Survivorship: The Part We Don’t Talk About — But Should
I’m 11 years post my second breast cancer diagnosis, and I’m grateful every single day to still be here. I work five days a week, I show up, I contribute, and I keep moving forward. I’m proud of that. But I’ve also learned that survivorship is far more complex than anyone prepared me for. After Taxol, 5‑FU, and a DIEP flap, I now live with: permanent hair thinning, weight gain, early menopause, neuropathy, hand‑function issues, all‑over body cramping, heart failure, cataract, blocked tear ducts, damaged veins, and numbness from nerve damage. I’ve adapted. I’ve rebuilt not just physically but mentally/emotionally. I’ve learned to live in a body that’s different from the one I had before. But here’s the truth: we don’t talk about this part. Not with friends. Not with colleagues. Often not even with each other. We carry the long‑term effects quietly. We push through because that’s what survivors do. We’re grateful — deeply — but gratitude doesn’t erase the challenges. I’m sharing this to encourage honest conversations. Because survivorship is real work. Because so many of us are navigating long‑term effects in silence. Because speaking up helps others feel less alone. If any of this resonates with you, your experience is valid. We can be strong, grateful, and resilient — and still tell the truth about what survivorship really looks like.🌱Wednesday Wellness - 13May26 - Living with & beyond cancer🌱
When we think about going through breast cancer, we often think about the time between diagnosis and treatment. The reality for many, is that this remains ongoing, involving huge lifestyle changes, particular for those in our metastatic community. 🌿Living with breast cancer often means navigating a whirlwind of appointments, treatments, side effects, and emotions that don’t always make sense. Some days you may feel strong and hopeful, and others exhausted in ways that go far beyond the physical. It can feel like your world has shrunk, while at the same time the emotional challenges keep building. 💫For those who no longer need treatment, people often expect a quick return to “normal.” But the truth is, life doesn’t go back to the way it was, and that’s not necessarily a bad thing! Many people discover a new perspective, a deeper appreciation for small moments , a redefined sense of purpose, or a quieter, stronger version of themselves. What often goes unspoken is that survivorship can be just as complex as treatment. There may be fear of recurrence, lingering physical impacts, or the emotional process of rebuilding confidence, identity, and trust in your body. Healing doesn’t happen overnight, and it doesn’t follow a straight line. ✨If you're interested, you might find this VCCC webinar helpful in navigating this stage. Led by experts in the field, this event brings together insights from clinical care, research, and lived experience to help shape better outcomes for people affected by cancer. 🗓 Date: 22 June 2026 ⏰ Time: 1:00–2:00pm 📍 Where: Online This session will explore: The growing impact of cancer survivorship What high-quality survivorship care really looks like How multidisciplinary collaboration can improve long-term health and quality of life 👉 Register here 🌼If you’re walking this path, please know: It’s okay to not have it all figured out It’s okay to grieve what was lost while still feeling grateful It’s okay to move forward at your own pace, one step at a time And if you're supporting someone living with or beyond cancer, one of the greatest gifts you can offer is simply presence, listening without trying to fix, and standing alongside them in both the highs and the hard days. Living with and beyond cancer is not just a story of survival, it’s a story of resilience, adaptation, and quiet courage. It’s about learning to hold both vulnerability and strength at the same time. Wherever you are in your journey, you are not alone, our wonderful little community is here walking beside you 💛🩺LeaN On Program: reducing the risk of lymphoedema
LeaN On - a research initiative led by Professor Bogda Koczwara and developed by Flinders University in partnership with BCNA, was developed in response to a long‑standing gap in survivorship care. Lymphoedema is a chronic condition affecting the arm or hand that can develop weeks, months or even years after breast cancer treatment, yet many people report receiving little guidance about early warning signs, risk reduction or when to seek support. LeaN On is an evidence‑based digital platform designed to support people who are living with, or concerned about, lymphoedema after breast cancer. The platform guides users through a simple 12‑step online journey, with each step offering small, manageable and practical information to help people: understand what lymphoedema is recognise early signs and symptoms take actions now to reduce risk know when and how to seek professional support The platform is currently being trialed through a research study, evaluating how lymphoedema support can be delivered online, including both self‑directed and nurse‑supported options. Its online design allows people to access guidance regardless of where they live, including in regional and rural areas where access to specialist care can be limited. Consumer perspectives have been embedded throughout the project. Participants for co‑design activities were recruited through the Review and Survey Group, and BCNA supported the research by appointing a trained Consumer Representative to the project team. This ensured lived experience informed both the development of the platform and the research approach. Both the platform and the study underpinning its development have now been published, and people affected by breast cancer are invited to trial LeaN On by contacting [email protected] Learn more about the LeaN On project: BCNA overview article Flinders University article and trial information Published study🎧 Have you connected with our podcast: Upfront About Breast Cancer
Within our Online Network, we know how important it is to feel informed, supported, and connected at every stage of a breast cancer experience. One of the many ways we support our community is through our Upfront About Breast Cancer podcast. This is a resource created for you, where real stories, expert insights, and practical guidance come together in a way that is easy to access whenever you need it. A much loved part of the podcast is the What You Don’t Know Until You Do series, hosted by Dr Charlotte Tottman. Dr Tottman is a psycho oncologist who has supported many people through the emotional impact of cancer and, following her own breast cancer diagnosis. Her thoughtful and compassionate approach creates a space where the emotional side of breast cancer can be explored openly, helping listeners better understand their own responses and feel less alone in what they are experiencing. 💬 Real conversations from our community Upfront About Breast Cancer brings together the voices that matter most. People with lived experience share their stories alongside healthcare professionals and experts, creating conversations that feel both genuine and reassuring. These discussions reflect the reality of breast cancer. They explore the shock of diagnosis, the emotional highs and lows, and what it can take to adjust to life during and after treatment. For many, simply hearing someone else say “me too” can make a powerful difference. 🌱 Supporting you at every stage We know that every experience is different, which is why Upfront About Breast Cancer is designed to support people across all stages. Whether you are newly diagnosed, living with metastatic breast cancer, supporting a loved one, or moving through life after treatment, there is something here for you. Episodes cover important topics such as what to expect after diagnosis, how to communicate with your healthcare team, managing side effects, and navigating the healthcare system. This means you can return to the information in your own time, absorb it at your own pace, and feel more prepared for the next step in your journey. 👉 Listen to Upfront About Breast Cancer podcast here. 🌸 A gentle reminder Some topics may feel emotional or challenging. Please take things at your own pace and look after yourself as you listen. Support is always available, the online community and our Helpline on the phones are here for you. Have you listened to Upfront About Breast Cancer? We'd love if you shared: an episode that stayed with you something new you learned a conversation you would like to hear in the future 💪 Your experience may help someone else going through a challenging part of their journey. We are stronger, together.🏔️ 6 People, 5,895 metres, and one incredible cause
We’re in awe of the incredible team of six (and support crew) who recently climbed Mount Kilimanjaro to raise awareness and funds for Breast Cancer Network Australia. 🌍✨Initiated by BCNA member Kristal, who dreamed of trekking the Roof of Africa with friends to fundraise, this journey was brought to life with the help of @Inspired Adventures fundraising agency. But “trekking” doesn't quite cover what this group faced. 💪The team endured some of the toughest conditions their guides had ever seen. They battled snowstorms, gale-force winds, and altitude sickness, yet they persevered through every hurdle. For Kristal, this was deeply personal. With a breast cancer experience of her own, she was joined by her partner, close friends, and teammates who hiked in memory of their mothers. 👣❤️ ‘Trips like these are truly once-in-a-lifetime experiences. They build character and test you in ways that go far beyond the physical – mentally, emotionally and spiritually. This trek reminded me that I am capable, that I am strong, and that I have a powerful mindset and willpower to face adversity and tough moments.’ - Kristal If you'd like, you can donate to Kristal & team's fundraising page at: 🔗 https://bcna.grassrootz.com/bcna-kilimanjaro-2026
Raelene Boyle on Julia Zemiro's Home Delivery today (repeat)
Raelene Boyle has been a huge advocate for Breast cancer since her own diagnosis with BC nearly 30 years ago - what a GREAT spirit she has! Oh My Gosh ... I can relate to SO many things that she discusses with Julia Zemiro! LOL Raelene was diagnosed at the same time that the founder of BCNA, Lyn Swinburne was first starting her support for women with breast cancer (out of a Bakers Delight office!) just under 30 years ago. She was then diagnosed with Ovarian Cancer, twice, then Epilepsy! She is still going strong & is an Ambassador and founding board member of BCNA: https://www.bcna.org.au/resource-hub/podcasts/upfront-about-breast-cancer/upfront-about-breast-cancer/episode-21-raelene-boyle-on-pulling-herself-out-of-the-darkness/ You can watch her interview with Julia Zemiro on ABC here: https://iview.abc.net.au/show/julia-zemiro-s-home-delivery/series/6/video/LE1761H006S00
Today's feelings in poetry
Lucky So lucky, people say. That they caught it when they did That it hasn’t spread That they got it all That I have insurance So, so lucky. That my friend told me about her cancer That I finally moved my arse and Went and had that mammogram That I live in the lucky country So lucky That my prognosis is good That my job will be there for me That I am surrounded by family and friends With their love, soup and casseroles. Lucky. That my new set are perkier Smaller, Scar-rier, numb-ier. A bit lopsided Like me. Some days though, I just feel A tiny bit Unlucky.
Hi from mum2jj...16 years on.
Hi all, Firstly I don't get on to the main forum discussion much these days, between work and being a group leader of the Choosing Breast Reconstruction group. I've been meaning to pop on for days and share some good news and hope to those newly diagnosed. It was my birthday last week, and the day before it suddenly struck me. I was about to turn 63 and was not sure how I felt about it, and then it dawned on me. That very same day 16 years ago (day before my 47th birthday) was the day I first heard the words "you have breast cancer". It's amazing that I am now at the point that i don't think about it all the time, and I had almost slipped into feeling sorry for myself that I was getting "old". I very quickly changed perspective to gratitude! I now have 2 adult children who were primary schoolers at my first diagnosis. I did not think I would get there. I really have much to be grateful for. My breast cancer story was not always easy. I had a recurrance 18mths after first diagnosis. Yep got to do chemo twice and radiation. Along the way I have lost some beautiful friends and had others go through second diagnosis and mets. It really is a lottery. However I know how l have been lucky up until now and wanted to share a good news story for those recently diagnosed and those going through a recurrance. My heartfelt love to all those struggling and I hope my story can encourage those newly diagnosed. I vow never to whinge about my age again. much love Paula xx
Relationship damage from cancer
Has anyone experienced significant damage to their relationship from a cancer diagnosis? My partner has stayed by my side and supported me throughout my treatment, but now that I'm coming out the other end into survivorship, instead of bringing us closer together, we are in a very bad place. He resents me because he has lost a year of his life due to my diagnosis and treatment. He has a lot of anger towards me and has been pushing me away for months, and it's causing me a lot of pain and extra stress which isn't good for me. Pushing me away is his defense mechanism because he is scared he will lose me, but it feels as though has already written me off. We both very much love each other, but we aren't in a good place and I'm so hurt that he is blaming me for something that was out of my control instead of being grateful that he didn't lose me. I feel so alone and like I have to hide my fear and emotions from him because he cannot handle it. Has anyone been in a similar position and come back from it?
Instagram Fam?!
Hi all :) I was just wondering if anyone else is sharing their Breast Cancer journey over on Instagram? I set up a page recently as I want to spread awareness about the realities of treatment & survivorship. I didn't quite have it in me as I went through the first part of my treatment (2 x surgeries, chemo & rads) to share as I went, but now i'm in the next phase (Ribociclib for 3 years + Zoladronic Acid 6 monthly + a bunch of other meds from side effects) I am starting to share more & recount my experiences. It's been lovely to connect with others as well. If anyone would like to follow you can find me at @breastcancerbanter
