relationship you had with your femininity. Is that one of the things that made you think about doing the photo series “Black Women Rising – Untold Stories”?

Yes, of course. Because breast cancer robs you of everything that society would say makes you a woman. You lose part of your breasts, like I lost both my breasts. I did have reconstruction but in a way that doesn’t matter because I know they’re not my own. And you lose your hair and your eyelashes. So much is stripped away.

My body has never been the same since I had cancer. Because of the surgery I had, my pec muscles are above my implants. I’ve got my arm strength back but I will never be able to do the stuff I did before. I don’t have the physical capacity to go that hardcore any more. I don’t even have the brain capacity some days!

My body has changed but I have a better sense of self than I did before. I’m more secure than I was before. But at the same time, I am able to put myself to one side and do these campaigns because I want to normalise different bodies. First of all to normalise bodies of different sizes and say it doesn’t matter what size you are. It doesn’t matter what you’ve been through. You can still look lovely, sexy and glamorous. I love it. I’m proud of my body and what it’s done. And I’m proud to represent my women.

I’m a girly girl. I’ve always loved dressing up and being glamorous. Why should we stop that after cancer? We need to feel good!

Sex and intimacy is a huge topic that is coming out of the wood work when I speak to women. Because women are struggling because they don’t feel good.

So “Black Women Rising – Untold Stories” really had two purposes. It was aimed at spreading awareness of breast cancer amongst the BAME community. It was and is very clear to me that a lot of work needs to be done to get more visibility for BAME cancer patients.

But just as importantly, that series of those photos was for the women themselves. It wasn’t just about showing people. It was also about the women. Most of those women cried when they first saw their pictures because that was the first time they’d seen what their bodies looked like. So many of their first reactions were self-critical; “I’ve put on weight”, “I look fat”, “this isn’t right”.

This is what I’m about – making people feel better.

I think as we go through treatment we become very accustomed in some respects to showing our bodies. I was thinking about the medical photography I’ve had and the MRIs and so on. And you’re used to people seeing and prodding your body. But, on the other hand, there’s this need to feel yourself again and to reclaim your body and feel feminine again whatever that means to you.

So true. I’m 3 years cancer free now and one of the things I’ve been thinking about recently is the amount I’ve criticised my body. That criticism hasn’t changed my body in any way.

It’s so tempting to come out of cancer treatment and try to chase certain ideas of what constitutes beauty. You hit the gym, go to the hairdressers etc…. I don’t think those are the things that make you beautiful.

For me it was about going really deep within and finding self-acceptance. Because if you sit and compare yourself to how society thinks we should be happiness is just not going to happen. Because we’re not that. For me it was more about digging deeper within.

Some of the times I’ve felt most beautiful have been post cancer. Don’t get me wrong, I have my ups and downs but some of the most beautiful moments I’ve had have been post cancer because of that self acceptance and being happy with how I am and being thankful for my body and just accepting things for what they are. Having said that, it’s a really difficult path to get there.

When I got the all clear, I threw myself into changing my diet and going to the gym and chasing that idea of what I should be and look like. What did I do? I gave myself a hernia!

We feel like it’s so external but it’s not. It’s internal. You’ve got to dig deep.

Which leads me neatly to your “Positive Day Planner” which you’ve recently launched.

I put that together after cancer. I’ve always written journals. I have hundreds and hundreds of notebooks and journals.

I used to have many notebooks that I wrote different things in and I found I just needed a “one stop shop” to record all the things that helped me through the day. Things like gratitude, writing down hopes and wishes for the future, planning the day ahead, having a breather before the day started to settle some of the anxieties. But also, at the end of the day, thinking what really helped? What was great today?

So I created the Positive Day Planner. I just made it by hand to begin with and photocopied the pages as an insert for my own journal. And then I realised that I was kind of giving this information to people anyway so I thought I would create a useful tool that people could use.

I found the printer and the distributer and did a massive photoshoot so I was ready to launch. And then we went in to lockdown! I was planning to release it in March and had booked some talks and a venue for the launch. I held off releasing it to begin with but I launched at the end of June because the time felt right.

It’s a 21 day planner. A place where you can create your own happiness. Because we are in control of that.

The exercises I designed for the planner really helped me after cancer. I feel that as a society we look externally so much for validation. A lot of unhappiness seems to boil down to looking for happiness outside ourselves. But happiness comes from within. The planner has really helped me to centre myself every day and I wanted to share that with other people.

You obviously have a lot of plates you are spinning and you give so much of yourself in terms of sharing your story and supporting others, how do you make sure you’re looking after you and not giving everything?

Gratitude, prayer, yoga. I do a lot of centring. I do my own daily spiritual practice to check in with myself. These are the tools I revert back to all the time, including the tools in the Positive Day Planner. I make time. If it doesn’t get done, it will get done tomorrow. It’s ok to take your time. I think cancer was really good at showing me that.

Thank you so much, Leanne for taking the time to speak with me and sharing your amazing story.

If you’d like to find out more about any of the things Leanne and I have spoken about today, you can find out more here:

@leanneperoofficial

@blackwomenrisinguk

@thepositivedayplanner www.thepositivedayplanner.com

Introducing Susan; a proud breast cancer previvor

Wonderful Susan (@lookatsusie)

It’s a beautiful, sunny summer’s day here in Norfolk. You know what makes it even better? It’s time to introduce our next guest blog!

We’re delighted to introduce Susan. Susan is a digital communications professional and carries the BRCA2 gene.   

She had a preventative double mastectomy with direct to implant, under the muscle reconstruction in December 2017 which makes her a proud breast cancer previvor.

Having had successfully coached herself to prepare for this surgery she is now working towards a Life Coaching diploma with a view to help people tackle their goals and improve their lives through the life changing magic of coaching. 

You can find her on Instagram as @lookatsusie (as lookatsusan was already taken!).   

Susan believes that mental health is equally important as physical health and just because she’s lost her breast tissue it doesn’t mean she’s lost her sense of humour. 

After three knee surgeries in the last four years one of her goals is to strengthen her knee and leg enough so she can run every day…to catch her bus. 

Without further ado, let’s hear from Susan!

“It was May 2013 when Angelina Jolie announced that she was a carrier of the BRCA1 gene mutation. She stated that this had given her a 87% chance of breast cancer and on the back of that knowledge, had made the decision to have a preventative bi-lateral mastectomy. 

Back in May 2013 I was still five months away from receiving the results of my own blood test for the BRCA2 mutation.  When I read her announcement and brave surgical decision, I remember thinking that Angelina was such a perfect ambassador for BRCA awareness and breast cancer prevention. To me she represented beauty, femininity and, above all, strength.  I thought that if my results showed that I carried the mutated gene, then I would be proud to be associated with her. 

You see, two years prior to Angelina’s announcement I had begun pursuing genetic testing as I became increasing aware of the prevalence of breast cancer on my dad’s side of the family. My dad’s mum had breast cancer. As did his sister (three times no less), his aunty and his female cousin. That’s a lot of breast cancer to consider. 

Because of this niggling family history, I found myself broaching the subject with a practice nurse during a routine pill check in the spring of 2011. It was a sort of ‘by-the-by” kind of thing. I hadn’t previously discussed my growing concerns with anyone, not with my then partner, nor with my family or friends. To be brutally honest I wasn’t even sure what to ask… 

*deep breath*   

“There’s a lot of breast cancer in my family..” I began. 

“What side is it on?” 

“Mainly my dad’s.”  

“It doesn’t come down the father’s side” I was told by the nurse. Dismissed. Case closed.  

Months later I tried again. Another pill check. Another practice nurse. Again, I told them about my family history of breast cancer. 

“It doesn’t come down the father’s side”, I was told again. 

I wasn’t taking no for answer this time.  

“It’s on my mum’s side too.” I pressed, determined not to be fobbed off this time.  This was true, my mum’s sister had finished her treatment for breast cancer and was still being closely monitored. So, on the back of it being present on both sides of my family, the nurse (I have to admit, somewhat reluctantly) referred me for genetic testing. 

For this genetic testing meeting I was asked to bring in a family tree with the types of cancer my relatives had developed and the age they got it.  After the consultant looked at my family history, he confirmed that due to the breast cancer history on my dad’s side, it did suggest that hereditary breast cancer ran in my family.  To be certain I would have to have to have a blood test. Before that I would have to have genetic counselling so I was aware of the impact on my life should my test came back positive.   

I had my genetic counselling and blood taken in October 2011. However, before it could be tested for the gene, a geneticist from my team explained that my breast cancer surviving aunty (my dad’s sister) had to have her blood tested first. This was to try and identify a mutation in her DNA. It’s like being given a book and looking through it to find a spelling mistake. Once you find a spelling mistake in that book, you know what you’re looking for and it’s easier finding it in other books.  The other ‘books’ being my dad and myself. 

Thanks to the complexities of the NHS and the difference of BRCA testing criteria between NHS areas it took a long time to get confirmation. My auntie’s genetic team in the North East had a stricter testing criteria than my team in London and were very reluctant to test her. In fact they initially flat out refused. It took some lobbying on my part to push this along.  I say lobbying, I simply told my softly spoken geneticist in no uncertain terms, to Make This Happen. I had gotten this far into the process, I certainly wasn’t stopping now. To his credit and to with my undying gratitude, he made a passionate case for me, pointing out that my auntie had had breast cancer three times, and so they agreed to test her. 

So, after waiting a painfully long year to find out that my auntie carried the mutated BRCA2 gene it was my dad’s turn to get his blood tested. He had the same spelling mistake. Then it was finally (finally!) my turn. After two very long years of waiting, somewhat bizarrely to the very day, I finally got my results in October 2013. 

Being BRCA2 positive with my genetic variant (there are hundreds of known variants) put my risk of getting breast cancer somewhere between 70%-80%. Not as high as Angelina as the BRCA2 mutation carries less risk, but still very high. All things considered I think I took this news on the chin, as soon as my dad told me he had the gene I kind of knew deep down that I had it as I don’t physically take after my mum. I only cried that day because Billy Elliot is a very emotional musical. Honest 😉 

I was immediately put under yearly MRI monitoring. At first, I was fine with just monitoring. Cutting off my healthy breasts felt counter intuitive and unnecessary. However, after my second MRI scan in January 2015 I had had enough. Scanxiety is a real thing l and I kept reminding myself of how high my risk was. I was fed up wondering after every scan if this was the year I would get breast cancer. I decided it was no way to live. 

Reader, I chose to have a preventative bi-lateral mastectomy. 

I had this preventative bi-lateral mastectomy with immediate reconstruction in December 2017.  Was this an easy decision to make? Hell, no. Was the recovery difficult? God yes – more difficult than I imagined, both physically and emotionally. It’s a weird grieving process. It’s traumatic. It’s painful. It’s effectively an elective amputation which I stupidly tried to minimise because I didn’t have breast cancer. 

Am I glad that I had it done? 100% yes. I no longer have the threat of breast cancer hanging over my head. My risk has been reduced from 80% down to somewhere around 5%. Hooray!   

Not only do I no longer worry about getting breast cancer; aesthetically, I’m very happy too. I had a direct to implant reconstruction, placed partially under the muscle.  I had a boudoir style photo shoot before my surgery to help me say ‘goodbye’ to the girls. Not only did this help me to emotionally prepare for my upcoming physical change, it also gave me an opportunity to compare my breasts as to how they used to be. Looking back, I genuinely think they look better now post-surgery. Thanks to my clever surgeons I managed to keep my nipples and I’m roughly the same size; both of which I’m thankful for. I didn’t want to feel as if I would be losing anything from having this annoying mutation.   

I now have more headspace. I may not have had breast cancer, however just like having breast cancer, my life was effectively put on pause and everything revolved around hospital appointments and surgery consultations. It’s no exaggeration that it took over my life for many years. I was mono focussed – reading, researching and making decisions. Literally everything I did in the year leading up to my surgery date was to help me prepare for it.  Work was something I did to pay the bills and I wasn’t even considering a new relationship.  

Having a BRCA mutation does focus the mind, at the least the thought of having it definitely did. I broke up with my ex-partner in 2011 soon after I had my genetic counselling and gave my blood sample. It wasn’t the reason we broke up, however I believe it was a factor. The thought of spending the rest of my life with someone who moaned when I had a cold wasn’t really appealing.  If they couldn’t care for me when I had a virus for a week (Susan, I’m playing a game), what would they be like if I had cancer? I imagine probably a bit sh*t. 

Actually, it’s only just having written this that I’ve realised I’ve cut out some unhelpful people in my life (as well as cutting out unhelpful breasts) as part of this journey.  

Reflecting back, I’ve definitely learnt a lot about myself. I had many ladies said to me that they couldn’t do what I have done. And once, years ago, I’m sure I felt like that too. However, I no longer remember that person. I’ve come to realise that people are stronger than they believe themselves to be.  

More specifically, I am more stronger than I believed myself to be. 

No one wants to become a member of the preventative mastectomy club; however, I’ve discovered there are definite upsides in joining the ranks. Not only have I futureproofed myself against breast cancer (I secretly call myself Susan 2.0 now) and can crack on with my life, I’m proud to part of a group of people who have had to make these difficult choices.  

We are bold. We have courage and we can definitely do hard things. “

Thank you so much for your blog, Susan. So much of it resonated with us here at Valiant HQ. We love the idea of Susan 2.0 and we totally agree; we are bold and courageous and we can do hard things!