Everything has a beginning
At a mid-week cricket training session, my dad Dennis who was the coach of a local cricket team suffered a sudden and massive heart attack, both me and my brother Graeme were padded up in the nets and Dennis was fielding our practice shots.
Dennis’s life ended on that practice wicket and Graeme and I were abruptly introduced to the impact of death.
I was just 29, newly married to Claire, and expecting our first child. Graeme was 27 years and dad Dennis was just 52.
Fast forward and Graeme now 50 yrs old, married with 2 children was diagnosed with a very rare and aggressive cancer called Cholangiocarcinoma – a cancer of the bile ducts that begins within the liver and impacts the liver, pancreas & many other organs in between.
Cholangiocarcinoma has an overall survival rate of less than 8% or less than 1% if metastatic. There were no recorded or known survivors from a stage 4 metastatic setting at that time.
Graeme’s doctors had no background experience or knowledge of how to treat this cancer, and he passed away after an unsupported and one-sided 18-month battle against a skillful undefeated beast of a cancer.
November 2016 and I received almost the exact same (nonhereditary) diagnosis as my brother Graeme.
No patient had ever succeeded over Cholangio the beast from a terminal stage 4 metastatic setting, there was no one for me to throw my “hope rope” around.
I was sitting in a surgeon’s consult room to be assessed for surgery to remove a small stricture in my bile duct, which didn’t sound too bad. But then came the curve ball . . . “Oh, I am sorry, did no one tell you that you have cancer?” It was those last 3 words that sent me spiraling down into a giant dark abyss with no bottom
It took 25 hours of life-threatening surgeries, including an emergency aneurysm while recovering at home. When the ambulance team wheeled me into that surgery, I still needed the skill of an interventional radiologist, luckily there was one in the hospital carpark about to head home – he made it, and then I made it with just minutes to spare.
Without Claire and the rapid response of the Gold Coast ambulance, the speed & skill of Dr. Tom Snow, then I would not be here to type these words.
Because of that surgical save, I went on to participate in 2 international clinical trials conducted by Dr. Matthew Burge at Royal Brisbane & Women’s Hospital.
With just weeks if not days to live, Matt got me on a 2nd trial and part of a new medical breakthrough – a historic win for GI cancer patients.
Unofficially it took just 3 days to become the 2nd ever CCA patient to fully recover from a terminal stage 4 metastatic setting, and one of the 1% of the 1% of all cancer patients to completely reversed a Stage 4 cancer diagnosis.” Medical ref; Keynote 158
Continue reading to view the diagnosis, results, video, and family
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My treatment pathway has been meticulously recorded so as to contribute forward to the next generation of patients and patient success.
My cancer challenge and response 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 experiences I have gained provide insights into developing the “Next-Generation” in Cancer and Patient Response Pathways, that are required beyond the diagnosing physician’s office.
I specialize in developing & delivering highly targeted Cancer literacy resources for patients, community, and workplace populations.
Industry adviser to Cancer organizations and focus groups, including working with pharmaceutical company initiatives that better equip and empower a patient’s capacity to respond.
Global patient mentor and coach able to simplify and communicate the benefits of molecular (genomic) profiling, immunotherapy & targeted interventional treatments.
The overarching objective
- Better equipping people before they are a patient translates to better-equipped patients, and better-equipped patients translate to improved survival outcomes
- Better equip businesses, workplaces, and communities to become a significant cog in the cancer success equation.
CEO Cholangiocarcinoma Foundation Australia
Director Cholangiocarcinoma Foundation New Zealand
Director The Main Beach Foundation (Putting community responsibility back into cancer)
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The Next-Generation Patient and the Patient Response Pathway beyond the diagnosis
Generally, when I am asked to speak, comment, or contribute, the key topics are as follows ~
The Next Generation Patient
- Equipped & Empowered -Literate, open, and willing (Being a little unrealistic)
- Aware and Focused – Looking through the impossible to where it can be
- Open – Willing and a little unrealistic – Your reality is yours and their reality is theirs – a critical distinction if you want to land on the moon
Next Generation Patients Response Pathway
- cancerCPR – Newly Diagnosed Patients do not know what they do not know, yet must
- cancerCPR – Bridging the cancer abyss and the pathway beyond diagnosis
- patientSYNC – aligning & empowering the patient’s whole support community
cancerREADY – getting ahead of the climbing cancer curve
- Pre-Patient – Preparing people before they are patients
- cancerREADY workplace advantage and business cancerREADY accreditations
- targetedLITERACY – Better utilization and delivery of current and existing cancer & patient literacy
- NGS Uncloaking Cancer – DNA, Genomics, and Immunotherapies 101
- The Checkpoint Pathway – the biggest medical breakthrough since penicillin.
- Patient successes that are influencing change – Adams Story and the second opinion conundrum.
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