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!
Today we feel incredibly fortunate to be able to introduce you to the wonderful Katie who you may also known as @kates_cleavage. Katie is an English teacher and writer from Hertfordshire in the UK. Last year she was diagnosed with secondary breast cancer (with mets in her left hip) and now, in her own words, she is navigating stage 4 breast cancer at the age of 30.
We hope you enjoy Katie's blog as much as we have. We're sure you'll agree that it so beautifully expresses those complex emotions that we know will be (sadly) so familiar to so many women in this community.
The Big Bad: Recurrence and Life Beyond It
"I want to start by sharing an excerpt from the memoir I penned during my primary diagnosis at twenty-one. I wrote over 40,000 words during my treatment; it was a means of navigating the unknown, of making sense of the changes I was experiencing. The last thing I penned, before abandoning the project for living beyond cancer, is below:
‘Fear pulsates through my temples, pressing hard against my skull, urging my thoughts to enter my brain at a much faster pace than I would like. Here in the breast clinic waiting room at the University College London Macmillan Cancer centre I find myself repeating the same question repeatedly to myself and to my nervous father sitting next to me: what do I do if it has come back? I am wondering if my cells have begun again to fiendishly tangle together, like a pair of messy shoelaces, forming that suffocating mass inside my breast. Over the past year, I have experienced a multitude of phantom aches and pains. At one point, I went to my oncologist with a persistent tenderness in my ribs that an ultrasound deemed entirely fabricated by my fanciful imagination. On another occasion, I became entirely obsessed with a supposed swelling in my abdomen, which again did not prove to be a massive tumour crawling like poison ivy through my intestines. This is the nature of the fear that I am sentenced to live with for the rest of my life. The inconsolable fear of reoccurrence is enough to tempt you into putting an end to contemplations of a happy future. My fear is not especially unique, from reading other women’s blogs I have noted a serial trend in those entries made as soon as the wheels of remission start gaining motion. We ‘survivors’ make it our business to fixate on the probability of reaching the finishing line, of touching base at the house of complete remission.’
That was the last I wrote on cancer back then. You see, I wanted to step outside of that fear, relegate it in my mind. I suppose I mainly succeeded. For five years of remission I qualified to become a secondary English teacher, travelled, fell in and out of love, lived my life with a view to having a long future.
The Big Bad did return though, in 2016 with a new primary tumour in my left breast. I felt somewhat frustrated that all that fear had come back to justify itself. The new tumour was found in my yearly scan: an essential part of the monitoring process after any cancer diagnosis. I will wrap this chapter of my life up by saying that it was dealt with via a second mastectomy and little else medically speaking. Caught early, I did not have to endure any further treatment. Part of me wonders whether this was a mistake. However, it does not serve me now fixating on this. One again I moved on, but emotionally the fear had resurged with this second diagnosis before thirty.
In 2019, slap bang in a brand new year, I was diagnosed with secondary breast cancer. A dull hip ache sent me advocating for scans and investigations. This wasn’t easy, I had to have some very difficult phone calls to get the secretary to organise a bone scan. What’s more, it took four tests, including a bone biopsy, to determine that it was cancer. How do I feel now? Sometimes tired, sometimes scared, but mostly alive. Knowing that you will need to dedicate your life to healing, one day at a time, is overwhelming. But I like to think that it is not outside of the realm of possibility. Fear is life limiting, it poisons your present moment, and that is all we really have, cancer or no cancer. I am not immune to fear: it resurfaces with every three-month scan. Scanxiety takes hold but not when I do not let it. As I write this, my results are next week. Until then I will focus on what I have: a lively, life affirming classful of kids ready to learn with me, a safe home that I can return to a place of self-care, and a dream that keeps me alive. I will finish my book, but it won’t be about cancer. Not directly anyway."
Thank you so much for sharing your wonderful blog with us, Katie. We can't wait to read more of your writing in the future!
We're super excited about today's amazing guest blogger. We're delighted to introduce you to Danielle. Danielle was diagnosed with HER2+ breast cancer in 2018 and, only a week later, she discovered that the cancer had spread to her liver. Danielle says lives in Kent with her husband, Tim, and their adorable daughter, Joey. She says that she doesn't let her disease define her; she uses it as her motivation to live every day to the fullest with her wonderful family. You can find Danielle @raising_joey where she talks about all aspects of living with incurable cancer.
In addition to sharing her own story on social media, Danielle is also one of the co-founders of @metastatic_mammas; an incredible support network for parents living with stage IV cancers.
Here's Danielle's story:
"Since being diagnosed with stage IV breast cancer in November 2018 aged 29, life has taken some weird and wonderful turns as well as some pretty heart-breaking and terrifying ones too.
After picking myself up off the floor for the sake of my 6 month old daughter at the time, I decided that I wanted to be a part of the changing narrative that is life with terminal cancer.
When I first heard that my breast cancer was incurable I was in complete despair. I searched high and low on the internet for stories of survival from other women with the same diagnosis. However, I couldn't find any.
What I did find was a whole host of ladies (and men) with all different types of cancers and they were all LIVING well with their disease.
I realised that I had to make this journey of mine through life, albeit a completely different one from what I had planned, a story that my daughter would be proud of.
I stopped moping around and started taking action. I had 6 rounds of chemotherapy as well as 2 continuous targeted therapy drugs, Herceptin and Pertuzumab that I still have now every 3 weeks. Whilst on chemo I decided that I wanted to raise money for cancer research by running 10k for Race for Life. I managed to get a group of us together and collectively we raised £6000. From there a fire was lit in me to keep sharing my story and keep raising money as my own defence against cancer.
I decided to apply to be the subject of a campaign called 'The Worlds Most Precious Stone' and actually got the part. A film crew from Paris followed my hair loss journey and made a lock of my hair into a yellow 1.59carat diamond to symbolise hope, strength and light. A Parisian jewellery designer then created it into a diamond necklace that was on display in The Cancer Centre for Immunology in Southampton Hospital for breast cancer awareness month in October 2019. The film was shown on billboards in Times Square and online and managed to raise over £11,000. The diamond necklace was given to me to pass on to my daughter Joey.
Since then, I have had many opportunities to tell my story and raise even more funds for charity including on my own social media where I tell all sides of the story about life with incurable cancer; the good, the bad and the ugly. I proudly raised over £2,000 during the UK lockdown by running a marathon in my living room; it took 8 hours and over 66,000 steps but I wanted to show the world that even in times of complete uncertainty, anything is possible.
I receive messages every day from young women telling me they are now more aware of their own bodies and actually check for changes in their breasts which I am so pleased to see.
However, the best messages I receive are from newly diagnosed cancer patients who have found my story and felt some hope that there can be life; a beautiful, happy life, for them too despite living with this cruel disease.
For anyone diagnosed with cancer there are really scary times, extremely tough days and complete uncertainty about the future. But they are all of the things that are out of our control. All of the beauty we find in life after the diagnosis, all the drive to make a difference, all the love we have for the simplest things and the happiness we find just to be here; they are all choices. We cannot control cancer... but cancer cannot control us either."
Thank you so much for sharing your story with us, Danielle. You inspire us every day!
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