The Disruptive Methodology:
A Code Shaped From Our Battlefield

My Standard, Difference, and Aspiration

• My standard is to give my best. That is all anyone can give of themselves. You cannot give more than that.
• My difference is that I do this all day, every day, without condition or guarantee. That was how I faced cancer, and that has become my life and my way.
• My aspiration is to pursue my remarkable, whatever that may be; that will be what defines my best. We all hold this capacity within us. That is the legacy I will leave.

Changing What Does Not Work

Lead by example. Show how it works, where before it did not or was thought not possible.

Too often, the well-worn, known ways trap our thinking and suffocate our creativity. That is when we must think our way out, where we must lead change, when change is the only way forward.

That was who I became, and why I did not drown crossing the sea of other people’s realities.

But that takes relentless discipline, something I did not know I had until put to the test. Most thought me stubborn because I did not accept or comply with their realities. It made them feel awkward and uncomfortable. They mistook my discipline to survive for stubbornness. They could not see my survival; I could. I just wanted to live.

That discipline to retain my own reality fueled my perseverance. It completely defined my escape from an unbeatable cancer diagnosis. It further shaped my thinking. It became the lifeboat that carried me across.

From Survival to Systemic Responsibility

Surviving a Late-Stage IV terminal diagnosis with only weeks left to live is all-consuming. Even after the news, Claire and I were still very much locked in battle mode. We had experienced and witnessed what most will never see, and with that came an unexpected responsibility.

We knew what needed to be done, but this would be a monumental undertaking, one far beyond what we thought we were capable of.

But who else would do this if not us?

We began forging a response-based approach designed to immediately enhance a patient’s effectiveness within the standard of care, and extend beyond it when conventional options seem at an end.

We focused entirely on the immediate survival of today’s patient. Now. In this exact moment. There was absolutely no room to defer to the never-ending promises of tomorrow’s cure, nor leave people to fall through those lonely, isolating gaps that are an inherent part of healthcare. What we built had to work right now, no matter how small or insignificant an action might seem in the present.

It would be a model rooted entirely in survival execution, not advocacy or awareness. We both had seen the lost options and harsh lessons in that.

The Three Battlefronts

We would work across three equal battlefronts: driving today’s patient survival, preventing today’s families from becoming tomorrow’s patients, and building an entirely new culture of active response.

As I said to Claire many times during our journey, we cannot let the financial tail wag the dog. As with any objective, no matter how noble, we need funding to build, scale, and deliver this work. But we will never let funding dictate our direction.

Effective advocacy and awareness will always follow what works, not the other way around. While both have their part to play, in an active crisis, we cannot allow institutional campaigning or broad awareness to distract or interfere with executing what works right now.

For a family diagnosed with cholangiocarcinoma, every minute of every day is an active rolling crisis. That is the crisis we must turn up for every single day. This challenge we have been entrusted with is not about lobbying; it is about survival execution. So we decided to be absolute about it. We built a patient-led foundation to operationalise that exact responsibility across three clear objectives:

1. Today’s Patient Survival: Now. Today.
Execute what works and what is possible right now. Eliminate all systemic distractions, bureaucratic delays, and cognitive noise that stand between a patient and an immediate, effective response.

2. Prevent Tomorrow’s Patients, Today.
Bring the biological clarity of the conditions of cause to families earlier. Provide earlier understanding of upstream cause, see its prevention so loved ones can avoid becoming tomorrow’s newly diagnosed patients.

3. Build a Culture That Is a Survival System in Itself.
Forge a powerful understanding focused entirely on earlier understanding and active survival execution over advocacy.

Drawing this line in the sand was a incredibly tough choice for a patient and caregiver to make. Funding broad awareness over active execution is the definition of letting the tail wag the dog.

Survival execution was the focus that had been poorly understood and entirely missing in this fight.

Claire and I will do now, today, what worked and what is possible. From lived experience and biological intelligence, we will carve out a survival pathway, clearing a path through cholangiocarcinoma’s conditions of cause, and the many institutional gaps and traps that wear down the patient their family’s efforts to win.

A path of earlier understanding; this was something we desperately needed when we were in the dark.

A path that would inspire patients, families, supporters, and their communities to improve on, to rally behind.