A Code Shaped From The Battlefield.

My standard is to give my best. That is all I can give, and 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 build the remarkable for others to benefit. That is how I stay at my best. That will be the legacy I leave. There can be no better purpose or privilege in life than to help others do the same.

Changing What Does Not Work

Lead by example. Show how it works. I have always aimed for the remarkable. It lifts me. It is how I can give my best, and it is also how I create change when change is the only way. That is how I did not drown in a sea of other people’s realities.

But that also becomes a character flaw in the eyes of those comforted in conformity. Most thought me stubborn because I did not accept or comply. It made them feel very awkward. But I was not stubborn or special. I just wanted to live. That discipline to retain my own reality completely defined my escape from an unbeatable cancer diagnosis. It further shaped my thinking. It became the lifeboat that carried me across.

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 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 another challenge 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 that would 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 today’s patient survival. Today. Now. There could be no room to defer to the never-ending promises of tomorrow’s cure, nor leave people to fall through those lonely, isolating gaps that exist once the standard of care is out of options. What we built had to be what works right now, every day, no matter how small or insignificant it may seem in the present moment.

It would be a model rooted entirely in survival execution, not distracted or delayed in advocacy and awareness. We both had seen the harsh lessons in that. We work across two equal battlefronts: driving today’s patient survival, and preventing today’s families from becoming tomorrow’s newly diagnosed patients.

Advocacy and awareness must follow what works, not the other way around. While both have their part to play, in an active crisis, we could not allow advocacy and awareness to distract or interfere with executing what works right now. For a patient diagnosed with a bile duct cancer, every minute of every day is a crisis. That is the crisis we must also turn up for every single day.

As I said to Claire many times, we cannot let the tail wag the dog. This challenge we have been entrusted with is not about campaigning, lobbying, or awareness. We must execute survival tactics all day, every day, because that is what has been missing in this fight, and it is urgent.

So you now have the background insight into a foundation we built to operationalise the responsibility.