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Katie Before Cancer

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Katie Before Cancer

🌻Stage 4 • BC Thriver Since ‘18
💁🏻‍♀️Telling Like It Is
📍Eora Nation ?

05/08/2026

I’ll be totally honest: over the past six months, I’ve felt a lot of advocacy burnout.

There is a particular kind of exhaustion that comes from repeatedly sharing the hardest parts of your story, hoping that somewhere along the way it helps create a better system for the people who come after you.
But situations like this cannot be ignored.
Living with metastatic breast cancer means uncertainty is already part of my everyday life.

I don’t know what my next scan will show. I don’t know how my body will respond to treatment. I don’t know how much time I have.

But access to the treatment my oncologist recommends shouldn’t be another uncertainty I have to carry.

Yesterday, I had the honour of joining BCNA as a consumer representative and sharing my experience in front of decision-makers, alongside other incredible advocates from the breast cancer and YA cancer community.

I was there not only to speak from my own lived experience, but to represent the collective voices of so many people who felt fear, letdown, confusion and frustration when the news about Zoladex was communicated in a way that left many patients searching for answers.

We shared what this experience was really like on the ground, and why better communication matters.

Because when (sadly, not ‘if’) a medication is discontinued again, patients deserve to hear important information directly from the people responsible for their care and support.

I hope our feedback was heard loud and clear, and that it helps create meaningful change for the future.

Because behind every medicine, every announcement and every healthcare decision are real people whose lives are directly affected. 🩷

07/12/2025

20,950. That’s how many people live with metastatic breast cancer in Australia.

Last week I was in Canberra for a huge moment with BCNA. We were at Parliament House to announce that finally, people living with metastatic breast cancer had been counted in Australia. Counted. Seen. A world first. Something the community has been fighting for over decades.

Two years ago, I sat downstairs in that same building and listened to how we still weren’t counted. How we’d been invisible in our own healthcare system. I honestly didn’t think I’d live to see the day I became a number that mattered. And now Australia is the first country in the world to do it?! WILD. Hopefully what we started in London with the UK and Canada means they won’t be far behind.

And then… they asked me to be on the panel. No big deal, just casually represent our MBC community during one of the biggest announcements in this space. What would I even say? All I had was lived experience; the experts could speak to the numbers, but none could speak to what it feels like.

To how lonely this is. How cruel it is to face your mortality before 30. The endless appointments, medications, side effects, and the dreams you let go of because life won’t be long enough. But also: tiny pockets of hope. A new treatment buying time. Small joys that feel huge when you’re living on borrowed time. Tears of relief when scans are stable. The eye roll when someone says you’re “too young for this”. Now, maybe, we’ll finally get systemic, social, political support because we count.

But the truth is: I felt like I didn’t deserve to be there. Like I haven’t shouted loud enough or been bold enough. This year has been a tug-of-war between advocating, hiding, and being absolutely exhausted. My body has felt slower and more vulnerable than ever.
An hour before the event, I was horizontal on the bed; sweating, nauseous, dizzy with anxiety, dealing with thrush (because of course). Minutes from pulling out. It all felt too much. But I showed up! Just like I’m showing up posting this now. I get there in my own time, in my own way. And that’s what really ‘counts’

Being counted isn’t the end. It’s the beginning of what comes next. ⬇️

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