Bold Deliberation and Persistent Creativity

When responding to a serious cancer diagnosis, we must move forward with bold deliberation and persistent creativity. We must be open-minded and act with unrestricted willingness, undeterred by the noise of other misguided opinions. This is how we generate the perseverance and endurance needed to flip cancer on its head and break its grip.

If the path is blocked, go around. If the fruit is bitter, spit it out. Sometimes, the longest way home is the quickest way home.

From healthy cyclist to terminal cancer patient with just days to live, then back to cycling 400kms per week, and pioneering a new patient-led era in cancer response.

It seemed to me that one moment I was a fit and healthy cyclist, then the next, I was battling a terminal cancer that had an unbeaten record. I like most people was blind if not blissfully ignorant to the fact that healthy people get cancer too.

October 2016: A Catalyst for Change

It was a routine sunny Saturday morning coffee ride along the glistening foreshore of the Gold Coast that became a turning point in my life and health. Suddenly, I experienced a weakness that felt like the onset of a bad flu, the type where your energy drains away but you have no head symptoms. It was severe enough for me to abandon the ride and head straight home to the couch. Little did I suspect that this would mark the beginning of a battle for my life.

November 2016: A Dire Diagnosis

Just a few days later, I was diagnosed with terminal cholangiocarcinoma, the same cancer that had claimed my younger brother just two years prior. My prognosis was just six months to live. What followed was 25 hours of life-threatening multi-organ removal surgeries to eliminate all the tumors. I had to sacrifice a shopping list of vital organs, including my bile duct, gallbladder, stomach, pancreas, and duodenum. Then, on January 5th, 2017, I survived an emergency aneurysm to my main hepatic artery, thanks to an amazing surgical save by Dr. Tom Snow with just seconds to spare. Without his intervention, I would not have survived to tell this tale.

August 2017: An Aggressive Return

By August 2017, the cancer had returned aggressively. With only weeks, if not days, left to live, my oncologist, Dr. Matthew Burge, threw me a highly speculative ‘Hail Mary Pass’ in the form of a phase 2 clinical trial that had no success record with cholangiocarcinoma or pancreatic cancer. This new concept in tackling cancer, developed by Professors James Allison and Tasuku Honjo, would later win them a Nobel Prize in 2018.

Too weak to sign the contract unassisted, Claire held my arm up while Matt guided the pen in my hand so I could sign the trial contract. Immediately after, Matt looked me straight in the eye and, with his best cycling voice, said, “Steve, you have one job to do—stay alive for the next 30 days.” That was how long I would have to wait to receive my first infusion.

August 8, 2017: The Hail Mary Pass is Thrown

I had survived long enough to receive my first infusion.

August 11, 2017: A Miraculous Turnaround

Miraculously, just three days later, I caught Matt’s pass and scored a touchdown: all my pain disappeared, and I could sit up, breathe freely, and walk normally.

October 2017: A Historic Milestone

Nine weeks later, scans confirmed I was completely NED (No Evidence of Disease), the first-ever cholangiocarcinoma patient to dynamically reverse a stage 4 cancer from such a late-stage setting. It was a special moment in anyone’s life. You can read more about that below.

A New Path and an Unexpected Responsibility

This whole experience set me on a new course, combining my pre-cancer life experience with the expertise gained in overcoming an unbeatable diagnosis. I had risen above what I thought I was capable of both physically and mentally. Driven to survive, I had forged a new pathway between the unlikely and the impossible. It was said to me, “Steve, you have walked and lived the hypotheses of the greatest minds in science today, something that few can claim.” This incredibly unique lived experience revealed an unexpected responsibility.

I had to boldly and creatively leverage my unique advantage and pioneer a new patient-led response to cancer. This response pathway—a mix of process and culture—ensured that today’s science would be fully understood and utilized to benefit today’s patient battling to survive. I aimed to bring science and healthcare around the empowered patient, thereby forging new shared pathways in how we approach and respond to cancer. This strategy increased effective engagement and capabilities at all levels, materially boosting five-year survival rates and beyond.

Cycling: Survival and Transformation

As it transpired, my passion for cycling carved out a path through decisions and connections that ultimately saved my life. Cycling became not only my distraction but also my connecting interest with many who had a hand in keeping me alive. It continues to influence how I live life, think, and act on those thoughts. Cycling has become an amazing introspective filtering and transformational space.

With Claire’s help, I had defied the impossible, flipping ‘Cholangio’ on its head and escaping its grip to record a historic medical milestone.

Because I Can – Cancer took it from me, but I have taken it back. Cycling like life requires the disciplines of ‘persistence’ and ‘perseverance’, it grounds my effort and keeps me connected to the opportunity—life.

ICU hospital beds sparked the initial motivation, cycling offered a parallel world to distract me from the thoughts of dying, and then later on it physically became my special place of introspection, vision, and a transformative workshop on wheels to expand on what I had learned.

Together with Claire, we co-founded the Cholangiocarcinoma Foundation Australia, a ‘patient-led’ registered charity with a deep understanding of how to respond to a cancer challenge that takes no prisoners. Claire serves as the Director of Operations, and I am the Managing Director and Chief Executive, overseeing the day-to-day functions.

The Foundation is recognized as Australia’s essential hub for knowledge, support, and education. We strategically benefit patients, their support networks, medical teams, industry, and scientific partners—all working toward improving patient survival. Collaborating closely with leading research scientists, medical professionals, healthcare providers, pharmaceutical companies, and medical institutions, we lead and drive change that directly impacts today’s patient survival. We identify research gaps, initiate research, and address unmet needs through patient-led innovations.

As devastating as the battle with such a high-lethality cancer was, it granted us critical insights—insights that could only be gained from deep within the belly of the beast. I survived, and with that survival came an understanding of possibilities and opportunities that most could not conceive. Cancer had loosened its grip and revealed its inner weaknesses—our opportunities—forming the foundation for something transformative. That’s how we created OPR, BILElink, and BILEflow: a suite of globally unique cancer and patient response strategies designed to empower patients to respond more effectively and succeed.

We Help Patients Help Themselves – can you also help us as well?

Empower the patient – Increase Survival. Empower their support community – Exponentially Increase Survival.

The empowered patient stands uniquely positioned to understand, engage, and ultimately succeed. They hold the power to influence and reshape both science and healthcare, leading to increased survivorship and reducing financial burdens on both private and public levels. This approach offers a common-sense strategy, effectively bridging the gap between the success of early-detectable cancers and the harsh high morbidity rates of cancers only diagnosed at late-stage.

Update: Significant Breakthrough

HEALTHY PEOPLE GET CANCER TOO; We are all healthy until we are not.

None of us can predict when we might face a cancer diagnosis. Even healthy individuals, including doctors, nurses, and scientists, are not immune. That’s why being well-equipped with knowledge and resources becomes a crucial factor and advantage if we are ever unexpectedly diagnosed with a serious cancer.

There is nothing in life or the science of life that is not vulnerable to being knocked off its precarious pedestal of certainty. The only certainty in life is that there is no certainty, just obstacles and their possibilities. Therefore, the opportunity within life is to see the possibilities within the obstacles and then set about making them our reality.

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

Shifting Perceptions: Changing the Angle of Attack

To succeed over cancer is to dismantle the diagnosis, to strip it of its reputational packaging, to see it as it really is, not as you fear it is. It is only then that you will be ready to effectively respond.
Follow the Process: The Process methodically breaks the cancer down into small, winnable pieces. It keeps you focused on conquering each step in front of you now – today, removing the disempowering distractions posed by the enormity of the challenge. One step seamlessly follows the next wearing down the cancer’s defences until they are no more – until cancer is no more.

A crucial distinction: “I Have Cancer” is an objective fact. In contrast, “I Am Going to Die” is very subjective, a borrowed opinion, not a fact. It does not factor in the capacity of a well ‘Equipped and Empowered Patient.’

When diagnosed, it’s critical to see a cancer diagnosis as it is, not as you fear it is; being diagnosed is just a position, not a fate. This clear view unleashes your courage to act on what’s controllable and accept what isn’t. That is when you’re truly ready to respond.

You must quickly move to accept the things you cannot change, have the courage to change the things you can control and change, and possess the wisdom to know the difference. You cannot control that you have cancer, but you can control how you will respond.

Shakespeare said, ‘Nothing is either good or bad, but thinking makes it so.’ Our perception and the stories we tell ourselves determine whether it’s a good story, a bad story, or no story at all.

I recall Theodore Roosevelt’s words, “We must all wear out or rust out.” I choose to wear out. This mindset powered my response when given just weeks to live.

All this is simple, but not easy. It takes practice, persistence, perseverance, and a disciplined focus that comes from taking full responsibility. We as patients must think differently, we must have creative persistence and we must hold our poise and grace – our nerve.

To repeat how I began this page: We must Act with Deliberation, Boldness, and Persistent Creativity: We all have the ‘Inner Will‘ and ‘Freedom‘ to choose these innate attributes at any moment, it is up to us – it is an indisputable right that only we can relinquish. ~ All the best, Steve