We’re super excited about today’s amazing guest blogger. We’re delighted to introduce you to Danielle. Danielle was diagnosed with HER2+ breast cancer in 2018 and, only a week later, she discovered that the cancer had spread to her liver. Danielle says lives in Kent with her husband, Tim, and their adorable daughter, Joey. She says that she does’t let her disease define her; she uses it as her motivation to live every day to the fullest with her wonderful family. You can find Danielle @raising_joey where she talks about all aspects of living with incurable cancer.
In addition to sharing her own story on social media, Danielle is also one of the co-founders of @metastatic_mammas
Here’s Danielle’s story:
“Since being diagnosed with stage IV breast cancer in November 2018 aged 29, life has taken some weird and wonderful turns as well as some pretty heartbreaking and terrifying ones too.
After picking myself up off the floor for the sake of my 6 month old daughter at the time, I decided that I wanted to be a part of the changing narrative that is life with terminal cancer.
When I first heard that my breast cancer was incurable I was in complete despair. I searched high and low on the internet for stories of survival from other women with the same diagnosis. However, I couldn’t find any.
What I did find was a whole host of ladies (and men) with all different types of cancers and they were all LIVING well with their disease.
I realised that I had to make this journey of mine through life, albeit a completely different one from what I had planned, a story that my daughter would be proud of.
I stopped moping around and started taking action. I had 6 rounds of chemotherapy as well as 2 continuous targeted therapy drugs, Herceptin and Pertuzumab that I still have now every 3 weeks. Whilst on chemo I decided that I wanted to raise money for cancer research by running 10k for Race for Life. I managed to get a group of us together and collectively we raised £6000. From there a fire was lit in me to keep sharing my story and keep raising money as my own defence against cancer.
I decided to apply to be the subject of a campaign called ‘The Worlds Most Precious Stone’ and actually got the part. A film crew from Paris followed my hairloss journey and made a lock of my hair into a yellow 1.59carat diamond to symbolise hope, strength and light. A parisian jewellery designer then created it into a diamond necklace that was on display in The Cancer Centre for Immunology in Southampton Hospital for breast cancer awareness month in October 2019. The film was shown on billboards in Times Square and online and managed to raise over £11,000. The diamond necklace was given to me to pass on to my daughter Joey.
Since then, I have had many opportunites to tell my story and raise even more funds for charity including on my own social media where I tell all sides of the story about life with incurable cancer; the good, the bad and the ugly. I proudly raised over £2,000 during the UK lockdown by running a marathon in my living room; it took 8 hours and over 66,000 steps but I wanted to show the world that even in times of complete uncertainty, anything is possible.
I receive messages everyday from young women telling me they are now more aware of their own bodies and actually check for changes in their breasts which I am so pleased to see.
However, the best messages I receive are from newly diagnosed cancer patients who have found my story and felt some hope that there can be life; a beautiful, happy life, for them too despite living with this cruel disease.
For anyone diagnosed with cancer there are really scary times, extremely tough days and complete uncertainty about the future. But they are all of the things that are out of our control. All of the beauty we find in life after the diagnosis, all the drive to make a difference, all the love we have for the simplest things and the happiness we find just to be here; they are all choices. We cannot control cancer… but cancer cannot control us either.”
Thank you so much for sharing your story with us, Danielle. You inspire us every day!
This week seems to be rushing by in such a blur! It’s Wednesday already and that means it’s time to introduce another of our wonderful guest bloggers. Today we’re thrilled to have a blog from the lovely Mandy (@mrsachard).
Normally at this stage we would include a little bio to get to know our blogger a bit better but Mandy has introduced herself so well that we’ll get straight to it!
Without further ado, here’s Mandy:
“Hi I’m Mandy, 42 year old mother of two boys (12 & 9), wife to Aaron, a Chartered Surveyor by profession but a History & Art nerd in my spare time. I’ve also recently taken up a lot more walking due to the fact that like my fellow Valiant Lingerie guest blogger Laura I’m taking on the 100km Sahara Desert Trek for the charity Coppafeel, which has now been moved to March 2021 – phew – more time to train!
What’s the reason for taking on such a massive challenge you may well ask! Well, it’s simple really – I’m a cancer survivor when there are so many who haven’t been as lucky so I want to do everything I can, not just to spread a positive post cancer message but also get the word out there about how fundamental it is to know your body, regularly check and get any changes looked at straight away.
I was diagnosed with Mucinous Carcinoma (MC) in August 2016, just after my 39th Birthday. I’d found a marble sized lump which was also causing an achy pain in my left armpit. MC is rare being found in approx. only 2% of breast cancer diagnosis. I was somewhat reassured when my surgeon initially told me that MC is generally “well behaved” and slow growing.
Unfortunately the MC which had taken up residence in my left breast was clearly going through a rebellious phase, further tests revealed it was behaving far more aggressively than expected and it had already spread into one of my lymph nodes, hence the lump in my armpit.
I underwent a left side skin and nipple sparing mastectomy with axillary lymph node clearance and immediate implant and latissimus dorsi muscle reconstruction. This was followed by 4 months of chemotherapy, 3 weeks of radiotherapy and tamoxifen for 10 years. In Nov 2018 I went under the knife again to have a mastopexy and implant on the right-hand side for symmetry.
Whilst it may sound strange, I found the active treatment phase possibly the easiest to deal with. Whilst there are dark and scary times, you simply don’t have time to dwell on them because you have a schedule of treatments and appointments getting you through day to day, week to week and you are surrounded by a safety net of health professionals with you every step of the way. I look back and 2016/2017 memories are a drug addled haze, of course I wouldn’t wish any of it on my worst enemy, but you have no option but to crack on and get through it.
I chose writing as an outlet once I’d finished chemo, I started a Facebook blog “The Full Chard” as a way of trying to find my way back to my old self. I wasn’t sure how that was going to turn out, but the writing was cathartic, I found humour in a lot of what I’d been through and I wanted to share something of my experience with others.
Far more difficult was the aftermath. I remember thinking at my last radiotherapy appointment when I was taken into a side room afterwards and effectively “cut loose” until my 6 month check-up “what now”?
Suddenly, that safety net you’ve known for the best part of a year is gone and whether intentional or not, the expectation from everyone around you is that you should be ecstatic, happy and looking forward to getting back to “normal”…….whatever that is. I tried, I really did, I didn’t want to let anyone down, I was back at work 2 weeks after my last radiotherapy session, back doing school runs, still writing funny anecdotes on my blog. I managed 6 months but during that time my mental health deteriorated pretty badly. When I read my blog back now, its fairly obvious things weren’t quite right for quite a while. It took a long time to ask for the help I knew I needed. Ultimately I was suffering with PTSD, my self-worth was lower than in my boots, I was having suicidal thoughts – yes even I found that ironic when I considered how determined I was to beat the cancer during treatment. I felt so alone but later discovered it is incredibly common to feel that way after treatment. That made me wonder why more women aren’t warned about the potential for it earlier on during active treatment so it doesn’t come as quite so much as a shock.
My mental state wasn’t helped when early on in my attempts to “get back to normal” I went shopping for new bras with my mother in law. The experience resulted in something of a rant on my blog.
I had to dispose of all my bras following my surgery because it’s not advisable to wear ones with underwire and all my pre-cancer bras were underwired. I had since been living in a handful of support crop tops and a post mastectomy bra from M&S which while perfectly fine practically weren’t exactly floating mine or my hubby’s boat.
I didn’t strictly need a post-surgery bra because I didn’t have prosthetics or knitted knockers to put in the pockets provided. My requirements, a non-underwired but supportive with a bit of padding and ideally something pretty, perhaps satiny or lacy, to make a relatively young women look and feel desirable you might think would be straightforward.
How wrong was I! I couldn’t find a single thing that didn’t resemble the kind of boulder holder you imagine you might be wearing when you’re also putting your false teeth in a glass by your bed – not the kind of look I wanted. Other than that, it was your very average, very plain T shirt bra, no lace, satin or anything remotely pretty to be seen. There were a few nice lacy bralets but they had no padding or support of any kind.
The issue I had was that I was pre my symmetry surgery at the time. The naughty boob which tried to kill me had gone and its replacement needed no help what-so-ever, she was as perky as you like. She would have looked fabulous in a cheeky little bralet. The one that didn’t try to kill me however, bless her, was descending further and further towards my belly button every day so she needed quite a lot of extra help in the form of moulding or padding to compete with her new friend next door.
I went in so many stores and looked online and there was nothing, not a thing that I would consider remotely close to what would make me feel confident and comfortable and I just couldn’t understand why. In every single store I went in I explained what I was looking for and why, in one, I was offered a bikini as an alternative. In another it was suggested that I could choose to ignore the medical advice I’d been given and just wear underwired anyway! I felt myself getting upset and had to leave.
What you might consider a relatively minor issue I suppose actually resulted in something of an epiphany, not in a wholly good way at the time, I came to the conclusion that with the best will in the world, normal, or at least most people’s experience of something normal like buying a bra was not something I could aspire to anymore. My boobs didn’t conform to what the bra makers deemed to be their “market”, not only that but I couldn’t and didn’t want to conform to everyone else’s idea of what I should be feeling or thinking.
It was a defining moment in my recovery, I learned that my old “normal” wasn’t…….couldn’t be where I was headed. As you can imagine that was incredibly scary and found myself going through a grieving process for the old “me”. But I knew I had to let her go and accept I wouldn’t find her again, however hard I looked.
What I can say now, however hard that period of my life was, I am all the better for it now. It has taken a lot of time, pain, heartache, intensely feeling my way to who I am now (by no means the finished product…….but are any of us?). It may sound strange but I am grateful to cancer and I really quite like who I am now. In some ways I am more tolerant, I no longer sweat the small stuff, in others I am less so, not a bad balance to strike in my opinion. I appreciate so much more than I did before, I am more selfish when it comes to self-care and ensuring my needs are met (usually with a bit of quiet and a good book) but my deep desire to help others who may find themselves in the same position is strong and empowering.
Where my boobs are concerned, following my symmetry surgery my right girl doesn’t need quite as much help as she did, she’s by no means perfectly symmetrical with her sister on the left, in fact she’s now quite a bit bigger since they didn’t take any breast tissue out of that side. I am still however, searching for a bra that does the job my old bra’s used to and I’m so excited to see what Ellie and her team are beavering away to produce.”
Thank you, Mandy, for sharing your wonderful writing with us all. We suspect Mandy’s experiences and feelings of being “cut loose” after treatment will feel familiar to many.
And how many of us recognise Mandy’s experiences of bra hunting after surgery?! Raise your hand if you’ve ever felt personally victimised by bland, unflattering post-surgery lingerie! Not for much longer!
We have another amazing guest blogger today. We’re honoured to introduce Joanne. Joanne documents her experiences living with secondary breast cancer on Instagram. You can find her at @reallyratherannoying.
Like so many in the cancer community, Joanne has spent much of this year shielding and she has documented her feelings throughout – on the good days and the bad.
Joanne has written a wonderful blog for us today in which she explains what it is like living with cancer in a time of coronavirus and what that has meant for her.
We hope you find Joanne’s blog as powerful as we did. We know that this year has been very difficult for so many but Joanne has so beautifully expressed the fear and uncertainty of so many brave people in this cancer community. Here’s what Joanne has written:
“I swear a lot these days. I didn’t used to but now all the time in my head and too often in my speech. I grew up in a house where no one swore, the first time I said sh*t I was ten, I didn’t know what it meant I’d heard someone at school say it so I thought I’d try it out. My mum was horrified, I cried, I never swore again until just recently. I blame cancer……and coronavirus.
I’ve had cancer for three years, well probably longer but undetected. Secondary or metastatic breast cancer, that’s were the cancer has spread from the breast to other parts of the body. Mine is in my bones and stomach lining. Because of the nature of my cancer I’m able to take a reasonably new drug called Palbociclib. I’m lucky it’s worked for three years with relatively few side effects and I’ve led a relatively normal life. I’ve seen my two children graduate and hopefully next year my step daughter, I’ve got married, travelled to Europe, Africa, Asia and Australia. I’d probably have been to the USA too if they didn’t have that overly weird president. Life was, well not great let’s face it who wants uncurable cancer but it was as good as I could make it.
Then something happened in China that turned mine and, too be fair, the whole worlds’ lives upside down. Coronavirus, Covid-19, call it what you will it’s a damn nuisance.
In April as the whole country was in lockdown I sat by the phone nervously waiting for the results of my latest CT scan. Would the cancer still be stable? I’d already outsmarted the average time on Palbociclib so every three months the wait for results became increasingly anxious.
The call came in, still stable BUT….It was a big but, the breast team, having reviewed my medication and general health in the wake of the global pandemic, decided that I should take a three month break from the medication. They had weighed up the odds and given my propensity to low white blood cells agreed that the risk of my cancer growing was less then the risk of my catching and recovering from coronavirus. I was devastated and extremely nervous, feeling I was being asked to put my three years of stability and hope at risk but what could I do?
Reluctantly I agreed, treatment was paused and I started on a new regime of taking Letrozole, my other cancer drug, alone and just hoping I would stay safe. Two weeks later my worst fears were realised as I started to get severe pains in my right hip and pelvis. Over the next couple of days the pains became increasingly bad, I could no longer sit comfortably or indeed walk.
I rang the Christie hotline and minutes later was taken by ambulance to my local A&E, not exactly were you would choose to go in a global pandemic with a compromised immune system. I was admitted onto a ward for investigation without a coronavirus test, that didn’t seem right but when I queried it I was told by the ward nurses if I didn’t get one in A&E they wouldn’t be giving me one – WOW. I just hoped no one else on the ward had it.
For two days I had scans and X-rays , checking for spinal compression or broken bones but nothing appeared out of the ordinary, apart from the pain which was managed to a reasonable level by my old friend morphine. With no visitors allowed the only possibility of banter was with the nurses, too busy chatting about tik tok, the patients, too old to hear me or the people delivering the food, who claimed tuna bake was suitable for vegetarians. Thank goodness I’d had the foresight to pack my kindle and phone charger!
The tests revealed nothing untoward so I was released back home with a bottle of morphine and absolutely no idea where that pain had come from.
For days nothing changed still sore, couldn’t walk properly, couldn’t sleep and the morphine made me so miserable I was swapped onto a synthetic alternative.
I madly researched what it could be. Then I read stories of ladies having terrible joint pain on Letrozole, could this be the cause of my issue? Was the Palbociclib masking these unwanted side effects?
Turns out there are a number of different brands of Letrozole, ranging from the current ones I was taking at £2 a packet to the crème de la crème at £90.
My wonderful GP listened to my reasoning and agreed to prescribe the crème de la crème and the results were surprising, over the next few days the pain subsided walking became easier, all be it at first with a stick and I started to sleep.
I had another CT scan and waited anxiously for the results, hoping for the best but fearing the worst. The results came via phone call, I was still stable, I could barely believe it and better still could start back on my Palbociclib and even better I could slowly come out of shielding and start to meet with friends and family I’d not seen for four months.
Life was great for sixteen hours. Then my daughter texted me, the virus cases in Greater Manchester were rising to a dangerous level we were being told to stop socialising in our homes and even our gardens. What the hell? I’d not even got to that yet, the news was devastating, hopes of slow return to the “new normal” dashed. You could not make this year up!
But as I sit here today on a chilly bank holiday weekend we have been released from these extra restrictions and by Wednesday will able to have friends round again albeit under the social distance rules. I’ve survived those horrible three months, but who knows at what long term cost to my health? Many who’s cancer treatment was paused or diagnosis delayed face an uncertain future, many cancer patients will die needlessly as a result of the restrictions of the pandemic. As we all move towards our new normal let’s not forget those who have suffered and continue to do so.
Follow me on Instagram @reallyratherannoying because let’s face it that’s what life with cancer is.”
Thank you, Joanne, for sharing your story and explaining the far reaching impact of coronavirus on so very many lives.
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.
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.
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.
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: