Chapters of Me

There is nothing in life, or the science of it, that isn’t vulnerable to being toppled from its precarious pedestal of certainty, not even cancer or the statistics that prop it up. — Stephen A. Gamble Holmes

Claire and I naively walking head-on into an obstacle called cancer

The Cost of Comfort

Whoever cannot see the unforeseen sees nothing, for the known way is an impasse. Before we reach that impasse, we must look beyond it. We must look beyond the convention that guards it. If we do not, we see nothing, and the possibilities they conceal remain unseen.

What we seek begins where comfort ends and discomfort begins. Every breakthrough I have made has come from this truth.

With cholangiocarcinoma, this is not philosophy. It is absolute necessity.
We must act on instinct, trust in critical thinking and look beyond convention.
~ Stephen A. Gamble Holmes

Battles Happen

My battle ran through operating theatres and intensive care rooms.

Twenty-five hours over three surgeries.
Multiple organs removed.
A ruptured aneurysm of the main hepatic artery that almost ended my life with seconds to spare.
Then twenty-two months inside experimental clinical trials.

What I learned is simple:
Lived experience and survival teach faster than science can publish.

Hail Mary passes are like lotto tickets, you have to be in to win and that is much more scary that it sounds in these few words.

As a late-stage IV survivor, I carry the clarity of lived expertise to the frontline where patients fight for their lives now, in ever increasing numbers, and into the boardrooms that we hope will support them.

A Last-Minute Hail Mary Pass

A newly approved clinical trial.
No previous success in the aggressive GI cancers of cholangiocarcinoma or pancreatic cancers.

A one-percent theoretical chance of survival.

I feebly said yes. I had no other choice.

Three days after the first infusion, my biology shifted. The pain dissolved.
I could sit, stand, and breathe normally.

Late-stage to fully NED within weeks.
One of the fastest and most improbable recoveries ever recorded in this disease or any cancer.

Below is a raw record of what occurred, broken into chapters of me. 

Chapters of Me

Real and Raw entries from my original diary.

A friend once said to me: His name – Kev. A very generous ear. “Steve, write your journey. Write every thought out of your mind. See it for what it is. See yourself.” If you do not you will not see, you will have nothing to stick around for, nothing to remember.

So I began.

What I found surprised me.
Writing everything out cleared my head.
It lessened the burden.
It opened my eyes to new possibilities.

It gave me purpose.
It gave me a life worth living.
Because once the truth is on the page, there is no room left for losing.

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.

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.

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

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 Pass My Last Chance

  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

As written in my diary:
Written in the dark of pain and fear – looking back this was when I shifted from patient passenger to fighter pilot.

My Message to Cholangio
It all happened in the briefest of moments.
“You busted through my front door in the dark of night, you wrestled me to the ground, repeatedly raping me to within seconds of my last breath.
‘Cholangio,’ you left me for dead, cold and beaten, but I did not die. I still breathe.

Cholangio, you took so much from me, yet you left something behind.
As I struggled for survival I found something deep within me that you could not see nor reach, my Unconditional Willingness, still intact, protected within my centre.
You and your cancer army could not reach what you could not see.

Cholangio, you pushed me to my edge but I did not go over.
As I clung there with just a finger-hold left on life, my mind unexpectedly calmed.
From my edge I could see more than I had ever seen before.

Your intentions were clear and brutal, as you skillfully culled me from the herd, but unwittingly you reactivated my instincts and freed my inner vision trapped deep within. I could see again.
My Looking Glass had returned; I could see beyond your grip.

Cholangio, I conceded to your unwanted hold, and as you rejoiced in your victory, you loosened your grip for just a moment.
But a moment was all I needed.
I re-engaged and slipped your grip and the awaiting noose.

Cholangio, I took that next step at speed, without hesitation or condition.
I continue to move forward with my Willingness and Looking Glass in hand.
I am not limited or daunted by the convenience of proof.
Yes, I have learned that proof is born from within the Looking Glass.
I know the dangers of an idle and convenient proof that can so easily disarm the pursuit of perfection.

Cholangio, I am aware of your stealth, your shadow, and your grip.
I know you, and you know me.
I know your path; you know mine.
I will always see your path, so that our paths remain parallel.

That night changed everything. From that edge, I learned to see differently, to respond, not recoil.

I’m a rare survivor of late-stage cholangiocarcinoma — an aggressive liver cancer of the bile ducts.

80 to 85% of diagnoses are non-resectable. For the 20% who qualify 85% recur.

This is a cancer without a robust survival model.

Five-year survival rate: 5 – 10%. (Pancreatic 12%)

If stage 4 metastatic, 2%. Most cases progress to metastatic

This wasn’t near-death. I went over the edge — and had to claw my way back.
Statistically, I shouldn’t be here.

— 25 hours of life-threatening surgeries, removing multiple organs
— A burst aneurysm — minutes, if not seconds, from death
— Two experimental clinical trials — one, a last-minute Hail Mary with just weeks — if not days — to live

I’ve walked alongside — and negotiated with — the deadliest of all cancer beasts: cholangiocarcinoma.
I forged a path between the improbable and the impossible — shaped by the breakthroughs of 2018 Nobel Laureates James Allison and Tasuku Honjo —
to achieve what may be the fastest complete response ever recorded from such a late-stage setting.

Please forgive my rookie video and presenter skills — it’s real and raw, but I guess that’s the point.

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

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

Thoughts Are Things – Real Things

If survival is our thought, that is our path.
Then our thinking are the stepping stones along it.
If not, all we see is the obstacle of cancer — not the opportunity it conceals.
That is the truth of any challenge.
— Steve Holmes


I have learned:
Regular people bring commonsense and clarity to the complexities of cancer.
Give them the right tools, the right pathway, and the opportunity —
and they don’t just survive — they redefine what’s possible.

That’s what’s been missing.
That’s the backbone of How We Win.*
— Steve Holmes


Need. Hope. Will.

When every known way is an impasse, Need triggers Hope.

Need unleashes our unbreakable inner will — it refuses to lie down.
Hope, our tireless mapmaker, charts the path from improbable to possible.
Perseverance fuels the journey.
Will drives it home.


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.

“You are going to die” — that’s an opinion, not a fact.

That clarity creates control.
Control builds response.
Response builds survival.

Steve Holmes


I hope some of these will help you in your battle.
Remember this:

We gather strength as we go —
with each step, not in spite of cancer,
but because of it.

What My Survival Taught Me — and What Now Drives Everything I Build

My Three Core Principles

1. Simplicity reveals truth.
Complexity camouflages failure. Strip it away — failure is exposed. The solution is revealed.
That clarity attracts.

2. The future is not built on today’s facts.
It is built on today’s vision, invention, and the relentless urgency to deliver — now.

3. End-to-end control.
Excellence owns the whole system.
Remarkable is giving life to what is on your mind.
Concept, vision, failures, triumphs — and reality — all aligned.

My Guardrails
Law 1 — Delay is death.
Between conception and creation falls the shadow. Every delay feeds death.

Law 2 — Dogma constrains potential.
We are beaten by what we think we know — we win by breaking through it.

My Execution Truths
Rule 1 — Awareness is theatre.
Survival is the execution of what works — now.
Advocacy of what works is useful. If not, it is in the way.

Rule 2 — Future cancer success.
It lies in prevention, the innovation of lived expertise, patient empowerment, expanding surgical options — and narrowing the gap between them.

The Foundation’s Core Principles
were born of these.

What I Understand
Cancer is a function of biology.
Lifestyle shapes biology.
That clarity shines a light on what needs to be done.

I did not choose this.
Cholangio chose me.

It hunted me and my family.
Now I hunt it.

This is my something special.

Why cycling?
Cancer took it from me. So I took it back.

In the beginning, it existed only in my mind.
As I lay in ICU beds, and later on the couch between treatments, unable to move, I indulged in dreaming of cycling again. I could see myself riding up those steep inclines, back in the group, feeling the effort, the burn, the fatigue of cycling. The pain of living life made me feel alive.

My mind was soaked in that feeling.
I could see it and I could feel it: the strain in my legs, the rhythm of breathing, the simple truth of being alive. It kept me whole, mentally.

It was as if my mind was leading me back there, keeping me connected to what was still possible.

Cycling became my expression, my outlet, my talking point.

Later, my dreams met their reality. I returned to the bike, tentative at first but real. Cycling became my expression once more, physically and mentally aligned with the opportunity that life afforded me.

It was also an opportunity to honour the effort of others.
My oncologist Matt, also a cycling tragic, had kept his promise. He got me back on my bike.

Cycling is where I filter my thoughts, empty them out, and find the gold that lies among them.
It is where my thoughts find perspective and a pathway forward.
Where obstacles can be broken down to reveal the possibilities they hide.
It is a space that feeds dreams without condition and where fiction is free to play and meet its reality.

It is where How We Win, the Cancer Doctrines, BILEology™ Genesis and the MADEK™ plus Choline Cascade were conceived.
All were built in my mind and refined across 14,000 kilometres on the road.

Cycling, like life, demands discipline, vision, perseverance and innovation.
It grounds my effort.
It keeps me connected to the opportunity of life.

In the early days, it was a mental escape into a parallel world, far from ICU alarms and the nearness of death.

Later, it became a place of vision and construction, a moving workshop where everything I had learned could evolve into something greater.

Now it is a force.
My force.

 

Steve Holmes cholangiocarcinoma survivor

Claire, Georgia, Zach, and I
This family is still standing because open-minded people acted. That was all it took to set this unlikely survival in motion.

Steve, there are many we help a little and some we help a lot, and then there is you. Go out there and ride your bike and do something special with the opportunity you have just been given. See you in three weeks.
Dr Matthew Burge

I hope this page honours that opportunity and shines a light on what is possible for you.