Introduction
by Steve Holmes

Steven West cholangiocarcinoma survivor is not a title he expected to carry nearly eleven years ago when he was unsure he would reach retirement age.

That is where this story begins.

Not with recognition.
Not with board roles.
With uncertainty.

Many of you know what it feels like when a diagnosis collapses the horizon. Plans narrow. Time feels conditional. The future becomes something you are not sure you will see.

The video above captures Steven reflecting on that period and what followed.

What you will read below is his story in his own voice, shaped only enough to make the sequence visible.

Nearly eleven years ago, I wasn’t sure I’d ever get to retirement age.

When you hear cholangiocarcinoma, everything changes. It changes for you and it changes for your family. This is the worst thing a family could go through.

You start thinking differently. You measure time differently. You look at milestones and wonder if you will reach them.

I did not know if I would.

What changed for me was not just treatment. It was engagement.

As a Steven West cholangiocarcinoma survivor, his message to newly diagnosed patients is direct: get genomic testing early.

I became involved with the Cholangiocarcinoma Foundation. There is a program called Cholangio Connect (Cholangio-Mentors in Australia) that helps people who are newly diagnosed connect with others who have already been diagnosed.

It is an incredible experience to help somebody stay alive.

When you are newly diagnosed, you feel isolated. The language is clinical. The literature can feel distant. If we can write things in a way that is directed at the patient and does not sound so clinical, people can understand what they can get from it.

Understanding matters.

If you are newly diagnosed, get genomic testing. Genes are the future. It is what you need to know now, even if you do not need it now.

You may not use that information immediately. But you may need it later. And when you need it, you do not want to be starting from scratch.

The things that are being developed now save lives. They save families.

I was awarded the President’s Volunteer Award for service. I do not do it for medals. I do it because I want to help another family never have to deal with this again.

Today, there are things I look forward to. There are no firm plans. I focus on enjoying my life, enjoying my family, and helping other people along the way.

Back then, I did not know if I would reach retirement.

Now I am living it.

What This Makes Visible

Ground zero for Steven was uncertainty for his family and whether he would reach retirement.

The decision that changed direction was engagement instead of withdrawal.

The structural behaviours that mattered were connection, clear communication, and early genomic testing.

The rebuild phase turned survival into service.

Eight years on, he is still here.

He is living the milestone he once feared he would not see.

He is helping the next family navigate their own beginning.

Steven, we met in a place neither of us expected to be. We worked with what we had and moved forward from there.
We found the light and learned how to share it,

Thank you
Steve