Steve Holmes
CEO Cholangiocarcinoma Foundation Australia & NZ
Founder/Director of The Main Beach Foundation
Patient: Metastatic Stage 4 terminal Cholangiocarcinoma. Diagnosis; < 1% survival. Av survival period 6.7months
One day I was cycling, the next, I was deep within the jaws of certain death. To break free and climb back out, there was no manual for such a challenge it just came down to a willingness to transcend what seemed impossible. Much was learned – Stuff that needs to be shared – An unexpected responsibility
Helping Business & Industry
better equip & empower
their workplace & employee’s response to an unexpected cancer diagnosis
Purpose and Focus
A cancer diagnosis is almost always unexpected, chaotic, overwhelming, and disruptive.
Too many unnecessary and avoidable cancer deaths continue because newly diagnosed patients “do not know what they do not know, yet must.” This is a problem that begins well before a person becomes a patient.
Health Literacy in the workplace as it relates to responding to an unexpected cancer diagnosis is a very unattended and under-appreciated resource that could constructively contribute to reducing avoidable cancer deaths.
My primary purpose is to help reduce unnecessary and avoidable cancer deaths.
I do this by
- Developing and implementing resources that better equip and empower business, industry, and community leaders ahead of or in response to an unexpected cancer diagnosis in their workplace environments.
- Resources that better utilize and deliver what is already known and available.
Highly targeted information delivery
Just as science is working hard to develop the next cancer cure, it is also our responsibility to work equally as hard to better utilize and deliver what has already been discovered and approved to those most in need. Currently, this is a very overlooked and unattended strategy.
Why business & Industry?
Business and Industry are the foundational pillars that underpin our family, community, and society, they are also the epicenter of the ‘Pre-Patient’ population, Pre-Patients are people who are not yet patients. This is a population sleepwalking unaware into a steeply rising trend of cancer diagnosis.
By applying the resources I develop at this center we are tackling the problem ahead of the curve and increasing the amount of newly diagnosed patients who are better equipped – when it comes to cancer this is a distinct survival advantage.
Lived Experience
In October 2016 I was diagnosed with a very terminal and seemingly unbeatable cancer diagnosis that completely derailed my life giving me just 3 to 6 months to live. There were no known survivors from a stage 4 Cholangiocarcinoma setting at that time.
Fast forward to October 2017 when I was diagnosed cancer-free, NED (No Evidence of Disease) a full and complete response, the second ever such success via Merck’s international clinical trial Keynote 158.
What happened in 2017 placed me at the center of a stunning modern-day medical breakthrough. I had unwittingly graduated with a very intimate and unique knowledge in modern medical breakthroughs and what is now possible for patient survival.
To my knowledge at the time of writing, just 3 or 4 CCA patients globally have fully responded to overcome a late-stage (stage 4) metastatic CCA cancer – I am fortunate to be one. This was also the beginning point of a new challenge for which I had zero skills – to communicate what I had learned to those most in need.
Patient Pathway & Navigation
My treatment pathway and experiences have been carefully recorded to contribute to the next generation of patients and patient success – the next generation patient pathway.
Lived experiences have uniquely equipped me to help “Know what must be known, in the order it must be known ahead of or from that very moment of receiving a diagnosis.
The experience I have gained has fuelled my inspiration to increase my efforts in developing the Next-Generation in Cancer Response Resources and Patient Response Pathways beyond the diagnosing physician’s office.
Hope is a plan – it is often the only one
When Physicians run out of options as is often the case, then “Hope” is the only resource left in a patient’s toolkit.
It’s my job to give that “Hope” the structure it needs to move forward beyond the diagnosis and the vision to see what could be possible.
“Hope” is outside the purview of the diagnosing physician but they should still support it in a constructive and meaningful way.
Who do I help?
Newly Diagnosed Patient
Someone unexpectedly diagnosed with cancer – the coalface of the cancer battle.
The Participants:
Diagnosing Physicians, Healthcare Providers, Caregivers & Patient Supporters.
I develop resources to;
- Provide an immediate bridge across the cancer knowledge abyss
- Ensure they immediately know what must be known in the order it must be known.
- Provide a roadmap beyond the diagnosing physician’s office
- Reduce Chaos, overwhelm and improve confidence and decision making
- Support and synchronize the patient’s supporter community
The Pre-Patient
People who are not yet a patient – Healthy people also become patients.
The Participants:
Business, Industry, and Community leaders.
I develop resources to
- Help workplaces to be prepared for the most frightening experience a staff member can have.
- Better equip and empower workplace environments with action plans and advice
- Prepare a critical awareness of the go-to / starting point when an unexpected cancer diagnosis occurs
- Mitigate workplace disruption by replacing fear with knowledge and actions
- Support and synchronize the patient’s workplace environment/community
How I help
Knowledge is Power
Generally speaking, knowledge is power, but when it comes to a cancer diagnosis, knowledge can become the defining factor in life-or-death outcomes.
~Sagh~
Your Fiction – My Reality
“Sometimes great achievements can only come at the expense of other people’s realities. I have found that being a little naive and a little unrealistic has helped me see beyond the limitations of those realities.
~Sagh~
A Harsh Teacher
Cancer is harsh, yet it is a teacher if you allow it to be
“Cancer is harder than hard, it painfully and relentlessly exposed who I was, but it has also exposed what I was capable of. It taught me the value of self-accountability and its inescapable responsibilities, it taught me to look through the impossible to where it could be, this was a big contributor in achieving beyond what was thought possible…”
~Sagh~
