From the hunted to the hunters

Left: Me and Graeme.  Left Centre: Graeme at Golf (RIP 2014)
Centre Right: My pictorial journey from person to patient and back to person again.
Far Right: Claire and I Salt Lake City Returning from the Cholangiocarcinoma Conference 2024

My younger brother Graeme and I were diagnosed with the same aggressive, terminal cancer.
Six months to live.

I survived. Graeme did not.
This is a cholangiocarcinoma survivor story told through the contrast of two identical diagnoses and two very different outcomes.

That contrast defined everything that followed.
It exposed something medicine rarely sees. The difference between life and death is not biology alone. It is the response wrapped around it.

The First Helplessness
When Graeme was diagnosed, none of us knew what cholangiocarcinoma was.
Neither did his doctors; they had to search for it.

There was no roadmap.
No coordination.
No lived-experience network.
No system preparing him or us for what was happening.

He did everything asked of him, but the system wasn’t built for this cancer.

And I stood there, helpless.
Helplessness leaves a scar that never fades.

Graeme died at 52.
A wife without a husband.
Two children without their father.

His death changed his family, it changed our family, and it changed me.

Then It Came for Me
Not long after, I was diagnosed with the same cancer, but it was more aggressive, and time was most definitely not on my side.

Extrahepatic distal cholangiocarcinoma.
Located at the head of the pancreas, a very similar location to my brother’s.
One of the deadliest tumor positions of one of the deadliest cancers.

My decline was fast.

Twenty-five hours of multi-organ removals over three surgeries.
A catastrophic arterial rupture one month later, minutes from death.
Then the cancer returned everywhere: liver, lungs, too many tumours to count.

Late stage.
Stage four.
Weeks, maybe days, to live.

Now I stood where Graeme had stood.
The same cancer that hunted him was hunting me.

What changed was everything that surrounded the biology.
An open-minded oncologist.
A wife who had mapped out every detail.
And teamwork with willingness and decision-making that was about to outpace this beast of a cancer.

The Pivot: From Passenger to Pilot
Too weak to hold a pen, I signed the KEYNOTE-158 clinical trial consent with Claire holding my arm to the desk and my oncologist Matt placing the pen in my hand.

Three days after the first infusion, the pain disappeared.
I could sit up, in fact asked Claire if I could go for a walk outside in the sunshine.
An amazing feeling where words do not give it credit.
Weeks later, my first scan, I was NED, no evidence of disease.

A full and complete response from a setting with no documented survival at the time.

Surviving terminal stage four cholangiocarcinoma is rare.
Surviving it after operational recurrence is almost unheard of.

That survival wasn’t luck.
It revealed something real.

Patients can shift biology when the right conditions of response exist.

The Responsibility That Followed
I couldn’t walk away.

Graeme didn’t survive.
I had.

That contrast created a responsibility.
To do something meaningful with the opportunity survival handed me.
To ensure that what happened to him doesn’t happen to others.
To dismantle the helplessness that cost him his life.

Cancer patients suffer deeply. That’s what it is to be a patient.
I had just walked the talk of the greatest scientific minds alive today and achieved one of the fastest complete responses ever documented.

That cancer, Cholangio the Beast, brought me within a whisker of my last breath.
Yet it could not take what it could not see.

So anything I can do to reduce that suffering, to make life more liveable, is a good thing, a meaningful thing.
Sharing my battle-earned knowledge does exactly that.

My result shines a light on what’s possible.

That is where my walk with cholangio began, where I shifted from patient passenger to fighter pilot.
And why I will never stop.

My survival showed what’s possible.
Graeme’s loss showed what’s at stake.

Together, those two truths shaped the system I now build.

From Hunted to Hunters
Cancer hunted our family.
It took Graeme.
It came after me.

But the pattern ended with me.

This is the shift.

When patients are empowered to respond, not just receive care, we stop being hunted.
We start hunting back.

That is how we outpace the disease.
We change the odds.
We move from victims of biology to active participants in restoring and controlling our own physiology and survival.

Two brothers.
One lost.
One lived.

This is the story that turned helplessness into strategy.
Loss into responsibility.
Survival into purpose.

This is where the mission began.
With Claire, we knew what needed to be done,
and that begins with a community of patients, a culture that is a survival system in itself .

Steve