The words that follow on this page are bare and raw, I will evolve them over time and they will evolve me forward as I learn from them – they represent what has happened and give me a foundation to rebuild.
Sharing my thoughts and thinking.
I hope that sharing my experiences, it gives something tangible which can help others who are facing what appears to be an unwinnable challenge. A Challenge beyond their conscious measure – and the many others who are also limited by a collective conscious measure.
One other note:
Regarding my diary notes post that I called “My Walk with Cholangio the Beast,” I have left these words as they were written – Warts n All, as they are my history, my seeds of rebirth – the words as they were written anchor the moments.
Chief Evangelist for Cholangiocarcinoma
Happen life or life will happen on you, having said that . . .
Happen on Life or life will happen on you
Having said that, life still happened on me, and it did so in a bloody big way!
Who knows how things will unfold in life, I really thought I had it all perfectly planned out. My favorite pillar of thought has always been, “Happen on Life or life will happen on you,” hmmm how did that work out for me.
Health and other stuff Happens
2012 I broke my neck in a cycling event, and was paralysed down my right side for 9 months.
2016 the most hostile metastatic and terminal cancer on the planet – like metastatic Pancreatic Cancer, Cholangiocarcinoma defeats over 95 % of its victims within 5 years – I was given 6 months to live and it came down to just days and minutes. I have been deep within the jaws of death on several occasions, my survival can be attributed to a combination of medical genius, and a mindset that helped good luck unfold. I think these types of events would blow a significant hole in the best of plans, but worse than that, I dragged my family through a very dark living hell.
Winning the Global Lottery
I became one of just 4 people globally, to have ever reversed and survived metastatic stage 4 Cholangiocarcinoma, via immunotherapy (Keytruda).
Claire and I owe special thanks to CCF USA, who flew us to Salt Lake City where we meet 2 of the 4, (and other patients.) They also hosted us, along with 300 of the worlds best Cancer Researchers, Oncologists, Surgeons, and Pharmaceutical Companies, who had all come together to focus on this terrible cancer.
Over the past 4 years, I have met many people and been to many places I didn’t know existed. I have experienced significant insights into myself and humankind – the stuff of nightmares and movies, yet within all this, great things rose up. It will take me some time to comprehend and file all that I have experienced and learned.
Writing it out of my head.
When cancer struck, a wise friend (Kev) told me to record my journey so I would not forget, and it would also be something for the kids to remember me by. Kev’s advice unwittingly exposed that I did not understand my own thinking machine and the processing of “thoughts in and thinking out.” I guess I had never thought about how it all worked – it was, what it was. Regardless of this ignorance, my thinking machine had become clogged, congested and far less equipped to take on the challenge ahead. It needed an overhaul before I began adding more to the clog. I needed to ditch, and dump, clean it all out and better understand myself. So I created “Chapters of Me,’ a series of loosely titled chapters on my iPhone App – Evernote. I then began the big empty out, rapidly dumping everything out of my head into chapters of me. Hmmm easier said than done! Then came the big sifting, simplifying, and sorting – this was without a doubt one of the hardest things I have ever undertaken, it was very confronting stuff, yet liberating at the same time. I was regaining a sense of self-control despite my fast physical deterioration. It gave slithers of sunshine and hope.
My reality is my reality –
I had essentially begun to write myself out of a bad story and into a much better one – a new reality began. I created a parallel world to escape too, a place that fed my dreams and visions, allowing them to breathe and make plans that needed no logic or the approval of others. I had left little space in my thoughts for the creeping shadows of death and demise. I am a great believer in the self-responsibility of continued education, and following the science where it exists. I am not a believer in the magic pill or alternative treatments that have no foundations in science. Keytruda has the science, so I took the chance, there were 9 of us, I made it, the other 8 were not so fortunate. The full opportunity within life, will always be just beyond my conscious measure, so to reach out and extend beyond it, is to embrace more of that opportunity. This is the same formula for everything in life – sport, business, family, and friends, it’s all the same really, it just takes honest discipline and a consistent effort to engage in the potential, that life affords us all.
The Magic trick –
I knew if I was to survive then I would need to pull off a seemingly impossible “Walk on Water” magic trick, which defied the realities of the majority, and the stats that proved them right. To me, those stats are just an indicator of past results. I am not religious or spiritual, but I am a believer in remaining open to the possibility, that we can walk on water if we need too.
‘Need’ drives the intangible to find its outward expression, therein lies the ‘magic.’ Anyone who remains open and willing to this possibility, has a chance. This became the single defining factor that saved my life.
Alongside Pancreatic Cancer, CCA is the most hostile of all cancers.
My diagnosis –
- Extrahepatic (Distal) Cholangiocarcinoma
- Terminal – 6 months
- Surgery: 12 hr Whipple possible.
Chief Evangelist for Cholangiocarcinoma
The smallest and most insignificant of things, can change the world.
2 Surgeons, two different operations both unaware of what they achieved and the part they have played in my outcome and medical history.
Keong – Surgeon for Harald Puhala (probably incorrectly spelled)
He was part of the 7 surgeon team that operated on me for the best part of 12 hours on the 8th December 2016.
At my first outpatient post-surgery interview, Keong gave me the full rundown on the success of the Whipple Operation, (Clear negative margins) and then followed up with the grim terminal outlook of an almost certain metastatic recurrence and finite outcome within 18 months. There was no treatment they could offer to prevent this.
However he threw me a bone, he said he had been doing some homework and offered to help get me onto a Hamburg chemotherapy trial that was been administered by a doctor called Matthew Burge out of Royal Brisbane and Women’s Hospital – I jumped at the chance and Keong made it happen. That trial was a complete failure, actually, it was ugly and debilitating, but I was now in the care of Dr. Matthew Burge’s, who was also the doctor heading up the Queensland arm of the international Keynote Trail 158. The rest, as they say, is history-making
Without Keong’s homework, suggestion and help I would never have met Matt Burge.
Dr Tom Snow – Interventional Radiologist (White Knight)
One month post my Whipple surgery on January 5th 2017, Life came down to seconds as I was rushed unconscious to hospital in the back of an ambulance. If not for the luck that Dr. Tom Snow was still in the hospital. grounds and his talent I would not have survived a major aneurysm event to my main hepatic artery – I was literally down to seconds.
Without Tom I would never have made it and meet Matthew Burge.
I would have died in 2017 if not for this man
Dr Matthew Burge – About
Although Matthew is discussing Bowel Cancer in this video and not Cholangiocarcinoma, I wanted to include this as a way of meeting him.
Matthew headed up the trial (Keynote 158 – Keytruda) that pulled me back from within the jaws of certain death. Dr Matthew Burge is undoubtedly an Oncologist who is current with the developments in Cancer treatment. Being current in cancer treatment is changing outcomes.
I would have died in 2017 if not for this man
Nobel Prize Link – About
Dr. James Allison is Regental Professor and Chair of the Department of Immunology, the Olga Keith Wiess Distinguished University Chair for Cancer Research, Director of the Parker Institute for Cancer Research, and the Executive Director of the Immunotherapy Platform at MD Anderson Cancer Center. He has spent a distinguished career studying the regulation of T cell responses and developing strategies for cancer immunotherapy. He earned the 2018 Nobel Prize in Physiology or Medicine, which he shared with Dr. Tasuku Honjo, “for their discovery of cancer therapy by inhibition of negative immune regulation.” Among his most notable discoveries are the determination of the T cell receptor structure and that CD28 is the major costimulatory molecule that allows full activation of naïve T cells and prevents anergy in T cell clones. His lab resolved a major controversy by demonstrating that CTLA-4 inhibits T-cell activation by opposing CD28-mediated costimulation and that blockade of CTLA-4 could enhance T cell responses, leading to tumor rejection in animal models. This finding and a great deal of persistence paved the way for the field of immune checkpoint blockade therapy for cancer. Work in his lab led to the development of ipilimumab, an antibody to human CTLA-4 and the first immune checkpoint blockade therapy approved by the FDA. Among many honors, he is a member of the National Academies of Science and Medicine and received the Lasker-Debakey Clinical Medical Research award in 2015. His current work seeks to improve immune checkpoint blockade therapies currently used by our clinicians and identify new targets to unleash the immune system in order to eradicate cancer.
A luxury to summarise
Surviving cholangiocarcinoma was to survive the stats that had me buried before I had drawn my last breath.
I had to learn how to “Walk on Water” above the realities of others if I was to survive. I had to survive from the inside out.
I remember when I was diagnosed, thinking “It can’t be all that bad, I’ve never heard of it”
Surviving any cancer is very tough for anyone, but to mentally face up to survive the most hostile of all cancers alongside Pancreatic, is a very deep abyss to comprehend. Metastatic Cholangiocarcinoma gave me a token gesture 1% chance of survival, it reads very badly and leaves no survivors in its wake.
Life is Evolutionary with or without me ! We are all engulfed in this constant evolution. Embrace it, I do
Living life is most definitely in the eyes of the beholder, but it sure feels really really good, when we are all on the same song sheet and fully in sync with what we see