Today's guest blogger is wonderful Norrell who is a 34 year-old professional musical theatre actress currently living in Chicago, Illinois in the United States with her fiancé Joe and their cat, Chairman Meow. [Is this not the best cat name ever?!]
Norrell says that her biggest passions are singing, meditation, dancing, and snacking on hearts of palm.
Norrell was diagnosed with Stage 1 invasive ductal carcinoma in 2016 at the age of 30 and she is now a passionate advocate for early detection -as she says, #dontwaitinvestigate.
You can find Norrell on Instagram @norelimoo.
Here's Norrell's story:
"Whoa. It's four years this November since my diagnosis... isn't it funny how much we hang on to numbers? These milestone markers. A pause and a breath in remembrance. I was 30 when I learned I had invasive ductal carcinoma. Breast cancer. Stage 1. For me, this was both frightening and yet, powerful news. Let me explain.
I have a cousin who had Stage 3 breast cancer and she was diagnosed at the young age of 28. It scared the SHIT out of me, honestly; me being 23 years old at the time. She came out on the other side! I admired her power and motivated spirit to fight what too many women must fight in this world. My main take away? CHECK. YOUR. SELF. Fast-forward seven years later to 2016 and something just... isn't right. There's no pain, but there's definitely a lump. Hmmmmmm.
I am a fairly optimistic and balanced person, or at least I like to believe I am; to constantly keep going with whatever the flow may throw. I am a Pisces, after all. I didn't want to make a big deal out of this if there wasn't any need, so I just “kept an eye on it” for two months before I even mentioned it to my fiancé, Joe.
Sooo this lump, huh? Still here? Cool cool cool. Mind you, I was an uninsured actor/musical theatre performer (like so many in my field) and had many gigs that year. I was also working two restaurant jobs, performing in a musical, and singing in a couple of bands. I've always had the tendency to run myself until empty. I also had my very first car accident that year... something was UP and I could FEEL it.
That August, we lost our dear neighbor to gallbladder cancer. 42 years old . He left behind his two little girls and loving wife. It made me ponder my own situation. I had no healthcare and the costs were already starting to pile up in my head if, in fact, the unknown was to be confirmed. The not knowing was eating me alive. “Knowledge is POWER”, I thought. With more knowledge, I get to keep the control and do what is absolutely necessary for me to stay alive.
Little by little I went through the routine tests (breast exam, mammogram, and biopsy) to learn of my diagnosis in November of 2016. *Deep inhale, deep exhale.* What a year! But, let me tell you about my ride-or-die partner, Joe. He made phone calls for four days to get me insured by January 2017. He set appointment dates for me when I just didn't have the energy to makes those calls myself. He took point. Something he has always done, but this level of love was something I never could dream I would find in a partner. He's a spectacular human and loves me to no end. Talk about lucky.
I was overwhelmed by the amount of support, both emotional and monetary, that poured out from family and friends in my home state of Pennsylvania as well as my theatre fam in Denver, CO. A GoFundMe was started by my now sister-in-law and The Denver Actors Fund had raised over $4,000 to help with medical bills. Having so many people in my corner made my fight less scary.
Once 2017 hit, it was ON and I was in attack mode. The ninth of January, I went in for my first ever MRI. When the test results came back they had determined that another lump had been growing. I now have two tumors growing inside of me. I was shocked, but not shaken. We still had work to do and I had a laser focus on the situation.
Genetic testing followed and we learned even more... my cancer was not hereditary. A “gene of insignificant variance” my doctors called it. The doctors recommended a good-old-fashioned lumpectomy: remove the tumors, salvage the nipple, deal with a deformed “breasticle”. I was not convinced... I needed to do more research and I needed to talk to more women.
That was the key. I talked to mothers, daughters, friends, breast cancer survivors and I asked “What would you do in my position? What do you wish you had done differently?”.
I remember speaking with an Aunt about my grandmother's breast cancer journey. She got her diagnosis towards the end of her life and opted for the lumpectomy, but the cancer returned. I didn't want to hear the word cancer again. I wanted to be FINISHED with this life-altering event. I started to pivot my decision towards a bilateral mastectomy. My man put it very simply. “Your breasts are trying to kill you.” He was absolutely right.
We continued our discussions with my doctors and one month later from the date of my MRI, I went in for my surgery to remove everything; nipple and all with reconstruction surgery on the horizon. Pathology reports came back and we learned that a THIRD mass was beginning to grow. Boy, did I feel good about my decision to cut it all out. Something we were not ready to hear from my oncologist was radiation and chemotherapy. I was pissed.
I didn't understand how I could only be Stage 1, had the mastectomy, and still have to go through nearly 14 rounds of chemo treatment. After more tests were completed on my tumors and finding the most amazing oncology team at Rocky Mountain Cancer Center, we were told I would only have to do 4 rounds of chemo and no radiation. What a relief!
My body handled chemotherapy well with little side effects. Queasy at times, hot flashes, and the loss of my upper singing register for a spell. I had been previously cast in another musical and went into rehearsal three weeks after my initial surgery. I needed theatre to get me through this real-life drama I was living and I was so grateful for that opportunity.
And of course, the hair loss. Honestly, I felt like a badass for the majority of the time. I learned how to wrap luxurious headscarves around my perfectly round dome or just rock the bald. There were stares and it got me down at times, but I kept smiling and shining my light! Once chemo was complete, I got a new pair of boobs! Chemotherapy had been the only thing on my brain that I had almost forgotten about my implant surgery. I had been at this for 6 months and I was exhausted by July. That recovery was definitely the hardest thing of all. Life after cancer now consists of a ten-year regimen of Tamoxifen, routine check-ups, and checking for lumps STILL.
I did something just for me a couple years post-op, too, that is my most spiritual life event to date. Back when I decided to remove my nipple the thought of a tattoo came to mind. I didn't want a nipple tattoo, though. I wanted something fun; just plain badass. Scars are beautiful and I was ok with mine... I just needed a different way to honor what I had gone through. I searched the web for mastectomy tattoos. I wanted to do something either simple and elegant or humorous. The idea I was able to brew up with my close friend and tattoo artist, George Munoz, was both.
The idea that made me smile and laugh the most was when I recalled the first Austin Powers movie. I always enjoyed the scene where the fembots came out to the tune of “These Boots Are Made For Walkin'”.. all blonde. All in silver lame. No one could resist their charm! And then all of sudden, a gun barrel shoots out from the bra and starts firing at their target. BAD. ASS. My tat is a combo of the gun barrels (smoke still rising from one), peonies, and a mandala formed by intricate dot work.
The reason this day was so spectacular is that I was able to get this 11 hour tattoo in front of thousands at a tattoo convention. Not only was it special for me, but it was also the very first mastectomy tattoo that my good friend, George, was creating. Both of our significant others were there to support and witness. It was magical. I was able to talk with complete strangers and a lot of women about my journey. In turn, they were sharing their story with me. Tattoos mean so much to individuals because more times than not, there's a meaningful story behind it. By sharing my experience in public, I was able to give other breast cancer survivors the confidence and nudge to get their own “badge of honor”.
It's amazing what news like cancer can do to really shift your perspective. Our time on this Earth is never promised. This quite daunting news was in reality a life course in how important slowing down and taking pause to listen to your body can be. It made me reevaluate the ways in which I show up for others, and more importantly, myself, every day. It really was an experience of reacting and turning inward like never before.
I had some rad chemo conversations with myself! I found clarity in my meditation practice. I danced by myself A LOT like I did when I was a kid; making up dances in the dining room. Cancer cracked me open in ways that I can't explain. To anyone who may take a similar journey, my hope for you is that you take this shitty news and turn it into the biggest torch; the brightest light that has always lied within you."
Thank you so much for sharing with us today, Norrell. We feel so honoured to share your story.
Today we feel incredibly fortunate to be able to introduce you to the wonderful Katie who you may also known as @kates_cleavage. Katie is an English teacher and writer from Hertfordshire in the UK. Last year she was diagnosed with secondary breast cancer (with mets in her left hip) and now, in her own words, she is navigating stage 4 breast cancer at the age of 30.
We hope you enjoy Katie's blog as much as we have. We're sure you'll agree that it so beautifully expresses those complex emotions that we know will be (sadly) so familiar to so many women in this community.
The Big Bad: Recurrence and Life Beyond It
"I want to start by sharing an excerpt from the memoir I penned during my primary diagnosis at twenty-one. I wrote over 40,000 words during my treatment; it was a means of navigating the unknown, of making sense of the changes I was experiencing. The last thing I penned, before abandoning the project for living beyond cancer, is below:
‘Fear pulsates through my temples, pressing hard against my skull, urging my thoughts to enter my brain at a much faster pace than I would like. Here in the breast clinic waiting room at the University College London Macmillan Cancer centre I find myself repeating the same question repeatedly to myself and to my nervous father sitting next to me: what do I do if it has come back? I am wondering if my cells have begun again to fiendishly tangle together, like a pair of messy shoelaces, forming that suffocating mass inside my breast. Over the past year, I have experienced a multitude of phantom aches and pains. At one point, I went to my oncologist with a persistent tenderness in my ribs that an ultrasound deemed entirely fabricated by my fanciful imagination. On another occasion, I became entirely obsessed with a supposed swelling in my abdomen, which again did not prove to be a massive tumour crawling like poison ivy through my intestines. This is the nature of the fear that I am sentenced to live with for the rest of my life. The inconsolable fear of reoccurrence is enough to tempt you into putting an end to contemplations of a happy future. My fear is not especially unique, from reading other women’s blogs I have noted a serial trend in those entries made as soon as the wheels of remission start gaining motion. We ‘survivors’ make it our business to fixate on the probability of reaching the finishing line, of touching base at the house of complete remission.’
That was the last I wrote on cancer back then. You see, I wanted to step outside of that fear, relegate it in my mind. I suppose I mainly succeeded. For five years of remission I qualified to become a secondary English teacher, travelled, fell in and out of love, lived my life with a view to having a long future.
The Big Bad did return though, in 2016 with a new primary tumour in my left breast. I felt somewhat frustrated that all that fear had come back to justify itself. The new tumour was found in my yearly scan: an essential part of the monitoring process after any cancer diagnosis. I will wrap this chapter of my life up by saying that it was dealt with via a second mastectomy and little else medically speaking. Caught early, I did not have to endure any further treatment. Part of me wonders whether this was a mistake. However, it does not serve me now fixating on this. One again I moved on, but emotionally the fear had resurged with this second diagnosis before thirty.
In 2019, slap bang in a brand new year, I was diagnosed with secondary breast cancer. A dull hip ache sent me advocating for scans and investigations. This wasn’t easy, I had to have some very difficult phone calls to get the secretary to organise a bone scan. What’s more, it took four tests, including a bone biopsy, to determine that it was cancer. How do I feel now? Sometimes tired, sometimes scared, but mostly alive. Knowing that you will need to dedicate your life to healing, one day at a time, is overwhelming. But I like to think that it is not outside of the realm of possibility. Fear is life limiting, it poisons your present moment, and that is all we really have, cancer or no cancer. I am not immune to fear: it resurfaces with every three-month scan. Scanxiety takes hold but not when I do not let it. As I write this, my results are next week. Until then I will focus on what I have: a lively, life affirming classful of kids ready to learn with me, a safe home that I can return to a place of self-care, and a dream that keeps me alive. I will finish my book, but it won’t be about cancer. Not directly anyway."
Thank you so much for sharing your wonderful blog with us, Katie. We can't wait to read more of your writing in the future!
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 doesn'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; an incredible support network for parents living with stage IV cancers.
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 heart-breaking 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 hair loss 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 opportunities 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 every day 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!
Today we have the honour of introducing you to Ivania who has written a moving blog for us about her experiences following her diagnosis of breast cancer fourteen years ago.
Following her diagnosis, Ivania felt the loneliness that will be very familiar to so many of us as she didn’t know of anyone her age who was going through (or had gone through) breast cancer treatment.
Ivania took matters into her own hands five years ago and started a blog to document her experiences. She called her blog “Borrongonga” which is what her dad called her when she was a little girl.
Ivania told us that she wanted to write about her experiences, educate people about the challenges faced by young women diagnosed with this disease, and also help other women have a successful voyage during breast cancer treatment. We think this will strike a chord with many of you who are doing the same thing and are finding support and companionship in the community of amazing women out there on social media.
You can find Ivania on Instagram @borrongonga.
Here’s what Ivania has written for us today:
“Fourteen years ago, my life was apparently “perfect”. I was married to a nice guy, we had good health, we made a good living together, we traveled often, and we had good friends.
In 2006, we felt we were ready to start a family, I had a miscarriage in March and that September I received the terrible news that I had breast cancer.
There isn’t any required breast cancer screening for women under 40 in the United States. I was not one to do self-examinations and I still don’t; but for some strange reason, I found the lump myself.
I was 31 when I was diagnosed with stage 2 breast cancer. I did not know anything about cancer, at least anything good. I was not prepared to be sick. I was not ready to give up. I wanted to fight, but at that moment I did not think it was slightly conceivable to win any battle. I was already defeated because I did not know anything. I was blind.
Not knowing is perhaps your biggest enemy.
I think about the day when I first found out about my diagnosis and the feelings of distress, panic, anxiety, shock, and stress immediately come back. I realized that the wrong group of doctors were handling my case, so I decided to contact a good friend who worked at Massachusetts General Hospital (MGH) in Boston, MA. He pointed me in the right direction and recommended an Oncology surgeon right there at MGH.
It was 6:00pm on a Friday when I got to the hospital. All the staff were gone, but my surgeon was waiting for me. I spent about an hour with her and learned a lot about breast cancer: What it is, where it is located, how it progresses, etc.
She helped me understand everything with drawings and gave the most sincere and hopeful words. I loved her. I left the hospital feeling a tad better. I can’t say that I was super positive or optimistic, but at least I understood my disease and my options. I was educated.
The following week, I was scheduled to get an MRI to know the exact location of the tumor. After that, I had a date for surgery. My doctor successfully removed the tumor and 19 lymph nodes.
That was the easy part, then the hard work began.
After slightly recovering from surgery, I met with an oncologist – also at MGH. We discussed what my treatment was going to be like for the next 6 years. This included chemotherapy, Herceptin, radiation therapy and 5 years on a drug called Tamoxifen.
If you are at your prime for childbearing, and your treatment includes chemotherapy and Tamoxifen, then you should/must see a fertility doctor before starting chemotherapy.
I met with a fertility doctor, who had nothing to do with my treatment, and gave me the spiel about the hypothetical opportunity to become a mom through in vitro fertilization… In six years!
No, thank you.
How could I think about being a mom when my own life was at stake?
At that time, it was my personal decision to not pursue fertility treatments and to start chemotherapy ASAP. Being a mom, a healthy one, could wait.
I started chemotherapy as planned on a Monday morning. I showed up bright and early to my first treatment. At MGH a nurse is appointed to you and will be your chaperone throughout your treatment. The drill is pretty much the same every time – weight check, blood work, then treatment.
I guess a dreaded part of going through chemotherapy for many women is losing their hair. It is pretty easy to understand why. Hair is a sign of femininity. Losing your hair makes you look vulnerable and easy to label as someone who is sick.
Buying a wig to regain what you’ve lost is not a simple, straightforward solution – it’s not the same as the real thing. I got fitted for a synthetic wig, which I only wore once. Instead I wore scarves, which I found to be very easy and versatile. I had a few regular scarves that I just tied around my head, but my personal favorite was one that I could tie on top.
I lost my hair a few days after my second treatment. Knowing I would lose it, I decided to cut it off beforehand. I thought it would make seeing it fall out be less challenging.
Honestly, losing my hair did not faze me. I was more concerned about reaching a chemically induced menopause at 32.
My periods did stop after my second treatment. My doctors were not sure if they were ever going to come back. For the first time in my life, I wanted to get my period. I started to despair about the idea of ever having a biological family.
Getting breast cancer at 31 brought my world to a crashing halt and forced me to reevaluate my husband, my job, my life and what I wanted out of it.
I understood that I deserved to be with someone who shared my joie de vivre, my craziness, my laughter and my essence. I also learned that life is too short and that my wish was to share, in an unconditional way, a life project with a person with whom I could be myself with – a partner, not a boss.
Sometimes I can’t help but I wonder what went wrong in my marriage and if divorcing was inevitable, or if breast cancer had something to do with it. Interestingly enough, I think going through that ordeal made me understand that we were not right for each other. Breast cancer brought us together and distanced us at the same time.
My treatment lasted a year and a half, and that’s when we were the strongest as a couple. After treatment, I realized that we did not see life the same way. I wanted to find a way to make us strong as a couple again. I knew he wanted a family; but starting a biological one was not going to be an option for a while.
It was a very difficult time and a challenging situation, but probably the most convincing thing for me was to think: “I didn’t survive to have an existence where I don’t feel like I am living at all.” It took me two years to make a final decision about my marriage, but today I have no regrets about it.
After my divorce in 2010, I promised myself that I would always think about myself first. This is how my pursuit of happiness began. Unfortunately, I ran into situations where I didn’t make the best decisions.
I was meeting new people, but not the type of men I wanted to be with long term. Even though I was very busy at work, that was not enough distraction to keep my mind occupied. Most importantly, I felt very lonely and loneliness can be your worst counselor at times.⠀⠀⠀
I was seeing someone for about 2 years and one day I found out I was pregnant. Having gratitude for not feeling lonely and being with someone, made me think I was happy enough and in love with him. All of that and the pregnancy hormones made me believe that we could play house together.
And once again, I was wrong.
Today, fourteen years later, I don’t have my life figured out by any means; but all of this self-discovery led me to become a mom, the most rewarding experience of my life. I did go through a bad time, but I became a mom at the ‘right’ time. My six-year old son has brought so much joy to my life and has given me the most important reason to live.
He is the engine that keeps me alive. Thanks to him, I have a valid justification to strive for better things, avoid harmful situations, stay fit and live a healthy lifestyle.
I never thought about writing about my personal experience with breast cancer, but I thought that my story could raise awareness and help other young women going through the same thing I went through in 2006.
This is how “Borrongonga” – my personal blog – was born about 5 years ago, after a casual conversation during lunch with a friend. It is a blog that narrates my experience going through breast cancer, my recovery, my divorce, and becoming a mom 8 years after cancer.
Since I moved back to Colombia, after living in the United States for 15 years, writing became a cathartic exercise for me. So now I make it a habit to write about valuable life lessons, survivorship, motherhood, relationships, marriage, love, and the life I dream of.
2018 was a wonderful year for me because I gained closure to a lot of chapters in my life. I started working again, I finally forgave myself for my past decisions, I healed, I established an order of priorities in my life, and I accepted my single mom status.
Even though I haven’t been in a relationship for a while, I feel I’ve healed. I am ready to be in one with a person who truly loves and values me and, most importantly, respects who I am.
I am at my best moment as a woman, because I’ve learned to love myself, and am capable of having better control of my feelings and emotions. Even though I am still working on finding that almost perfect balance – where I am in full control of my decisions in a rational and assertive way; I would not want to lose my essence – a combination between a woman with a modern front and an inner chaste persona, who doesn’t want to forget about herself.”
Thank you, Ivania, for sharing your story. It is always a pleasure to connect with like minded women who feel as strongly as we do about supporting each other and sharing our stories.
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 recently. 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.
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:
We’ve said it before and we’ll say it again… we love connecting with you, getting to know you and sharing your stories.
Today we’re honoured to introduce you to Elle. Elle is 28 and lives in beautiful Australia. She was diagnosed with High Grade DCIS last year when she was just 27 and underwent first a lumpectomy and then a double mastectomy.
In addition to raising money to help researchers in Australia find new and more effective and less invasive ways to detect and treat breast cancer, and putting together care packages for women in hospital who have had surgery or are undergoing treatment, this amazing young woman is currently writing a book filled with open letters from women to their breast cancer which she plans to sell to raise funds for NBCF Australia.
Elle has written a wonderful blog for us today describing her story and her relationship with her body.
“Like many women, I struggled to love, accept and appreciate my body just as it was through my teenage years and early twenties but when I was twenty-four, I started, slowly but surely, to build a healthy relationship with my body. I would look in the mirror and trace the curves of my waist, hips and legs with my fingers instead of squeezing the squishy bits in an effort to
essentially do what my mind wished I could do – rip them off.
The relationship with my body changed many times over the next few years.
I struggled but I was able to accept the changes so much easier than I could before because this body I was in was mine and nobody else in the world had one exactly like it. How cool is that?
After being diagnosed with a rare autoimmune brain disease at 25 I was put on a cocktail of medication to control the inflammation in my brain and spinal cord and to stop the disease from attacking my body. As many medications often do, these too came with side effects.
The steroids I had pulsed into my body intravenously over 3 days eventually led to me gaining 20kgs as well as developing Type 2 Diabetes and Osteoporosis.
I would look in the mirror at my puffy, acne ridden face and I didn’t recognise myself. I hated looking in the mirror.
None of my clothes fit me anymore and even those that did felt tight and uncomfortable but no matter how much I adjusted my clothes I couldn’t adjust the extra weight on what was essentially my whole body.
My skin burned and pulled from the stretching and I had deep, painful red and purple stretch marks covering my hips, inner thighs, inner arms and breasts.
It took a while but over time I would begin to feel these stretch marks with the same compassion and love that I felt my hips and legs before I started medication and gained this weight.
I started to dress up again instead of covering up, I found new and different ways to let my body just be and to encourage my mind to stop being so critical and to start being more comfortable.
It seemed that people around me were more offended by my body than I was, and this was conveyed in both subtle and not so subtle ways. I realised that I was living a very privileged life in many ways, but one being that I wasn’t judged or condemned because of the size or shape of my body up until now.
It became more apparent to me now than ever before how harshly people, especially women, are judged based on how they look, how much space we are told to take up in the world, both figuratively and literally and how uncomfortable people were with anything that was outside of the box of what is expected of a woman and her appearance. Stay small, in every way possible.
It also became obvious to me how quickly people make assumptions about your life based on the size and shape of your body. I knew my weight had changed purely because of medication but I also knew that even if that wasn’t the reason it changed, my body was nobody’s business but my own, and the reason it looks the way it does has absolutely nothing to do with the essential and important parts of what makes me who I am.
Now, keep everything I’ve just written in mind because every last bit of the story I’ve told you about learning to be kind, compassionate and accepting of my body and mind is about to change, almost to the point of non-existence.
It was Breast Cancer Awareness Month here in Australia. I noticed some symptoms in my left breast that were persistent for about six weeks but as most women do, I convinced myself it was nothing that needed attention, it was probably just because I was due for my contraceptive injection, it was hormonal, I even convinced myself for a little while now that it was in my head.
My experience when trying to get a diagnosis for what I now know is an autoimmune disease, was traumatic to say the least. I was told on multiple occasions by multiple specialists that my symptoms and my illness were “in my head” so, why would this pain in my breast be any different?
As I was buttoning my pants up just after the nurse had given me my contraceptive injection, I nervously babbled out what could only be explained as a ‘word vomit’. I told her all about the symptoms I had been having in my breast, why I didn’t have it checked, that it was probably nothing but please can you check it because I’m secretly shitting myself about it…
I have a long family history of breast cancer affecting my maternal aunt and two of my great aunt’s but I thought the separation in the family tree was enough branches apart for me to never be the one sitting across from my doctor being diagnosed with breast cancer.
Women my age don’t get breast cancer. Ah, to be young and naïve!
Fast forward to October 15th, 2019 and after an almost four week wait, a mammogram, ultrasound and two biopsies I sat across from my GP and had my world torn apart.
Here I was, 27 years old, barely a twig on the family tree, being told I had High Grade DCIS in my left breast.
I don’t feel like I’ve moved out of that day, it feels like the weeks and months in between that moment have moulded into one messy, traumatic and life-changing day that is broken up by meals and sleep. It has felt like I’ve just been existing, just moving through each minute but not feeling anything but the shock of the few words every woman fears.
In December 2019 I had a double mastectomy, three weeks after a lumpectomy with no clear margins. Between my double mastectomy and my lumpectomy, I had a massive 10cm of cancer removed from my left breast and I never had a lump.
I remember the pain when I woke up, both physical and emotional. It was deep and aching and I longed for my breasts. Part of me that nobody else in the whole world had was now gone and never coming back.
The loss of my breasts felt so much deeper than a physical loss and felt so much more than a loss only I was forced to bear.
I grieved the loss my parents must have been feeling, to watch the body of their daughter, a child they created together out of love, a body they watched growing from a child to an adolescent to a woman. A body my mother grew, and one both my parents held and nurtured for 27 years was now being taken apart so I wouldn’t be taken away from them entirely.
I looked at my sister, Grace, wondering what she must be feeling seeing her sister go through this. Despite my pain all I wanted to do was protect her like I have every day, month and year before I was diagnosed but now, I watched, feeling like I had failed her, as she was thrust into the role of protecting me.
I can no longer bring myself to refer to my breasts as breasts so instead I refer to that part of my body as my chest. Just as I did when I gained weight, I no longer recognise myself when I look in the mirror. I feel completely disconnected from my own body, and this time as much as I try, tracing lines over my chest is a fruitless exercise to show myself compassion or even get to know this new version of myself because I can’t feel my own
touch. I can’t connect.
I’ve had to meet and welcome new versions of myself so many times in the last few years, and the first few times I welcomed her with open arms, but now? I don’t know how to let this new me live without grieving. I don’t know how to feel like I haven’t been completely robbed, I don’t know how to feel anything but grief or anger. I don’t know how to be gentle or compassionate or even a little bit okay with this new me.
This new version of me continues to challenge me in ways no woman should ever be challenged and my heart aches to know that despite this, there are thousands of women just like me, all around the world, feeling challenged, defeated, broken and disconnected from themselves.
This ache, although painful, draining and at times all consuming, is the reason I will fight, forever, for every single woman before and after me with a breast cancer diagnosis because no woman should ever have to say goodbye to part of herself when they were just learning to say hello.”
Thank you so much, Elle, for sharing your heartbreakingly honest account of your evolving relationship with your body and your self-image. We felt every word.
You can find Elle on Instagram @breastiesforlife
Today we are delighted to share the third in our series of guest blogs. Please meet the lovely Lucy. Lucy has written a wonderful blog for us today explaining her experience following a single mastectomy and writes about how she has navigated explaining her treatment and surgery to her young daughter. You can find Lucy on Instagram @loobyloulu.
Lucy is an absolute hero in our eyes; she had a mastectomy at the beginning of 2020 and we can’t imagine what it has been like going through recovery while in lockdown. Lucy, you are amazing.
Here’s Lucy’s story in her own words:
“I’m Lucy, a single mum to a beautiful little monster called Millie. I love dancing, wine and fancy dress! They are the perfect combination in the right order!
In January 2020 I was diagnosed with breast cancer aged 32.
My initial thought was “I want a mastectomy straight away”. I felt like my body had failed me and I wanted the breast removed ASAP.
The operation went smoothly and as well as a single mastectomy I had a full auxiliary clearance on my right arm. Waking up with a drain and little to no arm movement was strange but you soon learn how to adapt.
The drain is exactly that, an absolute drain!! I had couple of issues with it, mainly because I got the tube caught on a door handle and so loosened it slightly….but a couple of dressing changes and it was good. The liberation and freedom you get and feel once it’s removed is joyous! I literally skipped out of the ward!
One of the most important things for me was to show my daughter Millie my scar straight away as I didn’t want her to be scared or worried about my chest. Five months and she’s just accepted it as the norm which for me is brilliant.
I was offered reconstruction surgery at the time of my masectomy but chose not to have it. I still have quite a lot of numbness across my chest and arm, especially in my armpit area. Gone are the razors in favour of hair remover cream!
I’m now at the stage of wanting to wear a bra again and I have to admit, it’s incredibly difficult to find any ‘nice’ post surgery bras, especially if you have small breasts.
For anyone who is facing the same surgery as I had, I agree it’s a really scary time but you will get through it. My biggest tip for auxiliary clearance – do your exercises! They are boring and sometimes a little bit painful but they work!”
Thank you so much for sharing your story, Lucy. It means the world to us here at Valiant Lingerie that we are able to share stories from amazing women like you!