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’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!
We have another fabulous guest blog for you today. It’s a real pleasure to introduce Alison (@alisonwillie8). Alison describes herself as a busy wife, mum of two, receptionist at Leeds Gymnastics Club, business owner, proud Sheffield Wednesday fan. She says she is half way to being a proud previvor!
Alison has written about her experiences finding out about the history of breast cancer in her family, undergoing genetic testing and ultimately the decisions she has made upon learning about the BRCA1 genetic mutation. Here’s Alison’s story:
“I sat in the doctors surgery aged 20 and told my GP that I was worried that breast cancer was going to come for me. Dramatic perhaps, but my nan had just died of it not long before. She’d had it twice and watching her suffer had affected me deeply. Despite my concern, the doctor did not seem worried and I was sent on my way.
Fast forward 18 years and there I am again, sat in my doctors surgery. This time advising them that the BRCA1 gene mutation had been discovered after my nan’s only surviving sister had undergone genetic testing. This time, luckily, I got a very different response.
I was asked to draw a family tree and mark those who’d had a cancer diagnosis and or had died from it. I knew there was a history running down my dad’s side of the family but only once it was there in black and white did it really hit home just how scarily real this was.
Breast cancer had taken the lives of so many relatives and there was absolutely no way that I was going to become another name on that list!
I planned to pursue the testing on my own, without anyone knowing. I didn’t want people worrying and just wanted to know where I stood so I could do something about it.
When the family history forms arrived though, it was obvious that it just couldn’t work that way. There were too many questions that I simply didn’t know the answers to.
A few months later a letter arrived with an appointment to see the genetic counselor. I didn’t like the sound of that! Why did I need to see a counselor when I know what I wanted?!
I convinced myself that they would try and talk me out of it, that they’d say I didn’t need testing. I spent days before the appointment planning how I would argue my case.
In reality I couldn’t have been more wrong. They were nothing but supportive. The genetic counselor completely understood that I was a mum, that I needed to know if I carried the gene mutation too, not only to make sure I was alive to see my children grow up but also so I could prepare them for the chances of also carrying it. The bloods were taken there and then and so began the wait.
The call came during our family holiday.
I knew what she was going to say. I had long since made peace with the likelihood of it being positive and as crazy as it sounds I felt relieved to know now where I stood.
That’s not to say I wasn’t upset. I was. That word, positive, had now changed things. Yes, it meant choices regarding my body but that’s not what got me. It was the 50/50 odds of me having passed it on to my kids that I found hard to accept. All a parent wants is to protect their children and I felt like I’d failed in that.
Always one to be in the know, I set about researching. Along the way I found not only information but people, just like me. I call them my “BRCA buddies”. They are such amazingly strong women. So open and honest and always prepared to share their stories, even the gory, personal bits. It was just what I needed. They were getting through their journey and so could I. And maybe I could repay the favour in the future and help other people too. I felt empowered.
Appointments came through pretty quickly from there. Specialist breast nurse, breast & gynae surgeons and my first round of annual screening.
Anyone who’s been through a breast MRI will know what an odd experience it is. I don’t think I’ve ever laid in a more uncomfortable position; face down, arms overhead with boobs dangling down through two holes in the table, oh and don’t forget the evening primrose capsules they tape to your nipples! Writing that, I have to laugh but at the time it’s not quite so funny.
A couple of days before Christmas I got a letter calling me back for more tests.
I called, desperately wanting to know what they’d seen. All they could tell me was that it was something on the right side, close to my arm pit. That was when I really did start to worry.
I tried to put it out of my mind. I didn’t want to spoil Christmas. Luckily, after a few anxious hours of what felt like endless mammograms and ultra sounds they decided that it was just my breast tissue and nothing to be concerned about. Phew! I was so relieved but I was then adamant, no way could I do this every year. For me there was no other option. I wanted rid of every part of my body that was going to try and kill me!
I’d always thought that I would have my mastectomy first as I deemed my boobs to be my biggest threat but while still waiting to see the breast surgeon I was offered a date for the hysterectomy and decided to just get one out of the way as soon as possible! I was fast approaching 40 and just didn’t want this hanging over for me any longer.
The operation went well and the recovery was quick. I was so glad I’d done it. I now felt like things were moving and it was a relief.
A few weeks post surgery I was offered a date for my mastectomy. March 25th. I couldn’t believe my luck. Both operations would be done and dusted. I’d be able to celebrate the big 40 with new boobs… that wouldn’t need holding up by a bra! For the first time in years I was going to wear whatever dress I wanted without having to worry about scaffolding!
3 days before the big day, COVID happened and my mastectomy was put on hold and now we wait again.
While completely understandable It was also frustrating. I’d packed my bag. I’d prepared the kids. My husband and I had prepared ourselves.
Lockdown brought many positives though. We got to spend more time together as a family, we took steps to get fit and be more healthy and in a bid to do something other than attempting to home school my 12 year old daughter and 13 year old autistic son, I set up my own business with Forever Living, sharing high quality aloe Vera products to support people trying to look and feel better.
Hopefully I won’t have too long to wait now. I can’t wait to finish this journey and be able to wear my previvor badge with pride!
I want to finish by saying a toast…. Here’s to those who are no longer with us, but who in death gave us the key to knowledge. The knowledge that gives us choices. Choices that mean we are in control of our own destiny and also mean we get to see our kids grow up. Cheers everyone. “
Thank you, Alison, for trusting us to share your story. We know you were apprehensive about the act of writing it all down but you needn’t have worried – we think your writing is wonderful and approachable and we empathised no end. (We vividly remember the undignified MRI set up!) Your story is important and we are honoured to share it!
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