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

2 brothers diagnosed with the same aggressive terminal cancer and 6 months to live. 

“Steve survived, but Graeme did not. Steve’s survival became a modern-day medical breakthrough that provided a new doorway to how patients can better respond and survive a serious cancer diagnosis.”

Surviving stage 4 metastatic and terminal cancer is remarkable in itself, it attracts attention, and therein lays a new unexpected responsibility.

Cancer patients suffer a lot, that’s what it is to be a patient, so anything that I can do to alleviate that suffering is a good thing, a positive thing, a meaningful thing. Sharing my story, knowledge, experiences, and wisdom in the best way possible does exactly that, it helps make other patient’s lives more liveable and shines a light on what is possible.

cancer READY

I find a lot of patient suffering comes from not understanding things and the confusion and overwhelm that comes from that. So helping people understand their diagnosis and options is a good start to improving their survival chances.

I have also learned the advantages of becoming cancer-ready, just as CPR awareness and basic knowledge can improve survival rates.

steveHOLMES

2 brothers diagnosed with the same aggressive terminal cancer and 6 months to live. 

“Steve survived, but Graeme did not. Steve’s survival became part of a modern-day medical breakthrough, providing a new pathway for how patients can better respond to and survive a serious cancer diagnosis.”

Surviving stage 4 metastatic and terminal cancer is remarkable in itself, it attracts attention, and therein lays a new unexpected responsibility.

Cancer patients suffer a lot, that’s what it is to be a patient, so anything that I can do to alleviate that suffering is a good thing, a positive thing, a meaningful thing. Sharing my story, knowledge, experiences, and wisdom in the best way possible does exactly that, it helps make other patient’s lives more liveable and shines a light on what is possible.

cancerREADY

I find a lot of patient suffering comes from not understanding things and the confusion and overwhelm that comes from that. So helping people understand their diagnosis and options is a good start to improving their survival chances.

I have also learned the advantages of becoming cancer-ready, just as CPR awareness and basic knowledge can improve survival rates.

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MY VIDEO STORY

Part 1 | Part 2

Cycling 14,000kms

UPDATE: I am now at 6150 km approaching Broome in WA

I am currently cycling the equivalent of Australia’s coastline to raise funding for the development and delivery of Free Patient Navigator Journals. Imagine pedaling the entire coastline of Australia – that’s 14,000 kms. Ouch! It’s a pretty challenging effort, but one with a purpose far greater than the distance.

Be Bold

Bold Deliberation and Persistent Creativity

When responding to a serious cancer diagnosis, we must move forward with bold deliberation and persistent creativity. By being open-minded and acting with unrestricted willingness, we generate the perseverance and endurance needed to flip cancer on its head and break its grip.

A journey that keeps on giving

Inner Will and Freedom

We all possess the ‘Inner Will’ and ‘Freedom’ to choose our response at any moment—an indisputable right that only we can relinquish. It’s crucial to remain proactive and engaged, transforming our perspective on cancer from its feared reputation to seeing it as it is – a challenge that can be broken into manageable peices and navigated with informed, thoughtful actions.

Shifting Perceptions: Changing the Angle of Attack

Cancer arrives wrapped in reputation. However, we can change and control our perspective towards it – we can look through its reputational wrapping to see it as it is, not as we fear it is. We can turn our fears into focus, we can perform a mental flip to see deep into its underside, its weakness, and our opportunity. As with life itself, our lives result from the constant ebb and flow of obstacles and possibilities, therefore we must remain creatively open and vigilant. My journey through the dark voids of cancer underscores the innate resilience attributes we all possess – the unrestricted willingness to pivot and transform.  It is then that we are ready to act and respond on our terms.

Leading with Responsibility

As patients, we must transcend being mere passengers we must become part of the solution. We must help those who help us even in our darkest moments, we must lead with this responsibility. This responsibility extends to our medical professionals who must remain ever-vigilant and proactive like high-performance athletes they must be more than mere participants they must find that transformative edge – that is the responsibility they carry to the patients in their care.

The Transformational Power of Character and Perseverance

We must all surround ourselves with remarkable and resourceful people of great character. People of great character and perseverance embrace and thrive on life’s obstacles to unlock unseen possibilities and pathways. Embracing such people transforms the impossible into new realities, just as with the light bulb or the moon landing or my cancer breakthrough –  Persistence and perseverance, are often the true champions of perceived genius. Therefore we must be a little unrealistic often, and feed our dreams whatever they may be or become – feed their fictions, give them life.

Consider fiction as sparks to a new flame

Fiction always proceeds its Reality. We must give life to our fiction to unleash its potential reality. The Definition of Fiction; “Something imagined – a story not yet real” – ‘NOT YET!’

Thoughts are Things: Real Things – Give them Life

Thoughts are sparks of energy, thinking upon them gives them life. Write them down and turn their fiction and possibilities into your reality.

I had to cross an ocean of other people’s realities. Realities that had me buried before I had drawn my last breath. Their fiction was my reality: My reality is mine and their reality and fiction were theirs – therein lay a critical distinction to outcomes.

My Story

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

One moment I was fit, healthy, and cycling, the next, I was battling terminal cancer. A routine Saturday morning coffee ride turned into a fight for my life when I was diagnosed with Cholangiocarcinoma and given just six months to live.

As it transpired, my passion for cycling carved out a path through decisions and connections that ultimately saved my life. I endured 25 hours of multi-organ surgeries, including a major aneurysm, and 2.5 years of intense drug infusions. With just weeks if not days to live my oncologist, Dr Matthew Burge threw me a last-minute ‘Hail Mary’ in the form of a highly speculative experimental clinical trial, ‘Keynote 158.’ I caught Matt’s pass, and scored a touchdown in just three days (unofficially). By week nine scans confirmed my result.

With Claire’s help, I had defied the impossible, flipping ‘Cholangio’ on its head to record a historic medical milestone – a dynamic ‘full-and-complete-response’ something never before achieved from such a late-stage setting.

Another moment in time

Being informed of my full and complete response — No Evidence of Disease (NED) — was profoundly moving, a moment beyond words, yet it steered Claire and me towards the path we now follow.

A Graduating Moment

As the scan loaded on Matt’s computer screen, time once again stood still. All I could manage to ask was, ‘Where are they?’ His reply, simple yet profound, ‘That’s just it, Steve they’re gone.’ My mind and eyes struggled to process the magnitude of his words. ‘So, what now?’ I asked, still in disbelief, and so another moment in my life unfolded.

In a moment akin to a graduation speech, Matt, offered a few transformational words of wisdom: “There are many that 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 been given – see you in 3 weeks –

Where to Next?

My unlikely survival became an unexpected responsibility. Claire and I decided to dedicate ourselves to transforming patient outcomes, we knew we could help today’s patients understand and more fully utilize today’s science and medical options. Our guiding rule became: Empower the Patient – Increase Survival; Empower their community – Exponentially Increase Survivorship.

We both understood that the key to success lay in developing a process that not only integrated patients’ innate resilience attributes with established healthcare practices but also incorporated the latest medical science and best practices. This process needed to be meticulously structured to align and synchronize patients, their medical teams, and supporters effectively. Crucially, it had to enhance the quality of engagement by all involved and significantly improve the patient’s capacity to respond and survive.

So we began building what we called an optimal cancer response process, then started a foundation, and are now taking this forward from the reactive response setting to the proactive ready position to help workplace environments become part of the solution. A strategy that shifts the battle from the bottom of the cliff to the top.

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
Understanding Engages

Understanding cancer increases effective engagement, and effective engagement leads to improved survival outcomes. It’s a straightforward, uncomplicated approach, but profoundly effective amidst the chaos of a cancer challenge.

Resilience Through Adversity

Through hard, harsh experiences, I’ve learned that often my only option is to keep leaning into life. Hence my saying, ‘Lean into life, or life will surely lean back even harder.’

The Power of Hope

Hope is real and often our only strategy. It provides bridges across unknowns and shines a light in the darkness. It points us in new directions, without the comfort of guarantees or assurances. There is no false hope, only hope itself. Embracing hope requires boldness and persistent creativity, and whether to embrace it is a choice that lies within each of us

A Lifestyle Mantra

Additionally, I have embraced the mantra: ‘Eat Lite – Move Lite – Live Light, Be Open – Be Willing Without Restriction and Creatively Persistent.’ I realized these are both processes; I simply had to become aware of that.

Why Cycling?

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.

What I Do

Together with Claire, we co-founded the Cholangiocarcinoma Foundation Australia, a ‘patient-led’ registered charity with a deep knowledge and understanding of the patient journey. Claire serves as the Director of Operations, and I am the Managing Director and Chief Executive, guiding our day-to-day functions.

The Foundation is recognized as Australia’s essential hub for knowledge, support, and education, strategically benefiting patients, their support networks, medical teams, industry, and scientific partners to improve patient survival.

Our primary goal is to elevate the health system’s standard of care model by bolting on ‘Patient-Integrated’ response processes at one end and the latest evidence-based medical science at the other. This robust, three-part approach is essential in addressing cholangiocarcinoma—a cancer with no known cure and a dire 5-year survival rate of just 3-5%. Surviving this diagnosis requires a more dynamic and comprehensive solution than the standard-of-care can offer.

We believe that the Empowered Patient is uniquely positioned and equipped to understand, engage, and succeed. Our foundation is committed to continuously researching and implementing strategies to empower and align patients, their medical teams, and their wider support community. We also believe that these efforts will meaningfully mitigate the burdens faced by families, communities, and the healthcare system itself.

We Help Patients Help Themselves – can you also?

Something Special

The Essence of My Contribution

What I undertake today is the embodiment of that “something special” Dr Matthew Burge referred to when he informed me I was NED.  Contributing to the empowerment of others, offering them the tools and knowledge to face their battles, stands as the ultimate reward and purpose of my efforts – a heartfelt thank you to Matt.

I sincerely hope that my personal experiences can drive and shape innovation and change in healthcare, that improves patient outcomes by today’s measure.

The future of CANCER

Empower the patient – Increase Survival: Empower their entire support community – Exponentially Increase Survival – Is that too simplistic? 

The Empowered Patient stands uniquely positioned and equipped 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 both privately and publicly. This approach is a common-sense strategy, effectively bridging the critical gap between the success of early detection and the dire statistics associated with late-stage diagnoses.

Update: Significant Breakthrough

RealityCheck

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.

Life, Science,and Certainty

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.

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?

Changing the Angle of Attack

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.

I Have Cancer I Am Going to Die

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

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

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