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.
We're really excited about today's wonderful guest blogger. Lucy is a very talented tattoo artist and she specialises in tattoos for women who have been affected by breast cancer.
We'll let Lucy introduce herself:
"Hi everyone. I'm Lucy Thompson. I'm a 30 year old single mama and a paramedical tattoo artist specialising in 3D and decorative tattoos for breast cancer survivors. I created a charity – the Nipple Innovation Project – to offer free 3D nipple tattoos and to raise the standards of restorative tattoo options following mastectomy surgery and to educate. I want to empower people with the restorative tattooing I offer and raise awareness and educate people on the importance of finding a suitably trained practitioner to seek this service from."
Lucy has written today about the story behind her passion of restorative tattooing and what inspired her to create the Nipple Innovation Project.
Take it away, Lucy!
"I have been tattooing since 2014 after I spent years and years trying to get an apprenticeship in a very male dominated industry. I’m also a single mum to an 11 year old boy, I come from a family of farmers and artists – a vast contrast in professions ;)
I have grown up admiring my grandparent’s artwork; they’re self-taught painters. I recall spending hours and hours sat with them being taught new painting and drawing skills.
Drawing and painting have always been my go-to activities throughout my life. When I left school I knew I wanted to do something creative but never knew what. When I got my first tattoo (which was underage at the age of 16), I remember being absolutely fascinated by the process and the artwork. It piqued my interest and sparked something in me which empowered me to seek training to become a tattoo artist!
Once I'd completed my apprenticeship it was obvious I had a natural flair for the arts which inspired me to open my own studio. By this point I had acquired lots of tattoos myself and I knew how much more confident and empowered I felt in my skin for the tattoos I'd had done. I wanted to help other people feel this good!!
I went on to open my own studio and I was asked by a couple of people to cover up some self harm scars on their bodies. They told me that other tattoo artists had said they couldn’t help them because the scars were too bad. This surprised me because I felt if anything people who have scars, a tattoo is possibly more important to them as scars can be a reminder of a past trauma, a constant reminder of a time in their life that they wanted to forget.
This set me off and inspired me to further my knowledge on scar tissue. It was at this time I decided to start the scar cover up project. I gave away one free tattoo a month to someone who couldn’t afford a cover up but so desperately needed one, I was in a position to be able to help heal others with beautiful artwork and I wanted to do what I could to make a difference.
A year or so into the scar cover up project I was approached by a client who asked me to do a nipple tattoo. This was the first ever time I’d heard of a ‘nipple tattoo’ and I had to do some research! They told me how they had had one done at the hospital and it had faded away.. I was shocked – the hospital?! Tattooing?! This prompted me to do some research and was quite shocked by what I found; hospital tattoos being done by medical professionals with minimal tattoo experience, the tattoos looked nothing like nipples and faded nearly every single time. I also found that a few semi-permanent nipple tattoos were being offered by semi-permanent make-up artists, these also faded away. I didn’t understand this at all. Why would anyone want a nipple that faded away?!
I knew my auntie had had breast cancer when I was younger, I asked my mum if she knew if my auntie had a hospital tattoo and she explained she didn’t know, she told me how it was a very difficult and challenging time for my auntie and she never openly spoke about it at the time or even since her mastectomy. It had been ten years at the time. I plucked up the courage to broach the subject with my auntie and she was very closed off, she told me her hospital tattoo experience was horrible and it had faded away, she doesn’t ever look at it and that was that.
It saddened me to hear this coming from my auntie, a brave survivor of breast cancer, a ten year warrior! For her to not want to talk about her victory of being ten years cancer free or to be able to even look at her body, truly pained me. I couldn’t understand it. Why were these incredible people having such important tattoos done that faded away?
This set me off on some internet searching. There HAD to be someone out there doing permanent nipple tattoos. I couldn’t find anyone in the UK so I took to Instagram and found a collective called the Areola Restorative Tattoo. They were a USA based collective of professional artists who specialised in realistic tattoos that had a 3D effect and more importantly were PERMANENT!! There and then I sent a message asking to know more. I spoke to Stacie-Rae who advised me to buy her book and when I received it in the post a few weeks later I read it from back to front that same day! I knew I had found my calling.
At that point I knew I had to do this training, more than anything. A class was being held in Texas, USA, and I couldn’t explain it but I just knew I had to be on that class.
With the support of my family I signed up and made travel arrangements, no going back! The training was in a beautiful cabin house in Texas and it was life changing, it truly was.
On the third day I did my first ever nipple tattoo for a lovely lady whose surgeon had told her due to her unilateral mastectomy she couldn’t have a tattoo that would match her opposite side. She was obviously devastated and so desperately wanted to feel ‘normal’ or ‘whole again’. No pressure then!
I managed to not only create her a new tattoo but we got a pretty good match to her natural whilst creating some visual balance at the same time. She was elated as was I! She was over the moon, she cried, I cried, it was a truly beautiful and life changing moment. I remember leaving the room shortly after to call my mum in tears, I was absolutely overwhelmed by pride, joy and happiness all at the same time. Just incredible.
I was lucky enough to be able to help my auntie with her permanent nipple tattoo. She was reluctant at first, she asked lots of questions and I showed and talked her through the process. She even spoke to a client of mine before deciding to trust me with this important part of her life that she had kind of almost put behind her and moved on from. I won’t go into too much detail but I can say it was one of the most special, memorable and intimate times of my life. It was such an honour to be able to help my auntie. I got to see her confidence grow in ways neither of us realised were possible. She even told me she had been speaking to some friends about how much it had helped her self esteem, this coming from the lady who wouldn’t even discuss her breast cancer experience before, is simply too incredible to put into words.
I knew I wanted to help other people feel empowered and feel that same feeling myself again, it was so special. I was excited to return to the UK and build on my experience! I offered out the next 20 tattoos for free and once I had built up my experience and portfolio I started to charge for my services. I found this a difficult thing to do as some of my clients couldn’t afford the tattoo, whilst it was reasonably priced for the difficulty, speciality and skill that went into creating it. I found clients couldn’t claim on their insurance either as I was just a tattoo artist. I was torn by wanting to be able to help everyone that needed this service but needing to take a wage too. This got me thinking, if only there was a pot of money to be able to pay for this challenging and specialist work so NO ONE had to miss out…
I had an idea of starting a charitable organisation that could pay for the tattoos, I called it The Nipple Innovation Project. The idea behind N.I.P was to provide funding to people who needed it. I didn’t feel money should be an issue when seeking this restorative and healing art work, I knew how important and life changing this work was and I wanted to be able to offer this out to anyone and everyone who needed a new nipple tattoo. Since we started in 2018 we have grown to a team of 6 verified artists throughout the UK and southern Ireland.
We now have an online directory on our website which you can easily navigate to find your nearest practitioner. Whilst I have people travel from all over to get tattooed by me – its not always practical for everyone so my goal is to grow this directory so we have a fully trained artist in every city throughout the UK. We became a registered charity in March 2020.
The long term goal is for us to be recognised by the NHS as a trusted service to be able to alleviate the pressure and costs to the NHS by undertaking this work whilst being funded by the Nipple Innovation Project and offering the service free of charge to everyone who needs it. This would free up surgeons and nurses time where it is often needed elsewhere, not spent tattooing. There was a huge waiting list for this service pre-covid I dread to think what it is now. Unfortunately the physical and mental importance of having this work done is massively underestimated by many medical professionals. The impact a failed nipple tattoo can have on someone’s self-esteem or mental health is really quite scary, we plan to change this. Its 2020: it's time to get it right the first time, every time.
This specialist service could then be left to experienced, dedicated and specialist artists who dedicate their time and career to perfecting this particular service. This work is extremely challenging and needs to be done by someone with previous professional tattooing experience, an artistic eye and knowledge of scar tissue. The skin is so so delicate and has been through so much trauma, that needs to be respected and understood. It is often overworked which causes more damage and can make corrective tattooing almost impossible, which is devastating and avoidable.
At the moment I'm working on growing the Nipple Innovation Project by training more dedicated artists who are interested in being a part of our movement. We're a charity run solely on donations, this helps us fund these treatments and offer them out for free. Covid has put a stop to our annual fundraiser so we are having to approach it differently this year but have found our waiting lists are increasing.
We will figure something out, we have a great team of support behind us and people who are genuinely wanting to back us and help us change the world – one nipple at a time ;)"
Thank you for sharing your story with us, Lucy. We've seen first hand what a huge difference nipple tattoos can make for people who have undergone breast surgery. We're blown away by your passion and the amazing work you do!
We have another wonderful guest blogger for you today. We're delighted to introduce you to the lovely Gabbie. Gabbie is a previvor who has been blogging about her experience of having a double mastectomy during a pandemic and living flat.
Gabbie sadly lost her mum to breast cancer; Gabbie was 19 and her mum was only 45. Years later, Gabbie underwent genetic testing and discovered she has a BRCA2 mutation. Gabbie has written so beautifully and movingly about her experiences in her blog thebooblesswonder.wordpress.com. We wholeheartedly encourage you to check it out. You can also find Gabbie on Instagram @thebooblesswonder.
Gabbie has written for us today about her decision not to have reconstruction surgery. Take it away, Gabbie:
"As soon as I heard I had a BRCA2 mutation, I knew I wanted a preventative double mastectomy. I had just turned 34 and was about to give birth to my second child. I couldn’t bear the thought of dying of breast cancer, like my mum had, and leaving behind my children. For me, the decision was easy: remove the breasts, reduce the risk.
But did I want breast reconstruction? That was trickier.
I have always felt fairly comfortable in my body. Fairly. Like most of us millennials who grew up in the nineties era of photoshopped models, I can’t help but carry around a mental list of my alleged physical flaws. Too short. Too white. Too hairy! Still, generally, I liked the way I look. Even after two kids and the permanent changes they had wrought on my body. Stretchmarks. Split abs. C-section scar. Wrinkly belly. After nearly two years of breastfeeding, my breasts in particular were unrecognisable. Deflated. But could I live without any breasts at all?
Right from the start, my gut instinct was that I wanted to be flat. But I also knew this decision was too important to make by instinct alone: I needed to consider every available option, and make an educated choice. I carried out a lot of research on different types of reconstruction. A lot. I read books, scientific articles, blogs of personal experiences. I joined multiple Facebook groups. I introduced myself, asked questions. Many, many generous women sent me pictures of their different surgical results, so that I could see what they looked like and consider whether I would want that for myself. For a while, my phone gallery was chock-a-block with boobs!
There seemed to be so many possibilities for reconstruction. Using my own tissue, using implants, using a combination of both. Saving my nipples or removing them. And so many potential complications! Rippling, rotation, necrosis. I was overwhelmed with information, fighting my way through it, trying to weigh everything up. But amid it all, I kept coming back to the idea of being flat. Turning it over in my mind, like a smooth stone. It was a calming idea, I found. As a surgery, it carried the least risk. Had the shortest recovery time. And I felt like it was the choice that would be truest to me.
When I met with the surgeon, I told her I was seriously leaning towards not reconstructing. Nevertheless, I asked her what she would suggest for me if she were to reconstruct. Not every reconstruction surgery is suitable for every woman, and I felt it would make my decision clearer if I knew which options were actually on the table.
The surgeon assessed me carefully, looking first at my breasts and then also at my body, for sites where she could potentially harvest tissue. As it turned out, my options for reconstruction were limited because of my body type – I am quite petite, with low body fat. I didn’t have enough tissue for DIEP-flap reconstruction, where part of your tummy is used to create new breasts. I could have an LD-flap reconstruction, where your shoulder tissue and muscle is used, but my surgeon said that without adding implants to boost the results, I would find them disappointing. My best option was probably to have a direct-to-implant reconstruction.
This pretty much decided me. I was certain I didn’t want implants. While I thought they looked incredible in other women’s reconstructions, I wasn’t open to the additional risks they posed for complications, however small those risks were. I am naturally very risk-averse. A born worrier. I knew that if I put implants into my body, I would be fretting about them for the rest of my life. And I just didn’t want to spend any more time fretting about my boobs. This mastectomy was supposed to be deducting worry from my life, not adding to it!
Ultimately, I decided to go with my gut and not reconstruct. It felt right. That’s not to say I wasn’t frightened about it – there was fear there, for sure. Not just about the surgery itself, but about afterwards. What I would look like. How people would react. How I would feel about myself. Would I still like the way I looked, after my breasts were gone? Would I still feel sexy? Would I get mistaken for a twelve-year-old boy?!
Then, with less than a month to go until my surgery, it was cancelled due to Covid-19. This was a major blow. I had really geared myself up psychologically, and to have the surgery whipped away when it had been in arm’s reach was so distressing. I was terrified it would be put on hold indefinitely, that I might develop breast cancer before preventative surgery started up again.
As it turned out, I was lucky. I live in an area that wasn’t hit hard by the pandemic, and my surgeon called me in to have my surgery the moment she could, in the first week of June. I’ll be honest: even on the journey into hospital, I was still worrying a little bit about whether I should have asked for a reconstruction. But the pandemic had crystallised things for me: the crucial thing was that the boobs, and the risk they posed to me, were gone.
I had to go alone to the hospital, due to strict Covid rules. I was fizzing with nerves, but kept myself calm by bantering with my nurse as I waited to be called to the operating theatre.
When I woke up, I was surprised by the lack of pain. I was groggy, but comfortable. It wasn’t long before I was able to get out of bed and get dressed to go home. As I removed my hospital gown, I decided to walk into the bathroom and look in the mirror. The moment I saw myself, I was so relieved. I knew I’d made the right decision for me. Being flat looked fine. I didn’t look freakish or boyish, or any of the things I had worried about. I just looked like myself.
I’ve been living flat for three months now. I’m having fun working out what clothes I can still wear (spoiler: most of them!) and sharing my journey on my Instagram account @thebooblesswonder to help other flatties and prospective flatties. I love being part of this club of brave, beautiful and individual women, all rocking their foobs or uniboob or no boobs at all."
Thank you so much for your wonderful blog, Gabbie, and for continuing to share your story and support other women within this community.
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!
Hello everyone! Please extend a warm welcome to our latest guest blogger.
Gina has written a wonderfully insightful blog for us today about her experiences of having a single mastectomy with immediate reconstruction and the resources she found helpful in reaching decisions about what was right for her.
Here's Gina's story:
"My name is Gina Davidson, I'm 53 and I live in Northumberland. I moved north 23 years ago; a decision my husband and I made when we were expecting our first child as his family are based up here. I love the culture, the beautiful coast line, the ruggedness of the wide open spaces and it is the least densely populated county in the country - which suits me just fine!
My husband and I have 4 children; now aged 23, 22, 20 and 19. They are my world and give me a reason to stay positive.
I work full time for the local authority, ensuring children and young people maximise their opportunities for education. I am currently not working though as I am recovering from surgery - I have had my partially reconstructed breast removed and I have chosen to remain flat.
I was diagnosed with breast cancer in May 2019 and had a single mastectomy with immediate reconstruction. I hated the way it looked, the way it felt and the way it made me feel.
At the time of diagnosis, all the options for reconstruction were laid out for me and no discussion was had about the possibility that I may choose to be flat - who would choose that when surgery has come such a long way?
But I knew, as soon as I came round from the anaesthetic, that I had made the wrong decision.
After many many meetings with my surgeon and health psychologist - they finally agreed that to remove it was best for ME. I was due to have this surgery in May but because of COVID 19 it was postponed.
It was then that I started researching and looking for others experiences and opinions. Whilst I know many women who have been through breast cancer, most had had a lumpectomy or had had reconstruction surgery ( along with all the other stuff ie radiotherapy and chemotherapy) and were completely happy with the results of their surgery. But, although these women were wonderfully supportive, I didn't feel that I knew anyone who was struggling in quite the same way as me. I took to social media and found many supportive communities out there and yes it was ok to feel the things I was feeling and it was ok to choose to be flat!
@FlatFriendsUK is an amazing group that wholly supports women without reconstruction with lots of lovely ladies sharing experiences and anecdotes so that women can come together to talk about the practical and emotional issues related to living flat. I heard from another group about 'in your pocket' - a phrase that signifies empathy - I absolutely love that phrase.
@thetittygritty, who fronts the #changeandcheck campaign, has many supportive followers and she hosts live discussions about all sorts of cancer related issues in an extremely safe environment with lots of humour thrown in for good measure.
Through these communities, I have really improved my awareness and knowledge of what was happening to my body and knowing there were others out there like me boosted my confidence to start doing guest blogs and I was even interviewed for the Lorraine show (my 30 minute interview was cut down to just 30 seconds haha!)
Another community that has really been inspirational to me is @MastectomyNetwork founded by @mastectomyjay. Her 'Become Visible' campaign that ran in October for Breast Cancer Awareness month, was devoted to increase the awareness of ladies with a mastectomy and to give us a voice and a platform to share our experiences. It has been fascinating to learn, through this community, of the stigmas we live with imposed on us by society; we should look a certain way as women.
The Become Visible campaign involved courageous women sharing photos of their scars on social media. No names or faces were used. Unbelievably, some of these were taken down as they went against 'community guidelines' on nudity and sexual activity.
These images are not sexual at all - they are powerful and inspiring. I featured in one one of them - it was incredibly liberating - no one knows what is going on under our clothes but these photos made us visible.
For the first time in over 18 months, I am beginning to learn to love me again - to feel confident and sexy. With just 1 boob. Today I was at the hospital yet again to get my foob. I don't feel I need to wear it as I am quite happy as I am but I feel I need the option in certain situations, so that others don't feel awkward around me. Some don't understand that when I have elected to be flat, why do I want a prosthesis - I cannot explain but I just do.
I have posted a lot on social media sites about my journey, which after today, I feel is finally coming to the end ( disregarding horrible hormone therapy for ........... years and 6 monthly check ups with my oncologist ). Some have commented on my posts or sent me private messages and if just 1 person is helped through this then my experience will be a slightly more positive one. I will continue to fund raise for Breast Cancer Now and will constantly shout about #changeandcheck.
Cancer no longer defines me like it did, but I will always be a BC survivor and now I wear my scars with pride - a badge of honour so to speak - a statement to myself that I can overcome and thrive. I will continue to support others by making sure women feel supported and have a voice to make decisions about their treatment that can be life changing.
As an end to this, this is the 3rd guest blog I have written ( the others can be read on my Instagram page: @ginalouisedavidson). This one is very different to my last ones as I am in a very differnt place both mentally and physically right now - thanks to the support of family, friends and the whole BC community. No one is alone x"
Thank you so much for sharing your story with us today, Gina, and for sharing these incredible resources which have been (and continue to be) so valuable to so many.
Hello everyone and welcome to our next wonderful guest blog!
Today’s blog is written by the lovely Casey.
Casey is 33 years old and BRCA1+. She had a prophylactic total hysterectomy on 26th May 2020 and a prophylactic bilateral mastectomy without reconstruction on 30th June 2020.
Casey’s mission is to help normalise flat closure among previvors and young women, as well as to inspire the flat-chested among us with outfit ideas as she “shops her closet” post-op.
Casey has always loved fashion and clothes and having no boobs has presented a fun new challenge for her as she gets dressed each day.
Casey says that she is a beach girl through and through. She lives with her husband and three kids in St. Petersburg, FL, right near the Gulf of Mexico.She loves paddleboarding, reading NYT bestsellers, making art (collage mostly), and drinking iced coffee on road trips with her family.
Casey would love to connect with you all on Instagram @theflattiecloset!
Here’s Casey’s story in her own words:
“I have a hard time wearing high heels because I feel like I’m lying about my height. I’ve only ever dyed my hair with semi-permanent dye because I’m happy living with my natural hair color. I never liked the idea of push-up bras because they felt a little dishonest. Heck, I didn’t even get french tips for my wedding (all the rage when I got married) because I rarely painted my nails and I wanted to present myself accurately.
Now that I write that all out, I’m realizing how completely neurotic I sound. But stick with me! The point of these bizarre confessions is this: I like feeling like the person that I was made to be. Celebrating my unique genetic makeup. Being the one and only Casey. Being my true self (cue the Disney ballad).
So: when a BRCA1 gene mutation reared its ugly head and I needed to do something about it, I wanted to simply morph into a new, natural version of me: a girl who was losing her boobs in an effort to prevent cancer, and gaining some pretty badass scars in the process. In fact, I barely even gave implants the time of day. I knew in my heart of hearts that I wanted to go flat and stay flat. That might sound pretty crazy to most women my age, and I get it. I basically turned down a boob job. And believe me, after breastfeeding three babies, my chest could have used the revitalization. But in the end, I had to be true to who I am, and that meant opting out of further reconstructive surgery. Just scars, just flat, just my skin on my ribs.
I knew that women went flat – I’d seen information online that indicated it was an option post-mastectomy. But when I went to search the all-knowing Google, all I found was very limited information, some clinical photos of scars, and a few forum accounts of breast cancer survivors who had gone flat. To be honest, I didn’t feel like I fit in. I wasn’t a breast cancer survivor, I wasn’t middle-aged; I was “just” a previvor in her 30s.
I started to wonder if there really was anyone else out there like me. Did women actually just walk around and go to the grocery store flat? Were they self-conscious at all? Would I regret my decision? Would it be good to get a prosthesis? How would clothes fit? Could I still wear what was in my closet? What did not having breasts feel like? How would my brain process not having boobs anymore?
The questions kept coming. But my biggest question was: where were the flatties? Specifically, where were the previvor flatties?
I turned to Instagram, and began searching all kinds of flat hashtags. Once I’d waded through the photos posted by owners of Flat-Coated Retrievers (yeah, the main “flattie” hashtag is co-opted by dogs – face palm), I started to get somewhere. I found a small army of amazing women to follow, but I also began to learn that flat closure after a mastectomy was an option that had been fought for for years by a crusade of brave individuals. This group of women had been campaigning, dealing with botched surgeries, picketing for their rights, and advocating for all women to get the surgery results they desired. Going flat was a bigger deal than I initially realized – it didn’t used to be such a simple, easy decision to make.
It’s because of these women that my breast surgeon didn’t flinch when I asked her for a flat closure. She was aware because this group of women had fought to make doctors like her aware, and for that I am so very grateful. Not only did I find the flatties, but I found that those flatties were beautiful and badass.
I’m now proud to join the crew as a newbie, adding my voice to the mix, sharing my love of fashion, and writing honestly about life as a flat previvor. I am still slowly trying to find more women who are previvors like me who have chosen to go flat – if you are one, give me a shout! We seem to be few and far between, and that’s one of the main reasons I started my Instagram account – I want to connect with you!
I want to be able to talk about what life looks like for those of us who haven’t fought cancer, but still need to fight genetic mutations. I want to showcase what clothes look like on a flat chest, and encourage women considering a flat closure that being fashionable is still an option. I want flatties and potential flatties to know that life can be good even without lady parts; that we are free to be ourselves, no matter what form that takes.
And I especially want previvor flatties to know that their stories are valid and important, and they are not alone.”
Thank you so much, Casey. We love Casey’s mission to connect with and support other previvor flatties.
Like Casey, we are so passionate about doing what we can to ensure that you feel empowered and confident and that no woman in this community feels isolated and alone.
It’s time for another fabulous guest blog!
Today we are delighted to introduce Kari.
Kari describes herself as a farm girl from Minnesota who now lives in the countryside in Wisconsin with her husband, two kids (ages 12 and 15), and her dog, Lucky.
Kari is a high school chemistry teacher and will shortly be starting her 21st year of teaching! Kari enjoys lazy lake days at her family’s cabin, reading, and spending time with those she loves.
You can find Kari on Instagram at @kekuhl
Kari has written about her experiences last year following her diagnosis. Here is Kari’s story:
“Life sure can turn on a dime and test you in ways you never expected.
Last year, 2019, was the year I never expected to have thrown at me, at least not yet. I was 43 and school was out for the summer; I’m a high school chemistry teacher. I was looking forward to lake days and playing chaperone to my two kids, ages 11 and 14. Instead, I spent the majority of the summer sitting in doctors’ offices, having biopsies and other myriad of tests, and finally the chemo chair. Oh, and let’s not forget about the 3 night stint in the hospital for a pretty bad deep vein thrombosis in my left arm.
The whole ordeal actually started in February. My husband found a lump in my right breast (yes, you can go down THAT road with assumptions!). He’s a family medicine physician and was able to get me in to see my doctor that morning and then an appointment that afternoon for an ultrasound. Luckily, it turned out to be a cyst. Fast forward 4 months. It’s now the end of June and I made the five hour trek with the kids to my mom and dad’s house for the weekend to celebrate my dad finishing chemo for bladder cancer. On the way, I started to get very intense breast pain and swelling. This was unlike anything I’d ever experienced. It was painful to move my arm and I couldn’t sleep, I assumed it was due to the cyst getting larger and having my period. A few days later, the pain and swelling began to subside, but I decided to have it checked out anyway, thinking I would need to get the cyst aspirated. My annual mammogram was due in a month, but I really didn’t want to wait. It’s a good thing I didn’t.
This time, as I sat in the waiting room of the Breast Center, I was much less anxious. After all, in my mind I already knew what it was. It turned out I was wrong. The cyst was indeed much larger and needed to be aspirated, but next to it was another mass that hadn’t been there in February, and it was not another cyst.
Two weeks later, I had 8mL of fluid drained from the cyst and the other mass biopsied. The next eight days were excruciating. I got the phone call the following day as I was in parking lot of our grocery store. I had triple negative invasive ductal carcinoma. I had zero risk factors but somehow cancer chose me.
Things happened so quickly I couldn’t breathe. It was like I was in a dream. I had a consult with a surgeon, a BRCA test (which was negative), an MRI, another biopsy for another mass that showed up on the MRI, my port-a-cath placed, a consult with oncology, a PET scan, and finally my first chemotherapy. Oh, I also had to tell my work I would not be returning to school that fall to teach.
Being an easygoing person, I had no idea what anxiety was until then. It was almost debilitating. Once I started chemo, it subsided some because I was actively doing something, but all I could think about was cancer. What if I died? How would my kids survive that? How would it affect my husband? What about my parents? I couldn’t sleep, had a panic attack while driving, and was so weak from the stress.
Miraculously, the chemo did not make me sick at all. That was about the only thing that seemed to be a bright spot. The anxiety kind of came to a head in August when I was in the hospital with a DVT, a deep vein thrombosis (blood clot), which was induced by my port. I spent 3 days in ICU being treated, and when they moved me to a regular medical floor, I finally broke down from the stress and anxiety when a nurse from interventional radiology happened to stop in to check on me. The poor guy. He had to listen to my blubbering and crying for 45 minutes. The next day I was finally on-board with taking something to help me out.
After this, things improved. I wasn’t sick from chemo, but I was horribly fatigued until I finished the first course (8 weeks of Adriamycin and cyclophosphamide). Once I started 10 weeks of taxol I bounced back and was able to go back to teaching 4 days a week, with chemo every Friday. I made it my mission to teach my students about how I was navigating cancer and how the treatments worked. The teacher became the student on Fridays, and then became the teacher again on Monday.
My hope is that my experience can show my students that when they are thrust into the cancer world at some point, either for themselves or a loved one, they’ll know that there is a light at the end of the tunnel.
I also learned a few things along the way that were not related to science. I found I had a far greater support system than I could’ve imagined.
My good friend, Tami, was there every day. She set up a Relay for Life team in my honor and also set up a meal train. She was with me for my PET scan and my first chemo. She came over when I couldn’t stand to be alone.
My kids, despite their own fears, were tough and resilient. My husband was steadfast, a calming voice of reason, and beyond supportive.
My dad, who had just gone through his own bout with cancer, made so many trips to be my babysitter I lost count. He was who I called when I needed someone to tell me I was thinking crazy thoughts.
I also learned that I’m a tough cookie and a positive outlook makes all the difference. I may not be able to change my circumstances, but I sure can choose how I react to them. It’s also ok to ask for help, both from others and from anti-anxiety meds. That was a tough pill to swallow.
Now it’s 2020 and a year later. I endured 20 weeks of chemo, a single mastectomy with no reconstruction, the removal of three lymph nodes (all of which were negative for cancer), and two other stints in the hospital for a DVT. Yes, two. I got another one five days after surgery. But here I am with hair growing back and, despite COVID, the excitement of a new school year because this year I get to go back on day one.
Cancer sucks. It ruled my thoughts and emotions for over six months. But it’s not getting any more of my energy.”
Thank you, Kari, for talking so openly about everything you have been through. We agree with you; you’re one tough cookie!
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’re delighted to introduce Susan. Susan is a digital communications professional and carries the BRCA2 gene.
She had a preventative double mastectomy with direct to implant, under the muscle reconstruction in December 2017 which makes her a proud breast cancer previvor.
Having had successfully coached herself to prepare for this surgery she is now working towards a Life Coaching diploma with a view to help people tackle their goals and improve their lives through the life changing magic of coaching.
You can find her on Instagram as @lookatsusie (as lookatsusan was already taken!).
Susan believes that mental health is equally important as physical health and just because she’s lost her breast tissue it doesn’t mean she’s lost her sense of humour.
After three knee surgeries in the last four years one of her goals is to strengthen her knee and leg enough so she can run every day…to catch her bus.
Without further ado, let’s hear from Susan!
“It was May 2013 when Angelina Jolie announced that she was a carrier of the BRCA1 gene mutation. She stated that this had given her a 87% chance of breast cancer and on the back of that knowledge, had made the decision to have a preventative bi-lateral mastectomy.
Back in May 2013 I was still five months away from receiving the results of my own blood test for the BRCA2 mutation. When I read her announcement and brave surgical decision, I remember thinking that Angelina was such a perfect ambassador for BRCA awareness and breast cancer prevention. To me she represented beauty, femininity and, above all, strength. I thought that if my results showed that I carried the mutated gene, then I would be proud to be associated with her.
You see, two years prior to Angelina’s announcement I had begun pursuing genetic testing as I became increasing aware of the prevalence of breast cancer on my dad’s side of the family. My dad’s mum had breast cancer. As did his sister (three times no less), his aunty and his female cousin. That’s a lot of breast cancer to consider.
Because of this niggling family history, I found myself broaching the subject with a practice nurse during a routine pill check in the spring of 2011. It was a sort of ‘by-the-by” kind of thing. I hadn’t previously discussed my growing concerns with anyone, not with my then partner, nor with my family or friends. To be brutally honest I wasn’t even sure what to ask…
“There’s a lot of breast cancer in my family..” I began.
“What side is it on?”
“Mainly my dad’s.”
“It doesn’t come down the father’s side” I was told by the nurse. Dismissed. Case closed.
Months later I tried again. Another pill check. Another practice nurse. Again, I told them about my family history of breast cancer.
“It doesn’t come down the father’s side”, I was told again.
I wasn’t taking no for answer this time.
“It’s on my mum’s side too.” I pressed, determined not to be fobbed off this time. This was true, my mum’s sister had finished her treatment for breast cancer and was still being closely monitored. So, on the back of it being present on both sides of my family, the nurse (I have to admit, somewhat reluctantly) referred me for genetic testing.
For this genetic testing meeting I was asked to bring in a family tree with the types of cancer my relatives had developed and the age they got it. After the consultant looked at my family history, he confirmed that due to the breast cancer history on my dad’s side, it did suggest that hereditary breast cancer ran in my family. To be certain I would have to have to have a blood test. Before that I would have to have genetic counselling so I was aware of the impact on my life should my test came back positive.
I had my genetic counselling and blood taken in October 2011. However, before it could be tested for the gene, a geneticist from my team explained that my breast cancer surviving aunty (my dad’s sister) had to have her blood tested first. This was to try and identify a mutation in her DNA. It’s like being given a book and looking through it to find a spelling mistake. Once you find a spelling mistake in that book, you know what you’re looking for and it’s easier finding it in other books. The other ‘books’ being my dad and myself.
Thanks to the complexities of the NHS and the difference of BRCA testing criteria between NHS areas it took a long time to get confirmation. My auntie’s genetic team in the North East had a stricter testing criteria than my team in London and were very reluctant to test her. In fact they initially flat out refused. It took some lobbying on my part to push this along. I say lobbying, I simply told my softly spoken geneticist in no uncertain terms, to Make This Happen. I had gotten this far into the process, I certainly wasn’t stopping now. To his credit and to with my undying gratitude, he made a passionate case for me, pointing out that my auntie had had breast cancer three times, and so they agreed to test her.
So, after waiting a painfully long year to find out that my auntie carried the mutated BRCA2 gene it was my dad’s turn to get his blood tested. He had the same spelling mistake. Then it was finally (finally!) my turn. After two very long years of waiting, somewhat bizarrely to the very day, I finally got my results in October 2013.
Being BRCA2 positive with my genetic variant (there are hundreds of known variants) put my risk of getting breast cancer somewhere between 70%-80%. Not as high as Angelina as the BRCA2 mutation carries less risk, but still very high. All things considered I think I took this news on the chin, as soon as my dad told me he had the gene I kind of knew deep down that I had it as I don’t physically take after my mum. I only cried that day because Billy Elliot is a very emotional musical. Honest 😉
I was immediately put under yearly MRI monitoring. At first, I was fine with just monitoring. Cutting off my healthy breasts felt counter intuitive and unnecessary. However, after my second MRI scan in January 2015 I had had enough. Scanxiety is a real thing l and I kept reminding myself of how high my risk was. I was fed up wondering after every scan if this was the year I would get breast cancer. I decided it was no way to live.
Reader, I chose to have a preventative bi-lateral mastectomy.
I had this preventative bi-lateral mastectomy with immediate reconstruction in December 2017. Was this an easy decision to make? Hell, no. Was the recovery difficult? God yes – more difficult than I imagined, both physically and emotionally. It’s a weird grieving process. It’s traumatic. It’s painful. It’s effectively an elective amputation which I stupidly tried to minimise because I didn’t have breast cancer.
Am I glad that I had it done? 100% yes. I no longer have the threat of breast cancer hanging over my head. My risk has been reduced from 80% down to somewhere around 5%. Hooray!
Not only do I no longer worry about getting breast cancer; aesthetically, I’m very happy too. I had a direct to implant reconstruction, placed partially under the muscle. I had a boudoir style photo shoot before my surgery to help me say ‘goodbye’ to the girls. Not only did this help me to emotionally prepare for my upcoming physical change, it also gave me an opportunity to compare my breasts as to how they used to be. Looking back, I genuinely think they look better now post-surgery. Thanks to my clever surgeons I managed to keep my nipples and I’m roughly the same size; both of which I’m thankful for. I didn’t want to feel as if I would be losing anything from having this annoying mutation.
I now have more headspace. I may not have had breast cancer, however just like having breast cancer, my life was effectively put on pause and everything revolved around hospital appointments and surgery consultations. It’s no exaggeration that it took over my life for many years. I was mono focussed – reading, researching and making decisions. Literally everything I did in the year leading up to my surgery date was to help me prepare for it. Work was something I did to pay the bills and I wasn’t even considering a new relationship.
Having a BRCA mutation does focus the mind, at the least the thought of having it definitely did. I broke up with my ex-partner in 2011 soon after I had my genetic counselling and gave my blood sample. It wasn’t the reason we broke up, however I believe it was a factor. The thought of spending the rest of my life with someone who moaned when I had a cold wasn’t really appealing. If they couldn’t care for me when I had a virus for a week (Susan, I’m playing a game), what would they be like if I had cancer? I imagine probably a bit sh*t.
Actually, it’s only just having written this that I’ve realised I’ve cut out some unhelpful people in my life (as well as cutting out unhelpful breasts) as part of this journey.
Reflecting back, I’ve definitely learnt a lot about myself. I had many ladies said to me that they couldn’t do what I have done. And once, years ago, I’m sure I felt like that too. However, I no longer remember that person. I’ve come to realise that people are stronger than they believe themselves to be.
More specifically, I am more stronger than I believed myself to be.
No one wants to become a member of the preventative mastectomy club; however, I’ve discovered there are definite upsides in joining the ranks. Not only have I futureproofed myself against breast cancer (I secretly call myself Susan 2.0 now) and can crack on with my life, I’m proud to part of a group of people who have had to make these difficult choices.
We are bold. We have courage and we can definitely do hard things. “
Thank you so much for your blog, Susan. So much of it resonated with us here at Valiant HQ. We love the idea of Susan 2.0 and we totally agree; we are bold and courageous and we can do hard things!
It’s Friday, it’s almost the weekend, it’s a beautiful day AND we have another amazing blog for you!
We’re thrilled to introduce today’s blog which is written by the wonderful Sarah. Sarah was one of the first people our founder, Eleanor, connected with on Instagram but it took Eleanor quite a while to realise that Sarah only lives a few miles away!
Sarah works full-time as a social worker having retrained after being diagnosed with breast cancer at the age of 35. In her spare time she is a trustee of registered charity Flat Friends UK, and she is the founder of flatterfashion.co.uk.
Since she had a mastectomy without reconstruction, Sarah has been developing a fabulous resource of tips for dressing flat after single or double mastectomy – which can be found on her website or in Flat Friends’ patient booklet “Living without reconstruction”.
Sarah is also currently completing a year long “Outflat” fundraising campaign in aid of Flat Friends.
Without further ado, here’s Sarah!
“It’s been said that being diagnosed with cancer is like sitting an exam in a foreign language you haven’t had time to learn. We have to rely on our healthcare team to translate for us and we go online in search of exam tips.
On 18th December 2014 I was diagnosed with a fast growing invasive breast cancer in my right breast after finding a small lump behind my nipple two months earlier. On instantly declining the idea of reconstruction my breast care team warned me I would be “very flat” and wouldn’t be able to find nice clothes. The Breast Cancer Care patient booklet on clothes told me that women living without reconstruction who don’t wear prostheses could “disguise” their chest by wearing scarves and loose fitting tops. I searched online: “Which clothes suit a flat chest?”, “Post-mastectomy fashion”, “Clothes without reconstruction”, “living and dressing flat” (and every configuration of those words you can imagine). A website about living flat had one page about clothing but frustratingly gave the same advice of baggy tops and scarves.
I was 35 and being told that if I didn’t reconstruct then I would need to spend the rest of my life concealing my body; as if the public shouldn’t be confronted by a woman without two breasts. Another thing which struck me was that there were only two varieties of living flat portrayed online: either needing to cover up, or wanting to appear androgynous. On finding Flat Friends a few months later I realised that’s far from the truth. “Flat” is the space where a breast once was, it’s not the whole of your chest nor how you choose to present your chest to the world. All women living without reconstruction after a single or double mastectomy – whether they choose to wear prostheses always, sometimes or never – are “Living Flat”.
After many days and weeks scouring social media I found two women in the UK and one in the US who were open about living flat and sharing photos of their daily lives without a strategically placed scarf in sight. I genuinely thought we must be the only ones; that everyone else was hiding in plain sight, or having recon. I imagined I wasn’t the first woman to be in this position; doubting a gut instinct because of how we’re expected to look. I quickly became concerned that some may agree to have reconstruction based on their team, cancer charities, or the internet telling them that the alternative will be unrecognisable and uninhabitable.
The thought that there may be women getting dressed each day in a cloak of secrecy, fearing if they do not obscure their chest then they risk offending society, inflamed an idea to create the resource I had been looking for. Within a couple of weeks of having my mastectomy I had worked out how to build a website and uploaded my first post: “The One Where I Tried On Everything In My 34DD Wardrobe”. I was having to start from scratch working out which fabrics, styles, shapes, designs, seams, and darts would flatter my new body shape.
The day before each chemo I would use my short-lived energy to go to a high street store and try on clothes. I photographed and documented each discovery for my website and social media, whilst picking out themes and criteria which eventually became my list of fashion tips for dressing single or double flat chests. Just as “Living Flat” is an inclusive term so is “Dressing Flat”. Dressing Flat is not the preserve of those who have no breasts, and is not describing an attempt to appear flat. It’s what each of us does every day when we pick out which top or bra to wear.
After five years of mastectomy fashion blogging I have compiled a wardrobe of clothes I feel comfortable and confident in. A huge variety of colours and prints, frills and ruffles, floaty and fitted. Everything from workwear, sportswear, and evening gowns to swimming costumes and bikinis. Plus a padded crop top and a pair of Knitted Knockers. That doesn’t mean I don’t have days when I think nothing looks right and I declare ‘I have nothing to wear!’ – that’s something that happens whether you have two breasts, one, or none. Most days I’m oblivious to my chest’s appearance – it’s my normal and I’m comfortable in my body. Some days I’m acutely aware I don’t have two breasts and I’m sure everyone is looking at me trying to work out what’s missing. But I don’t think you can tell that from my posts because online we are encouraged to share only our best moments – the enviable events; the picturesque location; an emotive attention-grabbing post, or the perfect outfit because they’re what get the most likes and comments.
I’ve never been your typical fashion blogger or instagrammer; rather than wanting to be an influencer I just want to create practical content for women to use when they’re wondering if they’ll be able to wear a bikini, a smart work outfit, or an evening dress if they don’t have reconstruction. The aim is to spare the next woman the initial ground work and trepidation when navigating clothes shopping without two breasts by sharing the basic principles. The rest – finding our own style and experimenting through trial and error – is something we each have to do as individuals, just as we did the first time round as teenagers and young women working out what suited us and reflected our personalities. Over the past couple of years it’s been exciting to see more women sharing their own flat style, either in the Flat Friends seasonal fashion blogs on my website or by starting their own personal Instagram accounts.
For five years I have just shared my latest shopping trips; focused posts about swimwear or evening wear, or the occasional noteworthy outing or outfit. I don’t usually post on a daily basis; so, I decided that in 2020 I would set myself the challenge of sharing an unfiltered selfie everyday in my outfit of the day – my “outflat” outfits! I hope that by sharing 366 days of dressing without two breasts others who are feeling self conscious will see that Dressing Flat isn’t about perfectly staged photos or needing to validate yourself to others; it’s the reality of picking out something to wear day in day out. Finding clothes that you feel comfortable in, and of looking at your reflection as you go about your day and recognising yourself looking back is the only thing that matters. Don’t let your team, the internet or social media trick you into believing you need to completely re-imagine who you are or be taught how to dress yourself. Find inspiration from others; feel empowered to try different styles, and why not share what you discover to hearten the next woman searching for ideas!
As well as creating useful content I hope my #Outflat campaign will also raise money to support the work of Flat Friends UK, a charity which is dedicated to supporting women who have had single or double mastectomy surgery without breast reconstruction, including those who may face such decisions now or in the future. I am very proud to be a trustee of Flat Friends UK: we believe living without reconstruction is a positive outcome and work to normalise living without two breasts and providing support to women living flat, including those waiting for delayed reconstruction. You can find out more at www.flatfriends.org.uk and you can sponsor me at uk.virginmoneygiving.com/SarahCoombes3“
Thank you so much, Sarah, for sharing your story with us today. If you haven’t checked out Sarah’s #Outflat campaign, we strongly advise you to do so – we love seeing the wonderful outfits Sarah pulls together everyday!
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!