Contents in brief
My life seems to have evolved around a Simple Mantra that stuck and 3 core personality traits.
- Writing a story then living it
A SIMPLE MANTRA THAT STUCK
“Happen on life or life will happen on you”
Happen on Life
The “Happen on Life” bit gave me something to lean into everyday, I felt this defined me and my actions pretty well, it seemed a simple code to live by and a solid foundation for me to build a life on.
I have always have always understood that life is all about momentum and I was the one who had to create. Dreams and the challenges they create, is where my life’s momentum is born, so having a constant flow of dreams is very important in my life. I have learnt that many people will not move forward until proof guarantees the effort, but that is akin to winning lotto and become more averse to moving forward.
I think everything in life is a challenge and proof is a luxury that cannot always be trusted. I have found that leaning into the direction I wanted to go was the best strategy for me, it gave me purpose, direction and a strong sense of control over my life. I have been rewarded many times as opportunity seemed to find me, but in reality I had just been leaning into it for long enough to have had the chance.
Cycling and running became a great conduit into a vibrant and healthy ecosystem, an environment that unlocked and inspired me. Life was good when I was busy.
Or “life will happen on you”
A really good mantra until it doesn’t seem to work – “Happen on Life” (Yes -Tick) yet somehow “Life happened on me” anyway, and it did so in a very big way.
NOT ONCE – NOT TWICE BUT 3 TIMES
As much as Happening on Life gave me a strong sense of control, it all falls apart, if it does not stand up to the ultimate test of all – The flip side of my mantra – “LIFE HAPPENING ON ME!” and it happened on me in a big way. I very suddenly needed new tools to prop up my Mantra!
AND IT’S IN A STATE OF CONSTANT EVOLUTION
Life is a continuum of change and I know that I must somehow keep in sync with this change – thats just the nature of the beast (Life) – so to speak.
Stay current stay relevant, you never know what is around the next corner.
ACCEPTANCE – A SIGNIFICANT X-FACTOR
Acceptance was a reset button in life. Hitting this reset disarms and de-escalates the overwhelm, which allowed my mind to see more options and potential opportunities. i never saw acceptance as giving in, nor is it giving up, simply it allowed me more freedom to recognise the circumstances that i was in.
– All Black – Christian Cullen taught me this. –
UNCONDITIONAL WILLINGNESS – A SIGNIFICANT X-FACTOR
Seemingly simple, but simplicity can be very complicated. Recognising my own unconditional willingness was a revelation, because that is something you would not consciously think about on everyday basis. Willingness is the stuff of magic and has allowed man to walk on water and travel from caveman to spaceman. I think we are all born with this natural spring of unconditional willingness and it just fades out of our conscious life as we become more focused on adult stuff.
I am not sure why I began thinking in this way, but in reflection it became a significant resource, it became the one thing that I would fight for, Cholangio the Beast would not take this from me, it was mine to control and it would lead me out of the treacherous swamps of Cholangio. I very often clung to these words from a movie I had watched more than a few times – Rise and rise again until lambs become lions! – It literally got me back up to take that next step and the one beyond that without negotiation, I just did it, and I am not just talking physically!
– Russell Crowe – Robin Hood –
Write a story
WRITING ABOUT ME TO ME AND REWRITING A BETTER STORY IS A SUPER X FACTOR
Writing gave (gives) me a sense of control, its immersive, engaging and it opens up a parallel world – a world full of new possibilities.
I began by emptying myself out completely , dumping everything out into my Evernote app on my iphone. This was a very confronting process that freed my mind from the dark intimidating shadows that had overtaken me. By doing this I created a fresh canvas to begin rewriting a better story. The core bones of my new story resonated around the nuggets of gold that emerged after my dumping and sifting out.
1. Be a little unrealistic often and feed my dreams and aspirations -My looking Glass-
2. Do that ONE Thing!
3. Be Remarkable at it
4. Be Resourceful with it
5. Add Value to it
6. Surround it with people of talent and character who can make it a reality.
The Science of me and the Science that saved me.
STEPPING STONES HELPED ME WALK ON WATER
Acceptance, Willingness and Writing my story were all very important stepping stones that kept me going until a new stepping stone via Dr Matthew Burge and Keynote trial 158 with Merck’s Keytruda. My type of Cholangiocarcinoma was a very aggressive MSi-high type, it revealed itself quickly and dominantly in its metastatic behaviour. Keytruda activates a T Cell response by switching the immune system response to the “ON” position thus allowing the T Cells immediate access to the cancerous cells. T Cells are very efficient killers that destroy mutated cells in mere moments if they are activated.
WHAT I THOUGHT I DID WELL
- I let the science do the talking, I did not interfere with trial requirements in anyway, not even a multivitamin, I did 100% of what they expected from me.
- I kept the noise out – I chose who I let in.
- I kept busy within me and left little room for negativity
- I often transcended the ugly moments to my place – “Alices Place”, a place where my dreams could bath in their reality. If I was to give advice at all, then this is it – do not fall into the realities of others, continue to create your own until your last breath. Realities can very often be a convenience.
- I never had a bucket list – Had I had one, had I dipped into it, then it would have been all over Red Rover for me.
Thoughts & Attitudes define
On CBD/THC : I personally did not see the need at any level to go down this pathway. My situation living in the Gold Coast Australia meant I was plugged into a hospital system that has all the pain management tools to cover every situation. I saw no reason to use CBD or THC as a pain management tool here in Australia. As for the discussion cannabis halting cancer progression or destroying it in cholangiocarcinoma – it doesn’t – full stop. If I am incorrect then I along with many others are eager to meet those survivors.
On Food as a prevention or cure: Before cancer I would have said absolutely yes. Now with experience I say no. This is most certainly not my wider view on practising good eating habits to support healthy living in general. I look forward to the day when scientific evidence shows the food / cancer link as a primary cause or cure/
On Exercise as a prevention or cure: The same as view as food.
ON Fit and Healthy lifestyles: Too many fit and healthy people have perished to Cancer and in particular Cholangiocarcinoma.
On Cause and Cure: Do not waste precious energy on the Cause, the cure is closer. When the cure is in place we will then have the luxury of retracing our steps back to the cause (s)
On Immunology and Immunotherapy: This will provide the cure for almost all Cholangiocarcinoma patients and most other cancers -Immunology is fast moving beyond the current check point blockade therapy, but this is the foundation to breakthroughs for most mutations. (The Future of Immunology)
On Science versus the alternative medicines – Let the science do the talking: As divisive as this subject is, I can only share my experience.
In the beginning like most newly diagnosed patients I reached out for support via the health shop advice and knowledge. I also reached out to the wellness experts, but got overrun by wildly conflicting advice that further overwhelmed me. I stopped, I stepped back and looked for the proof in all this, science or alternative, it didn’t matter, I just followed the documented proof. As poor as the survival outcomes were, it was the science that had the documented proof, the wins and runs on the board, the alternatives in the wellness industry had zero.