Mucosal Melanoma Australia

01/09/2026

💜 WARRIOR WEDNESDAY — SHELLEY 💜

This Warrior Wednesday, I’d like to shine a light on one of our courageous MM warriors, Shelley, and share some heartfelt words she wrote a couple of weeks ago.

Shelley has had to endure many surgeries throughout her journey with mucosal melanoma, and she is currently recovering following yet another operation.

Her words capture something many within our community have been feeling… the sadness of losing fellow warriors, the fear those losses can sometimes bring, but also the extraordinary strength, friendship and hope we find in one another.

Being a warrior doesn’t mean we never feel frightened or acknowledge the difficult realities of this disease. It means continuing to move forward, holding onto hope, and allowing others to walk beside us through both the good days and the hard ones.

And there is so much still to hold onto.

There is finally research happening. There are new treatments and advances emerging. There are birthdays to celebrate, friendships to make, memories still to create and reasons to keep looking forward.

And, there is this community — reminding each other that whatever today brings, none of us has to face it alone. 💜

Shelley, thank you for sharing your heart so openly with our community. This Warrior Wednesday, we’re sending some of that love, strength and encouragement straight back to you as you recover. 😍

SHELLEY’S WORDS…

“Lately, the loss of so many of our fellow warriors has been weighing heavily on my heart. Every time we say goodbye to another member of this community, I feel such deep sadness—not only for them and their loved ones, but because it also brings a lot of fear for my and others own future.

This group has become so much more than a place to share information. It’s a family built on understanding, compassion, and hope. Watching so many beautiful people leave us is incredibly difficult and heartbreaking.

At the same time, I’m so grateful to be part of this community. You all remind me that none of us has to face this journey alone. Thank you for continuing to share your strength, kindness, and support, even on the hardest days.

Sending love to everyone who is grieving, struggling, or feeling scared right now. Please know you’re not alone. ❤️”

31/08/2026

💜 IN LOVING MEMORY OF CHRIS 💜

It is with an incredibly heavy heart that I share the news that our beautiful MM Warrior, Chris, has passed away.

Many of you will remember Chris from our MM Warrior series, where she so generously and courageously shared her story with our community through video.

There is something particularly difficult about writing these words about someone whose face, voice and story we have had the privilege of sharing here.

I was also incredibly fortunate, along with two of our other beautiful MM warriors, to have had the opportunity to meet Chris in person and spend precious time together. That is something I will always treasure.

Chris was more than a diagnosis. She was a woman with a life, a story, people who loved her, and a voice that mattered. By sharing her experience so openly, she helped bring mucosal melanoma from hidden to heard and helped others living with this rare cancer feel a little less alone.

Today we remember Chris not only as an MM Warrior, but as the beautiful person behind that title.

To Chris’s family, friends and everyone who loved her, we send our deepest love and condolences.

And to our MM community, who feel these losses so deeply — we hold one another a little closer today.

Thank you, Chris, for trusting us with your story.

Your voice was heard.
Your story mattered.
And you will be remembered. 💜

Rest peacefully, Chris.

31/08/2026

💜 IN LOVING MEMORY OF KATHRYN 💜

Today we honour and remember one of our MM Warriors, Kathryn, who sadly passed away after living with metastatic mucosal melanoma.

Kathryn first reached out to Mucosal Melanoma Australia, when she began treatment for metastatic disease, becoming part of this small but incredibly special community of people connected by a cancer that far too few understand.

Behind every diagnosis is a person. A life. A family. A lifetime of memories and love.

And Kathryn was very deeply loved.

Her husband, Chris, shared the most beautiful words to me about the woman he had spent his life beside. After more than 55 years together, he described Kathryn as an amazing woman and said that being with her for those years had been his privilege.

What a beautiful testament to a life and a love shared. 💜

Kathryn’s story is also a reminder of why this page exists.. to make sure that those affected by mucosal melanoma are seen, heard and never feel that they are facing this rare cancer entirely alone.

To Chris, Kathryn’s family, friends and all those who knew and loved her, we send our heartfelt condolences and the love of our entire MM community.

Today, we say her name.

Kathryn.

One of our MM Warriors.
A much-loved wife.
An amazing woman.
A life that mattered.

May you rest peacefully, Kathryn. 💜

Mucosal Melanona Ahustralia
From Hidden to Heard

31/08/2026

💜 REMEMBERING TWO OF OUR MM WARRIORS 💜

There are some posts that are incredibly difficult to write.

Our mucosal melanoma community is small, and because of that, every person who reaches out, shares their story or walks alongside another warrior becomes part of something very special.

Sadly, our community has recently lost two beautiful MM Warriors, Kathryn and Chris.

I want to honour each of these women individually, because behind every mucosal melanoma diagnosis is a person, a life, a story, a family and people who love them.

Over the coming posts, I will share a tribute to each of these beautiful women and acknowledge the place they hold within our MM community.

While these posts are incredibly sad, remembering our warriors and saying their names matters.

Kathryn and Chris — you were here. Your stories matter. And you will not be forgotten. 💜

Mucosal Melanoma Australia
From Hidden to Heard

27/08/2026

💜 INTRODUCING THE “YOU TOO?” MOVEMENT 💜
Connecting the Mucosal Melanoma Community

Something meaningful has begun with just two little words…

“You too?”

Recently, while talking about the beautiful friendships that can form between people living with mucosal melanoma, one of our MM warriors, my beautiful friend Judi, described it as the “You Too?” movement.

And I couldn’t stop thinking about it.

Because those words capture something incredibly special.

You have mucosal melanoma too?
You’ve been through this too?
You’ve felt this fear and uncertainty too?
You understand without me having to explain?

And then comes the answer that can mean so much:

“Me too.” 💜

So today, I would love to officially introduce:

The “You Too?” Movement

Connecting the Mucosal Melanoma Community.

And as part of this movement, I’m creating a private “You Too?” Messenger group — a safe, welcoming little space where people living with mucosal melanoma can find one another, talk, form friendships, support each other and simply be around people who get it.

This isn’t about medical advice.

It’s about human connection.

It’s about making sure that someone newly diagnosed doesn’t have to wonder whether there is anybody else out there like them.

It’s about turning “Am I the only one?” into “You too?”

If you are living with mucosal melanoma and would like to be part of our You Too? Messenger group, please comment below or send a private message to the Mucosal Melanoma Australia page. 💜

And if you’re already connected with another MM warrior, help us spread the words that started it all…

You too?
Me too.
We’ve got you. 💜🫂

Mucosal Melanoma Australia
From Hidden to Heard

25/08/2026

💜 WARRIOR WEDNESDAY
WARRIOR FRIENDSHIPS 💜

There is something incredibly powerful about finding another person who truly understands a journey you never imagined you would have to walk.

Mucosal melanoma is rare, and with that rarity can come a loneliness that is difficult to explain. You can be surrounded by people who love you deeply, yet still long to talk to someone who truly understands what it feels like to hear those words, face the scans, endure the waiting, navigate treatment and live with the uncertainty that follows a cancer like ours.

And then sometimes.. you find another warrior. 💜

Someone you don’t have to explain everything to. Someone who understands the fear behind “I have a scan coming up”, the relief of good news, the heartbreak of a recurrence, and why even the smallest milestone can mean so much.

These connections, become something incredibly special.
Warrior Friendships are born from circumstances none of us would ever have chosen, but friendships that remind us we don’t have to face this alone.

If you are living with mucosal melanoma and haven’t yet connected with another MM warrior, please reach out and message our page. We would love to help you feel connected to others who understand this journey.

Because when you’re living with something as rare as mucosal melanoma, finding someone who truly understands can turn “I thought I was the only one” into “I don’t have to walk this alone.” 💜

Mucosal Melanoma Australia
From Hidden to Heard

21/08/2026

💜 WHAT I WISH PEOPLE KNEW ABOUT MUCOSAL MELANOMA…

I wish people knew that melanoma isn’t always caused by the sun.

I wish people knew that mucosal melanoma can develop in places you cannot see.

I wish people knew that because symptoms can seem harmless - an itch, discomfort, a lump, bleeding, changes in bowel habits or persistent nasal symptoms — diagnosis isn’t always straightforward.

I wish people knew what it feels like to be told you have a cancer so rare that many people have never even heard its name.

I wish people knew how much courage it can take to keep walking into scan rooms, treatment rooms and operating theatres — again and again.

I wish people knew the challenges Australian mucosal melanoma patients can face in accessing treatment options — simply because our cancer is rare.

But most of all…

I wish more people knew mucosal melanoma exists.

Because awareness begins with a conversation.

And every time we talk about this disease, share a story or educate another person, we help bring mucosal melanoma from hidden to heard. 💜

To our warriors, survivors, carers and families:
What is ONE thing you wish people understood about mucosal melanoma?

Add yours below. 👇

Mucosal Melanoma Australia
From Hidden to Heard
Because rare should never mean overlooked.

11/08/2026

💜 WARRIOR WEDNESDAY 💜

Today’s Warrior Wednesday is a little different. It’s a few handwritten words born from a moment of frustration, reflection and the complicated emotions that can come with living with mucosal melanoma.

This poem was written by one of our beautiful warriors Anna, in 2022, not long after her diagnosis, at a time when the outlook felt frightening and treatment options were even more limited than they are today.

She recently rediscovered it. It was scribbled on a scrap of paper, and generously offered to share it with us because she felt other warriors may relate.

There can be an enormous pressure when living with cancer to “count your blessings” and stay strong, whilst underneath, there may also be fear, sadness, anger and uncertainty.
Gratitude and grief can exist side by side.

And although there is still so much more progress needed for mucosal melanoma, it is heartening to know that since these words were written, research has continued and new treatment possibilities are emerging.

Thank you Anna, for sharing such a personal little piece of your journey with our community. 💜

Note to self: Count your blessings

Count your blessings,
count your blessings, all day long,
Just keep counting, count your blessings
Count your blessings to stay strong.

You have food in your belly,
And a roof over your head
So please, now, stop complaining
You haven’t seen nothing yet.

So, get your act together now, stop the crying,
If you watch the news, you’ll see
It is not you, the one that’s dying.

02/08/2026

As someone living with mucosal melanoma, I know just how difficult it is to face a rare, aggressive cancer that has so few treatment options, particularly once it progresses. That’s why every piece of promising research means so much to our mucosal melanoma community.

This article looks at OBX-115, a next-generation engineered TIL (tumour-infiltrating lymphocyte) therapy that showed encouraging early results at ASCO 2026, including in a small number of people with mucosal melanoma. One of the most exciting aspects is that it has been designed to be less toxic and potentially easier for patients to tolerate than earlier TIL therapies, while still showing very promising results.

While this treatment is still in clinical trials and more research is needed, it’s a reminder that progress is being made. Every new discovery brings renewed hope that one day people diagnosed with this rare and aggressive cancer will have more effective treatment options and better outcomes.

I hope you’ll find this article as encouraging and hopeful as I did. 💜

OBX-115 engineered TIL therapy achieved a 67% response rate in melanoma patients who failed immunotherapy — with no IL-2 and outpatient-friendly dosing.

28/07/2026

💜 Warrior Wednesday 💜
~ The gift of connection ~

One of the greatest comforts after a rare cancer diagnosis is discovering that you’re no longer walking the path alone.

This week’s Warrior Wednesday features my dear friend Judi, who is living with sinonasal mucosal melanoma.

When Judi was diagnosed, she made the brave decision to reach out and connect with others living with mucosal melanoma. In doing so, she found far more than information and support, she found friendship, understanding and a community that has become an important part of her life.

In this heartfelt video, Judi shares why those connections have meant so much to her, and how, despite the challenges of this disease, the relationships she has built along the way have become an unexpected gift.

Her story is a beautiful reminder that while mucosal melanoma can feel incredibly isolating, none of us has to face it alone.

Thank you, Judi, for sharing your heart with us and for reminding us of the power of connection. 💜

Please take a few minutes to watch Judi’s story. I hope it resonates with many of you and, if you’re living with mucosal melanoma and haven’t yet reached out, I hope it gives you the confidence to connect with us here. You never know, the friendships and support you find may become one of the unexpected gifts of this journey. 💜