From Unwritten to Rewritten Me
TL; DR: In a nutshell
This article originally appeared in the 2023 Breast Reconstruction supplement to Plastic Surgery News, published by the American Society of Plastic Surgeons.
After being diagnosed with breast cancer in 2017, I struggled to find clear, supportive information about breast reconstruction.
Sharing my recovery on Instagram under #100DaysDIEP on Instagram connected me with a global community, and showed me how powerful open, honest conversation can be.
I created the Breast Recon 101 Live Q&As to fill the information gap and launched the BRA-va art campaign to raise awareness of breast reconstruction on a global scale.
In 2022, I launched Rewritten Me, Australia’s first podcast about breast reconstruction, to give women the evidence-based info and support I wish I’d had.
Many women still aren’t offered all their reconstruction options despite it being publicly funded in Australia.
Reconstruction isn’t about going back to who you were. It’s about choosing what’s right for you and rewriting your story on your terms.
In 2017, I was diagnosed with invasive pleomorphic lobular breast cancer in my right breast. I was 46. Initially I kept my diagnosis private, and only told a few people. Now I talk – and write – about it every day to raise awareness of breast reconstruction and support women in our community.
In 2018, I had neo-adjuvant chemotherapy, a skin-sparing mastectomy and radiotherapy. I was absolutely devastated when I was told I needed a mastectomy. I didn't know anyone who'd had a breast reconstruction and had no idea about the different types of reconstruction.
When I heard about my breast reconstruction options, it gave me hope that I could be 'me' again. I found reconstruction an empowering part of my treatment, but it was hard to find information about it. I was told by my Australian reconstructive plastic surgeon to look to America for up-to-date information, which I did. I found some amazing evidence-based resources that were a huge help, but I still had lots of questions – lots!
In 2019 I had a unilateral DIEP flap reconstruction, when tissue was taken from my tummy to reconstruct my breast. I micro-blogged about my recovery on Instagram for 100 days (#100DaysDIEP) under my then Instagram name of @unwrittenme.
Unwritten me
I was stunned when I was first called back for a biopsy after my mammogram. I’d been generally unwell, but I didn’t have any noticeable lumps or bumps. I adopted a glass-half-empty ‘logic’ and, despite not knowing the results of the biopsy, assumed that I had breast cancer. As it turned out, I did.
I was mentally unwritten by my diagnosis. However, as I started to understand all the unknowns that came with it (scan results, pathology, surgery margins, side effects), I realised that I couldn’t catastrophise and assume the worst.
Inspired by Natasha Bedingfield’s song ‘Unwritten’, I flipped the word to mean something that served me better: nothing was ‘written’ until it happened. It wasn’t yet part of my story – it was unwritten.
‘Today is where your book begins
The rest is still unwritten’
I met a wonderfully supportive community on Instagram through sharing my #100DaysDIEP as @unwrittenme. Then, in 2020, I had my second-phase surgery, when I had a nipple reconstructed and my abdominal ‘dog ears’ removed. This was combined with an abdominal hysterectomy and oophorectomy. Again, I shared my story daily on Instagram, this time under #100DaysDIEP2.
I met a wonderfully supportive community on Instagram through sharing my #100DaysDIEP as @unwrittenme. Then, in 2020, I had my second-phase surgery, when I had a nipple reconstructed and my abdominal ‘dog ears’ removed. This was combined with an abdominal hysterectomy and oophorectomy. Again, I shared my story daily on Instagram, this time under #100DaysDIEP2.
Breast Recon 101 Live Q&A on Instagram
Treatment for breast cancer in Australia is among the best in the world. But when it comes to reconstruction, many women say they don’t feel they were given a choice in what reconstruction they had. Some aren’t offered reconstruction at all, even though it’s funded by Medicare, our public healthcare system.
And that’s what I started to hear from women on Instagram. Women who’d had a reconstruction would tell me they felt they weren’t offered all possible options, or they weren’t prepared for the reality of surgery – mentally and emotionally, as well as physically. I also heard from women who were considering reconstruction and wanted more information. And not just about the surgical side of things, but the reality of what life is like after reconstruction.
In 2021 I devised the Breast Recon 101 Live Q&A series. I hosted the first with Australian reconstructive plastic surgeon Dr Joe Dusseldorp. We had so many questions and the session went on for over an hour! It was clear that there was an information gap, and I hosted more Live Q&As through 2022. We had questions from women who were planning a reconstruction, but also from women who wanted to know more in case they needed to support a loved one in the future.
rewritten me
Deciding what reconstruction is right for you is an overwhelming process, and the medical terminology is confusing. I want anyone who is having a mastectomy to know what all their options are, to know what’s involved in their surgery and to feel confident about advocating for themselves, so they can decide what’s right for them and have a say in how they rewrite their story.
So, this year I launched Rewritten Me, Australia’s podcast about reconstruction after a mastectomy. On the pod I talk to leading surgeons and medical professionals, as well as women who have lived and felt experience of reconstruction.
I’m passionate about open access to evidence-based health information so that we can make decisions about our health that are right for us. I also want to raise awareness of reconstruction with people who don’t have a diagnosis.
As more and more of us are fortunate to live life after a cancer diagnosis and want a good quality of life (not just 'surviving'), it’s increasingly important that our experiences are talked about, both within the cancer community and outside it.
Putting BRA Day on the map!
I launched BRA-va art to promote Breast Reconstruction Awareness Day – or BRA Day, as it’s known. BRA-va art is a social media campaign that asks people to create GPS ‘art’ when they exercise using the free exercise app Strava and tag @bravaartoffical on Instagram.
It’s a fun way to raise awareness about breast reconstruction options after mastectomy. Last year people from America, Europe, Asia and Australia took part. They ran, walked, kayaked, cycled and skied to ‘draw’ BRA-va art such as hearts, flowers and faces, as well as reconstruction references, including ‘DIEP’ and ‘TUG’. And, of course, breasts were popular!
We want even more people to design BRA-va art on BRA Day this year (18th October). I’d love it if you, your friends, family and colleagues would join us to help put BRA Day on the map – literally!
Design an exercise route in any shape you want and share it on Instagram with a @bravaartofficial tag. It’s as simple as that!
Do it
Map it
Share it
Tag it
Check out the BRA-va art Instagram account @bravaartoffical for inspiration and ‘how to’ guides. There’s no fundraising – just fun raising!
I would never have wished for it, but some good things have happened because of my breast cancer diagnosis. I have connected to an amazing community of women online who have helped me get through one of the hardest times of my life; I can never thank them enough. Now it’s time to ‘share it forward’ to support those who will, sadly, come after us. And I need your help! #LetsDoThis
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Read the digital copy of this article in Breast Reconstruction 2023 by Plastic Surgery News.
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Rewritten Me on Spotify
Rewritten Me on Apple Podcasts
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