Steve shares his knowledge, experience, and wisdom to help better equip and empower your capacity to mount a robust and effective response to a serious challenge.

steveHOLMES

My brother and I were diagnosed with the same aggressive terminal cancer, with 6 months to live

I survived. Graeme did not.

My survival became part of a modern-day medical breakthrough — revealing a new pathway for how patients can respond to, and survive, even from the most serious of late-stage settings.

Surviving stage IV terminal cancer is remarkable in itself. It attracts attention — and with it, an unexpected responsibility.

Cancer patients suffer a lot.
That’s what it is to be a patient.
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.
It shines a light on what’s possible.

my walk with CHOLANGIO

Diagnosed with distal extrahepatic cholangiocarcinoma —the worst of CCA and GI survival rates generally.
25 hours of multi-organ surgery, including a near-fatal post op hepatic artery aneurysm, at home with just minutes to spare.

But the cancer returned — fast, aggressive, widespread metastases across my liver and lungs. Too many to count.

Now late-stage, stage IV, with weeks — if not days — to live…

A LAST-MINUTE HAIL MARY PASS — in the form of a clinical trial: KEYNOTE-158.

It took just 3 days for all the pain to disappear.
And my first scan confirmed I was cancer-free.

I had just walked the talk of the greatest minds alive today — and possibly achieved the fastest documented complete responses ever recorded in cancer.

This Cancer that nearly took me in the dead of night.
It shaped me, it shaped my path.

steveHOLMES

My brother and I were diagnosed with the same aggressive terminal cancer, with 6 months to live

I survived. Graeme did not.

My survival became part of a modern-day medical breakthrough — revealing a new pathway for how patients can respond to, and survive, even from the most serious of late-stage settings.

Surviving stage IV terminal cancer is remarkable in itself. It attracts attention — and with it, an unexpected responsibility.

Cancer patients suffer a lot.
That’s what it is to be a patient.
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.
It shines a light on what’s possible.

my walk with CHOLANGIO

Diagnosed with distal extrahepatic cholangiocarcinoma —the worst of GI survival rates
25 hours of multi-organ surgery, including a near-fatal post op hepatic artery aneurysm, at home with just minutes to spare.

But the cancer returned — fast, aggressive, widespread metastases across my liver and lungs. Too many to count.

Now late-stage, stage IV, with weeks — if not days — to live…

A LAST-MINUTE HAIL MARY PASS — in the form of a clinical trial: KEYNOTE-158.

It took just 3 days for all pain to disappear.
And my first scan confirmed I was cancer-free.

I had just walked the talk of the greatest minds alive today — and possibly achieved one of the fastest documented complete responses ever recorded in cancer.

This Cancer that nearly took me in the dead of night.
It shaped me, it shaped my path.

My Path Forward

What I Do

  • I innovate and engineer systems to stop cancer — now.
  • Lived experience is what works. I convert it into survival systems that deliver — today.
  • You can’t advocate for victory — victory speaks for itself.

How We Win

To speak of change is commonplace.
To offer a solution is not enough.
To build it — and live inside it — that is how we win.

Claire aand I built a Patient-Led Response Culture —
a survival system in itself,
a force that innovates and executes — not advocates.

We created pathways for lived experience and patient expertise
to directly shape frontline survival outcomes.

We introduced accountability as our core measure:
We win by being accountable to today’s patient survival — today.

We engineer systems that deliver survival — not someday, but now.

We choose innovation and execution over ideology.
We choose action over appearance.

That’s how we win — not in theory, but in real time, every day.

Our Mandate 

Everything must answer to this test:

“Does what we do — right now — benefit today’s patient, today?”

We didn’t survive to share an inspirational story.

We survived to live the opportunity life gives anyone willing to act.

Survival became a responsibility — to build something from it.

A patient-led culture that operates as a system that executes — not advocates. An infrastructure for patients to find their way to survival.

Our story had to become a system for survival.

Something others can build on.

That’s the opportunity we were given. That’s the real story — execution over advocacy.

Who I Am

I’m a rare survivor of late-stage cholangiocarcinoma (Bile Duct Cancer) — a cancer with a 3–5% survival rate. Mine was late-stage. The survival rate for that: 0%.

My rite of passage:

  • 25 hours of life-threatening, multi-organ removal surgery
  • A near-fatal aneurysm — minutes if not seconds from death
  • Two experimental clinical trials — one, a last-minute Hail Mary
  • I have walked the talk of the world’s greatest scientific minds — achieving one of the fastest documented complete responses ever recorded from such a late-stage cancer setting.

Why do I cycle?

Cancer took it from me. I took it back.
It’s where I think. Where I cut through the noise.
It’s where I filter the truth — and forge the breakthroughs.
It’s where “How We Win” is built.

Cycling, like life, demands persistence and perseverance.
It grounds my effort and connects me to the opportunity — life.

In the early days, it was an escape —
from ICU beds, from thoughts of dying.
Later, it became a space of vision —
a transformative workshop on wheels,
where everything I had learned could evolve into something greater.

More on what I do:

www.cholangio.org/howwewin

Chapters Of Me

The Story That Built A System

The First Collapse

When I was 29, my brother Graeme and I were at cricket practice. Dad, our coach, was tossing balls back to the bowlers. Then, without warning, he collapsed from a heart attack. He was 52.

Neither Graeme nor I knew CPR. I stood there, helpless, as he died at our feet.

I’d had chances to learn. I didn’t take them. It would’ve been simple. Fast. But I didn’t prepare—and when it counted, I failed.

That guilt has never left me. It then proceeded to shape everything that followed.

How could it not, if Dad’s life was to mean anything?

The Second Blow

Years later, Graeme—now 52—called with news: he had terminal cholangiocarcinoma. We’d never heard of it. Neither had his doctors. They had to Google it.

Graeme trusted the system — but it wasn’t built for this cancer. They didn’t give up out of malice. They gave up because they didn’t know how to respond.

There was no lived-experience network. No strategy. No support. He was left isolated—managed, but alone. He never had a chance.

I was back on the sidelines. Again, helpless. Again, nothing I could do.

Graeme died, leaving behind a wife and two children. Their lives were changed forever.

Later that year, I broke my neck in a cycling accident. I was paralysed down my right side for nearly a year.

Where My Helplessness Ended

Then, after recovering and regaining my full functions, I was diagnosed with the same cancer — but at a more aggressive version.

But then I was diagnosed with the same cancer—but at a more aggressive version.

My decline was fast. The odds: less than 1%. Statistically, no one survived from where I stood. But amazingly I did.

Mum wanted me to walk away. “Take the miracle and move on,” she said.

But I couldn’t. I had kids too. And Graeme didn’t get to walk away.

My survival couldn’t just be mine. It had to mean something more.

That helplessness I’d lived with for years—I wasn’t going to let it lead anymore.

The Lessons Hidden in the Hurt

“There is nothing in life—or the science of life—that is not vulnerable to being knocked off its precarious pedestal of certainty. Including cancer an the statistics that prop its reputation up. The only certainty is that there is no certainty—only obstacles and the possibilities they conceal within them.” 

Cancer is one such obstacle.
A diagnosis is not the end—it is a position, not a fate.

As Alfred D. Souza reflected:

“For a long time, it had seemed to me that life was about to begin—real life. But there was always some obstacle in the way… At last, it dawned on me that these obstacles were my life.”

Therefore, our opportunity begins when we pause to see cancer as it truly is—not as we fear it to be.

That is how we begin to break down its reputational grip over our mind.

Only then do we begin to see the hidden possibilities—they are our opportunities, our new way forward. That is when we are ready to respond.

And so, our real opportunity within life is to see those possibilities —
and then set about making them our reality.

When I was told I would die—that was their reality, not mine. I still had a choice. And with that choice came hope—along with possibilities only someone in my position could see.

If I had accepted the prognosis and given up, then yes—I would have died within a few short months. The statistics would have been right. But I didn’t.

I chose differently. I chose hope—not the vague kind, but the kind born of urgent need and a refusal to surrender. That hope revealed a path—one no one else could see.

It didn’t just lead to survival. It gave me back my life—clearer, fuller, and more meaningful than I’d ever understood before.

People often say to me, “Steve, you’re so passionate. How do you do this?”

My answer is always the same:
You’re mistaking perseverance for passion.
And it’s not how I do this—it’s why I must.

Passion is a luxury — born of time and choice.
Two things cholangio patients rarely have.
And passion fades.
Perseverance doesn’t.
It’s born of necessity — and endures because it has to.

There’s a quote I returned to often. It kept me from falling through the floor—and dying where I lay:

“Because a thing seems difficult, do not think it impossible.”
— Marcus Aurelius

And in time, I made it my own:

“There is always a way—if we remain open to such thinking.”
— Steve Holmes

Breaking Cholangio Apart, Stripping its Reputation and exposing its real weaknesses.

The Mission Began

Cancer wasn’t going away. More people were being diagnosed, and nothing was slowing its death rate.

The system wasn’t broken.

It was built for care — not for survival.

Cholangiocarcinoma’s 3–5% survival rate exposed the truth:

Treatment does not work for this type of cancer. Period.

Outside of aggressive surgery, treatment alone won’t beat it.

A care-based approach is passive — and this cancer punishes passivity and wins on indecisiveness.

What was missing was a response system — and a culture to support it.

Proactive. Strategic. Urgent.

A culture built on lived experience.

A culture that wants to win — despite the statistics.

But with so few surviving, who could lead?

I had just walked the talk of the greatest minds in science alive today.

I walked their theory — and survived.

I had clarity. I had proof.

If not me — then who?

Breaking Cholangio Apart

I used my lived experience and hard-won insights to break cholangiocarcinoma apart — searching for weaknesses to exploit.

Two things became immediately clear:

Cancer doesn’t just attack biologically.

It attacks psychologically.

Cholangio feeds on chaos — both cellular and cognitive.

Confusion empowers it. Fear and paralysis sustain it.
Its reputation does damage before the disease even arrives.

Society softens how we talk about cancer.

That softening weakens us.

People collapse before their biology does.
My goal was clear:

Strip cholangio of its reputation.

Expose its underside — its weaknesses, our opportunities.

Then build survival systems that exploit them.

But that would take more than strategy.

It required a shift in perception.

A new angle of attack.

To beat this cancer, we have to fight on two fronts:

Psychologically, we must strip it of reputation — to break the paralysis and empower response.
Biologically, we need better tools — and more aggressive use of the one that works: surgery.

The more scope we have to operate, the more options we gain from diagnosis.
The real answer?

Outpace it.

And that starts with decision-fitness — the mindset, readiness, and will to respond with clarity when it matters most.

That’s why I built a patient-led response culture — grounded in lived experience, and committed to action.

Symptoms

While cycling I suffered a sudden loss of energy, much like the onset of a bad flu. The next day these following symptoms became obvious:

  • Increasing lethargy
  • Yellowing eyes
  • Itching and yellowing hands
  • Pale-clay-colored stools and dark urine
Cancer Diagnosis Details
Surgeries ( total:25 hours)

Whipple Multi-Organ Removal

Surgical Complications
Clinical Trials
Attica:

Attica trial is trialing an adjuvant therapy.

  • 6-month Chemo, weekly infusions (12 hr days) not well tolerated
  •  2 year follow up
  • At 5.5 months, I experienced a prolific metastatic breakout
  • Mets Description: Large multiple tumors under my right rib cage, across the top of my liver, and both lungs – (too many to count.) Breathing became labored with every breath, and sitting became increasingly difficult.
  • Now – late-stage, Stage 4 Prognosis: weeks to days without further intervention
Keynote 158 (Aug 2017): Monoclonal Immunotherapy
Hail-Mary PassPass of Last Resort

  1. 3 weekly infusions
  2. Response – Day 3
  3. Cytokine Release Syndrome– CRS Level > 3+: Day 4 to Day 12
  4. Complete & Full & Response – officiated at 9 Week Scan
  5. Reference: NED – Remission – Cure
Biomarkers

From healthy cyclist to terminal cancer patient with weeks to live—then back to cycling 400 km a week—and building a patient-led response system for cancer. This is how it happened.

Late October 2016 – The First Sign
I was on a Saturday coffee ride between Main Beach and Burleigh on the Gold Coast when a sudden wave of weakness hit—like a bad flu. I pulled out and went straight home.
I had no idea it would mark the start of a battle for my life.

November 2016 – Diagnosis
Tests revealed elevated liver enzymes. A scan showed lesions blocking bile flow.
Then came the diagnosis: cholangiocarcinoma. Six months to live.
It was the same cancer that had taken my brother Graeme two years earlier.

December 8, 2016 – Whipple Surgery
A 14-hour, multi-organ surgery by seven surgeons. They removed:

  • Common hepatic duct (lower section)
  • Common bile duct
  • Gallbladder
  • 80% of my stomach
  • Head of pancreas
  • Ampulla of Vater
  • Sphincter of Oddi
  • Duodenum (first chamber of the small intestine)
  • 2 lymph nodes

January 5, 2017 – Aneurysm
An emergency aneurysm ruptured in my main hepatic artery. I was minutes from death.
Dr Tom Snow, who was about to leave the hospital, returned just in time to save my life.

July 2017 – Aggressive Recurrence
The cancer returned. This time, it was everywhere:

Large tumours across my liver
Lungs—too many to count
Breathing became difficult. Sitting was painful.
I was now stage 4, with weeks—possibly days—to live.

The Hail Mary Pass
Dr Matthew Burge offered a phase 2 clinical trial. This phase 2 drug had no record of success in cholangiocarcinoma or pancreatic cancer. It was a long shot.

Too weak to sign the consent form, Claire held my arm up while Matt guided the pen. Then Matt looked me in the eye and said,
“Steve, you have one job—stay alive for the next 30 days.”

This new drug concept helps our immune system to see and eliminate the cancer, developed by Professors James Allison and Tasuku Honjo, which would later win them a Nobel Prize in 2018.

August 8, 2017 – First Infusion
I made it.

August 11, 2017 – Day 3
The pain disappeared. I could breathe again. Sit. Walk.

October 2017 – A Historic Scan
Nine weeks later, I was completely NED—No Evidence of Disease.
I became the first cholangiocarcinoma patient to reverse stage 4 cancer at such a late stage, and be confirmed in full response.

A New Path, A New Responsibility
That survival wasn’t random. It revealed something.

I had walked the talk and lived the hypotheses of the greatest minds in cancer science—and proved them right. That gave me a new responsibility: to build from it.

I began to develop a patient-led response to cancer—rooted in lived experience, grounded in science, and focused on execution. Not hope alone.
This response culture is designed to empower patients, amplify engagement, and drive survival outcomes forward.

Video: Part One of Two

Reclaiming the Ride: Cycling 14,000 km’s

Having reclaimed my cycling, I knew I carried both a responsibility and a challenge.

My oncologist, Matt — ever confident, and a pretty handy cyclist himself — once said to me:

“Don’t worry Steve, I’ll get you back on the bike.”
Lofty words, considering no one else had beaten Cholangio the Beast from such a late-stage position.
But he believed it.
And because he believed it, so did I.

Cycling seemed to feature a lot in my battle to beat cholangio.
Maybe it was just an interesting distraction.
Maybe it was a symbol of the fight.
But this wasn’t the first time cycling had shaped a major decision.

Transforming Hope To Reality

Hope is real. It is the vision and plan born of our need — a map toward where we must go. Legacy is what we did with that hope, what we left behind — for those who follow.

I rode for those who could not. For those who follow. To raise funds for the Patient Navigator Journals—a life-defining response strategy every patient should receive the moment they’re diagnosed.

Lynette’s Passionate Plea Fuels Perseverance

“I cannot speak highly enough of the Patient Navigator Journal. I owe so much to the Cholangiocarcinoma Foundation Australia. The information and support I received were life-changing. When I experienced a recurrence, I knew exactly what steps to take because of the tools and knowledge Steve provided. Please support Cholangiocarcinoma Foundation Australia’s patient initiatives—I certainly do!”
— Lynette Williams, Patient Survivor

Show ME Don’t Tell Me.

Why Advocacy Failed Me — and Response Won

People often say to me:
“Steve, I don’t know how you do all this. You’re so passionate.”

My answer?
“It’s not how. It’s why I have to.
And you’re mistaking passion for perseverance.”

Passion is a luxury — born of time and choice.
Something cholangio patients don’t have.

Perseverance is different.
It’s not a feeling.
It’s a decision — sharpened by urgency, sustained by necessity.

Cancer is relentless.
I had to be just as relentless — until it was no more.

You don’t know how you’ll function until you’re forced to.
It’s a crash course in discovering who you really are.

What I learned surprised me.

There was a bold deliberation I didn’t know I had —
even as the emotional storm tried to take me down.
My creative persistence — once annoying to others — became an edge.
It kept drawing up paths where none existed.

And beneath it all, I had a quiet endurance —
an unshakable willingness that needed no validation.

Execution Over Optics.

Because I nearly drowned in a sea of care —
where it’s all care, and no responsibility.
Care that’s passive. Palatable.
That rewards compliance and punishes initiative.

It wasn’t response.
It wasn’t proactive.
And it wasn’t what Graeme needed — or what I needed.

That’s when I saw it:
Advocacy and awareness are just optics —
substitutes for the action patients need.

Optics — not execution — is the default operating system.
And for a while, I was just a deer in its headlights.

But the version of me that emerged from that fog?
He knew one thing with certainty:
It was up to me.
And that, I had full control over.

So I built what was missing.

Those harsh lessons didn’t just help me survive.
They shaped how I lead.
They shaped how I execute.
They revealed how to increase survival — in ways no traditional advocacy ever could.

Because at the edge of the cliff, you don’t need a story.
You need a system that holds.

Execution cuts to the bottom line.
Today’s patients need action.

Anything else is theatre.
Anything else just gets in the way.

Theatre Doesn’t Save Lives. Execution Does.

Am I an advocate? NO 

Advocacy talks about tomorrow’s cure.
Its survival depends on that.

I deliver what works — today.
Because patients on the battlefield — their survival depends on that now.

RealityCheck

We are all healthy — until we’re suddenly not.

And cancer almost always arrives as a surprise.

It doesn’t care if you’re fit, strong, educated, or ready.
It arrives — uninvited, unannounced, and life-defining.

You can’t positive-think your way out of cancer.
But you can rebuild your way through it step by step.

When it hits, only one thing matters: how you respond.
Your response defines your outcome.
Own it. Fully. Don’t outsource that. Don’t delay it.

That’s the line between drowning in uncertainty
and building a system that holds.

I thought I was too healthy to get cancer. I wasn’t.
And I’ve since learned — that’s how we all think.

You can’t control that you have cancer.
But how you respond? That’s 100% in your control.

Change the Angle of Attack

To beat cancer, you must change how you see it.
Not as for its reputation. Not as a fate. But as a position — a problem to solve.

That shift dismantles its power.
It clears the way for you to respond — effectively, decisively.

Follow the Process.
The Process breaks cancer into winnable pieces.
Step by step. No overwhelm. No distraction.
You wear it down until it has nothing left.

That’s execution. That’s how we win.

Certainty Is A Mirage

In science — as in life — there is no certainty.
Only obstacles, and the possibilities they conceal.

Cancer is one of those obstacles.
But it’s not the end.
It’s a position — not a fate.

As Alfred D. Souza wrote:

“For a long time, it had seemed to me that life was about to begin — real life.
But there was always some obstacle in the way…
At last, it dawned on me that these obstacles were my life.”
That’s how you see cancer for what it is — not what you fear it is.
That’s when you break its grip.
That’s when the possibilities emerge.
And that’s when you act — turning them into reality.

The future of CANCER

Empower the patient — increase survival.
Empower their community — multiply it.

The empowered patient is the future.
They don’t survive care — they lead response.
They combine science, strategy, and will to outpace cancer in real time.

They don’t wait for breakthroughs.
They build them.
They don’t follow the science.
They push it forward.

That’s the future we’re building.
That’s not a vision. It’s a build plan.

~ Steve Holmes

Channel 7 News interviews Ben (fellow patient RIP) and myself
about a new clinical trial using a virus to target and destroy cancer.

It is our Choice

When you believe in cancer’s reputation more than you believe in your ability to respond and overcome it – which will triumph?

I Have Cancer I Am Going to Die

As Shakespeare wrote, “Nothing is either good or bad, but thinking makes it so.”

“I have cancer” is a fact.
“I’m going to die” — that’s an opinion, not a fact.
Clarity creates control.
Control builds response.
Response builds survival.

~ Steve Holmes

My Challenge

Separating the lessons learned from the emotions that encapsulated them has been a significant challenge. Initially, I sought to detach them for clearer communication. Yet, I realized that these emotions are not just carriers, but integral components of the lessons themselves. My challenge now lies in sharing these intertwined experiences in a way that offers tangible benefits

ContactME

For more information please contact me
Warm Regards Steve

BACK TO TOP