Yes, a library for my thoughts

This page is a collection of my thoughts, a place to store them until I figure out where they fit in the grand scheme of things. All these thoughts played a significant role in keeping me on a direction that led me back to safety and survival.

Writing unburdens the emotion, it clarifies and organizes – it dampens the chaos

I write for myself, it gives me a sense of control, writing allows me to see my words, it cleanses my thoughts and lifts my effort.

Writing allows me to empty out the crowded thoughts, it lightens my load and gives me the space to accept, reset, and find my willingness.

Writing brings order to my thoughts and words, leaving less room for chaos to have way, it loosens fears grip and the overwhelm subsides.

Writing allows me to see myself, it fills me with hope and a new sense of control. It leads me on a journey to a parallel world, it allows me to build new momentum, vision, purpose, and direction, and it shines a light on what can be possible on what I could not see before.

It’s all real and raw stuff that provides a window into the mind of a terminal cancer patient – The biggest overhang over my thinking style was no one had ever survived this cancer from a stage 4 metastatic setting, an incredibly isolating and lonely edge on life, but it was an edge with an incredible view back over the crowded centre.

Important thoughts

“Sometimes great achievements can only come at the expense of other people’s realities. I have found that being a little naive and unrealistic has helped me see beyond the limitations of those realities” Many would disagree, it felt like the majority, yet I walked across their limitations and realities back to my family”

“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 is how I achieved beyond what was thought possible…”

To Walk on Water you must first believe that it is possible, you have to look through the impossible to where it can be. Then take that next step and the one beyond that until the magic of momentum reaches out and engages lifting you up and above the now. Transporting you to that place where your dreams can breathe and their visions and aspirations free to rise up and bathe in their own realities, and make plans for their outward appearance.

This is how we landed on the moon, and continue to do remarkable things today, that just yesterday were impossible.

Being a little naive and unrealistic often,  feeds the dreams and releases the visions and aspirations, that rise up from them.

  1. Be a little naive and unrealistic often – feed the dream
  2. Do that one thing,
  3. Be remarkable @ it,
  4. Be Resourceful with it,
  5. Add Value to it or don’t do it,
  6. Surround that created value with people of talent and good character, people who share the vision and can lift it to its reality.
  7. Pursue Perfection: The Pursuit of Perfection defines Value, purpose, and direction, it finds my edge and keeps me honest to the outcome.

SteveH

“Hope is real, it is the architect of our dreams, it engages our Willingness the builder that builds our dreams. With willingness we have momentum and with momentum, we can do magic. Momentum begins well before it can be seen by others, let it rise up, let it carry you up without restriction, let it inspire others to do the same.”

Not so random thoughts

Thoughts are Things – Real things

In any challenge especially the ones beyond what I thought I was capable of, I was forced into thinking differently which in turn produced new thoughts and new paradigms. Some of these thoughts stuck, they forged themselves into real things that reshaped who I am. What follows are those thoughts.

Life is an opportunity, but only if you fully embrace its challenge. Without fully embracing the challenge, there is no life, no opportunity, no nothing. You cannot prepare or plan for the unplanned, you can only trust in who you are and the willingness you possess within. How you think upon the uninvited thoughts is everything to the outcome.

I have a saying – Embrace change and see the opportunities within it, or change will embrace me with all its chaos and overwhelm. 

Look through the impossible to where it can be

To Walk on Water you must first believe that it is possible, you have to look through the impossible to where it can be, then take that next step and the one beyond that until the magic of momentum reaches out and engages lifting you up and beyond the now. Transporting you to that place where your dreams can fly free and their visions and aspirations rise up to plan their outward reality. This is how we landed on the moon, and continue to do remarkable things today, that just yesterday were impossible.”

Being a little bit unrealistic often, fed my dreams and the visions and aspirations that rise up from them, it filled my mind with what can be and left little room for the dire realities of others. Many thought me a dreamer and not in touch with reality, they were right, I was not in touch with their reality.

Not everything can be measured by science-fact or the reality of others!  Something I quickly came to believe in, I guess that sums up the type of person I am, yet I was saved by a science, a breakthrough that just yesterday was not fact, but today it is. That of course is an oversimplification that omitts the human factors that are equal to such breakthroughs.

“The Definition of Fiction: Something imagined, a collection of thoughts that form a story not yet real – NOT YET! – YET fiction always proceeds its reality

The only thing that separates us, is how we choose to think upon or about things.

There would be no reality if not first it was someone else’s fiction?
The Definition of Fiction; Something imagined, a collection of thoughts that form a story not yet real – NOT YET! Just as someone believed that the earth was round.

Underlining what I have previously written –  Fiction always proceeds its reality, that’s how we made it to the moon and how I overcame an unbeatable cancer challenge. Fiction is the seed of a new unborn reality, give it life, embrace its existence and it will relentlessly pursue its reality.

My reality is mine and Your reality is yours – A critical distinction most overlook, understanding this distinction has influenced my outcomes.

“Hope is real, it is the architect of our dreams, it engages our Willingness the builder that builds our dreams. With willingness we have momentum and with momentum, we can do magic. Momentum begins well before it can be seen by others, let it rise up, let it carry you up without restriction, let it inspire others to do the same.”

Hope is a plan – don’t let anyone talk you down from this.

Not a great line for a corporate planning session, but a reality nonetheless.
Hope is a plan, sometimes it is the only plan in town. Raw unpolished and primal stuff, but I have learned to not underestimate hope, but instead embrace it, let it rise up, give it life. At the very least ‘Hope’ generates that initial inner momentum that drives vision, purpose, and its outward momentum – I think it is the stuff of magic.

Yes, I think Hope is a credible plan, so don’t let anyone talk you off that life raft -its your hope – your life raft!

I have to adjust my thinking – I have to help them help me, I was once them, I too had no clue as to how to help a person with a certain terminal death sentence

Personal experiences have taught me that the opportunities and rewards within life only emerge when you fully accept and embrace the challenges that come with them. The enormity of a terminal cancer diagnosis completely overpowers this reality – yet it remains a reality, that we each must find a way back to. You have to remain “Open and Willing” despite the pain of the now.

“Anything and everything is always possible as long as I remain open to it. This belief has always allowed my willingness to rise up from deep within, a bright beacon so that ‘opportunity’ and good fortune can always find their way back to me. There have been times when this was all I had left in the tank.”

I am trying hard to grow forward from my experiences in a way that helps others today.

Many do not want to be defined by their circumstances, but they will always be shaped by them. For me it all boils down to this simple observation – “It’s not how much we know or have experienced that counts, it’s what we actually do with what we know that most defines us

These thoughts and words have all formed my story, the background music which began deep within me when I needed it, it helped me sing, it helped me rise above and beyond my conscious measures to become the best I could be, I hope these private words that I have now shared help you find your best beyond the restriction of other people’s perceptions and realities, no matter how well intended.

How I see it

Beyond Conscious Measure

Who gets a second chance let alone a third chance at life? This is my personal story of just that…

In late 2016 I was diagnosed with a terminal and unbeatable cancer with an unpronounceably long name, but the bottom line was Steve you have just 6 months to live… but we may be able to extend that to 18 months with surgery.

One thing you do in this situation is to look for others who had survived such a terrible prediction, something for hope to cling to… there were none…an indescribable feeling of despair. The facts and stats had me dead & buried before my last breath, with an overall average survival of 6.7 months & an 8% 5-year survival rate… Let me tell you there is no manual for this type of stuff, so rightly or wrongly I began creating my own.

I had been unceremoniously culled from the herd at frightening speed, a deafening silence overtook my whole being, my reality, and vision for life had suddenly disappeared. A blur of rapid decisions funneled me into 25 hours of life-threatening surgeries, 22 months of intensive clinical chemotherapy, and immunotherapy trials.

Cholangiocarcinoma (CCA) is a cancer of the bile ducts that interconnects the liver, pancreas, stomach, and everything in between, so a team of 7 surgeons went to work removing a shopping list of organs in an attempt to extend my life. But their attempts were in vain as I quickly (as expected) became metastatic. A metastatic CCA cancer is one of the most hostile of all cancers, with less than a 1% survival rate. My life was now measured in weeks if not days.

This has been an unimaginable roller coaster ride to survive the facts and their stats – people are conditioned around facts and stats, they become the environment and the way, an impossible place for the patient to see through.

I have seen impending death and that line from many angles – I have been over the line and into the jaws of death, only to be pulled back out by skillful surgeons with just seconds to spare if any at all.

So I am still alive and have written my own manual, I am more aware of what I have achieved and how it happened. I am in a position to distill and share with others who may need to attach their hope to something more tangible such as my story – a bridge across the deep cancer abyss.

My journey, challenge, or whatever you want to call it, is certainly a test beyond conscious measure. To survive you have to believe beyond what you can see and feel. When you are faced with absolutely zero conscious options you may understand my words. I had to reach within to reach out. I think sharing has to be one of the greatest of all resources (and gifts) that we humans possess.

This evolved from my lived experiences…
“To Walk on Water, I first had to believe that it was possible, I had to look through the overwhelming noise and facts that defended its impossibility, I had to see through to where it could be possible. This was how mankind made it to the moon, and how I achieved what seemed impossible” That fiction became my reality! “

Not a normal bio – but hey if you have read this far all I can say is I hope it was worth the effort in some way.

See you out there,
Steve
Ps Hope is a plan, so don’t let anyone talk you off that life raft

Raw snippets from my diary

I gave my diary a name -“Chapters of Me” The diary began as a filing cabinet for my thoughts and experiences.

I have to say a lot of my diary entries were entered when I was under severe pressure mentally & physically, I barely had the strength to hold a pen or a phone so getting stuff out of my head and onto paper was more than a challenge, but it was a challenge that distracted and gave me purpose.

Below is a summary of what was a patchwork of notes to myself. It is amazing what the mind can block out to move on, but these notes have proved to be an asset for me – they have kept me centered on what is most important.

Life Happened on me and it did so in a big way

In October 2016, I was out on my normal Saturday morning 40km cycling ride with mates, when I became overwhelmed with tiredness, similar to the onset of a bad flu or virus. One week later (November) I was diagnosed with Cholangiocarcinoma, an unbeatable terminal cancer that gave me just 6 months to live, and no possible curative outcome – it was just a matter of how long I could last. Surgery held a very slim chance, but the stats were not kind to this outcome either.

I remember thinking “Cholangiocarcinoma” – never heard of that cancer, can’t be that bad – hmmm how wrong was I.

My mind fell over its edge, spinning out of control. I landed, but the world had changed.

Thoughts were relentlessly avalanching through my mind, I was stuck in a cancer vortex, and I could not keep my balance, or breathe normally.

Somehow instinctively within my mind, I crouched down to a stable centre of gravity, and then I slowly began to stand. Throughout this, I was actually sitting in the Doctors consultation chair. I remember thinking I have to take that next step, no matter how small or insignificant. Looking back, that gave me some clear air, to look up and around me. The first thing I saw, was Claire looking back at me, tears in her eyes, Claire had just gone through that same vortex.

And so it begins

What lay ahead is simply not digestible to the unprepared mind, there is no manual for this type of event, but focusing on that next step saved me from defeat, it implanted a small sliver of self-control.

Surgery became my first opportunity.

  • I was offered n accepted a Whipple Operation which took 7 surgeons over 12 hours.
  • All up I have now endured 25 hours of life-threatening surgeries, followed by –
  • 22 months of highly intensive chemotherapy and immunotherapy treatments.

This has been an all-engulfing physical, mental, and spiritual challenge, way beyond my comprehension. My vision and my future had been ripped right out of my centre, leaving me numb, and petrified. Self-talk, and coaxing became my very raw and crude method – “Steve – get up, get up, get up – take that next step, and the one beyond that until momentum reaches out and engages me. Momentum is life – keep moving even if it is only within my mind”  – Looking back these words were actually real momentum, they gave me the beginning I needed to make. Essentially this was the beginning of my response to Cancers attack on me.

I wanted to see how others had beaten it. I needed hope that it could be done.

Ok, so here is where it gets very murky and tricky to explain. When I began researching, Claire and I could not find anyone who had succeeded, we were desperate to find anything that gave me hope that I had a chance.

So I now have the opportunity to share parts of my story and my more inner thoughts in the hope that it will help you. I would like to underline that I could see no successful outcome until it was. What is important to understand, is that I continued to keep the lights on and doors open to opportunity despite the stats saying otherwise.

Unfortunately, a Cholangiocarcinoma diagnosis, like Pancreatic, provides very poor results. I strongly believe that a significant factor in changing this will be found within the globally connect patient and it’s up to we patients to share any success.

It all happened in the briefest of moments.

You busted through my front door in the dark of night, you wrestled me to the ground, repeatedly raping me to within seconds of my last breath, ‘Cholangio’ you left me for dead, cold and beaten, but I did not die, I still breathe.

Cholangio you took so much from me, yet you left something behind.

As I struggled for my survival I found something deep within me that you could not see nor reach, my “Unconditional Willingness” was still intact protected within my center. You and your cancer army could not reach what you could not see.

Cholangio you pushed me to my edge but I did not go over. As I clung there with just a finger hold left on life, my mind unexpectedly calmed. From my edge, I could see so much more than I had ever seen before.

Your intentions were clear and brutal, as you skilfully culled me from the herd, but unwittingly you reactivated my instincts and freed my inner vision trapped deep within – I could see again, my “Looking Glass” had returned and could see beyond your grip.

Cholangio I conceded to your unwanted grip, and as you rejoiced in your victory, it loosen for just a moment, but a moment was all I needed to re-engage my effort and slip your deathly grip.

Cholangio I took that next step at speed without hesitation or condition. I continue to move forward with my Willingness’ and ‘Looking Glass’ firmly in hand. I have learned much about statistics and their convenient proof – I have learned the dangers of social and idle convenience that disarm the effort and destroy the truths that lay just beyond the conscious measure.

Cholangio you were an unbeaten beast of cancer, I am aware of your stealth, your shadow, and your grip. I know you and you know me. You know my path and I know yours, I will always know yours so that we always remain in parallel.

Erin – my first trial nurse –

“Steve cancer has taken so much from you, but it can also give back so much more if you allow it!”

Now those few words seemed a challenge too far – they haunted me for another 18 months as I tried to make sense or understand. The big penny drop moment did come and release me from their grip, but that was also a new moment where I could see what I could not before – It underpins my energy and efforts and forced me to confront potentials I did not know I had.

Dr Matthew Burge’s words to me when I agreed to voluntarily remove myself after 15 months of Keytruda infusions.

“There are many that we help a little and some we help a lot, and then there is you.” Go out there and ride your bike and do something special – see you in 3 months”

Make no mistake, Keytruda saved my life at the last minute of the last hour – a true “Hail Mary” pass by Dr. Matthew Burge, but that would be way too simple to leave it there. I had many other significant obstacles to overcome and a good dose of luck before I ever had the opportunity to meet Matt and his team.

Below are personal traits that seemed to have followed me into this cancer challenge – I believed they formed the foundations that got me through many tight spots – and I have been through a few.

Acceptance – I find that acceptance of my current situation helps my mind reset, settle and find away forward – it unlocks me, and allows my willingness to rise up.

Willingness is the stuff of magic and dreams, its a expression of who I am. I think Unconditional Willingness can succeeded over the inert realities of others, it defies logic and transforms fiction to fact.

Writing it all out – I have evolved a habit to empty it all out onto paper, I find that it lightens the load and free’s up my mind. It’s another type of tangible reset that helps me see things for what they are, and allows me to write myself into a better story. Writing gives shape and reality, it gives control and hope.

Fear remained ever-present as I faced a fast-approaching demise, you cannot fully escape or get around this. Distraction and Discipline were my best weapons. My best distraction was writing and dreaming about what I wrote. I learned to be very disciplined in identifying trojan horse gifts.

There were many Trojan Horses
My biggest challenge came from the constant flow of well-intentioned and misguided advice, which triggered avalanches of fear and overwhelm. I became very deliberate on what and who I let in which reduced those horrid rampant fear attacks. Knowing this also gave me a heightened sense of control.

What can be gained from a little definition and understanding?
I am not sure but I humored the idea –

  • Cholangio means the vessel – Bile Duct
  • Carcinoma means cancer of epithelial tissue – the skin that lines the bile duct (Vessel)

Cholangio the Beast was my problem and Guzzba was my solution.

Guzzba a secret made-up word, a bond between Dad and Son, initially to ward off stranger danger. But after a time it became more – a magic word between us, something no one else could know or understand – it had power beyond reality itself. Zach our son was a wanderer and overly trusting. Our daughter Georgia was far more reliable and had no need for such a silly word.

  • Guzz means “Anything that is cool” or Fiction
  • Fiction means formed thought, that creates an imaginary story not yet real
  • Ba means a lot of things, but they are all real –

Guzzba means;
A cool place where fiction finds its pathway to reality over the realities of those who cannot see.

  • “Fiction always proceeds its reality.”  Ask the many who have proved this true – start with the Wright Bro’s or Neil Armstrong, and of course Dr. James Allison.
  • As I have told myself on the many occasions of high pain and dwindling energy – “Steve get out of the way and let the fiction run, let it find its reality!
  • Guzzba is my magic “Alice in Wonderland” place where I can pursue really cool ideas and discover the pathway to their reality – little did I know cancer would become a feature to test my resolve.

As a side note
Survival really needs creativity to rise above and succeed

Chapters of Me was created as a place for me to put things – thoughts, memories, and experiences. I needed to lighten the load and give my mind the best chance of dealing with a massive challenge that was beyond my normal conscious capacity. Chapters of Me was a fast filing system, it didn’t have to make sense, I just needed to know I could find it at a later date. It worked, it reduced my overwhelm, and it gave me a toe hold and a sense of control. Continue to Chapters of Me

It was a huge shock to discover my own mortality. When the fatal like news was delivered to my ears, I instantly spiralled down into a deep dark cloud disorientated and confused beyond anything I had ever experienced. What was very odd, was I spiralled down and hit bottom and seemingly bounced momentarily back up and out of this dark place. A moment of clarity followed, as if all my remaining reserves of energy, had suddenly leapt to my defence surging to my frontal lobe – a “Matrix” type moment and a brief oasis of blue sky. In that moment I simplified and galvanised my thinking with ease, I focused if not promised myself that I will always take that next step no matter how hard, small or insignificant it may seem at the time. I developed a saying to remind me of this; “Take that next step and the one beyond that until momentum reaches out and embraces lifting me up and beyond today’s realities”…Continue Reading My Walk with Cholangio the Beast

Targeted Knowledge

Molecular / Genomic profile

Matt (Dr. Matthew Burge) suggested I read the book called “The Gene.” Matt said to me that it would be difficult reading, and it was at first, but as I continued to lean into it I began to see the patterns and it all began to fall into. What also helped me was my current experience with my immunotherapy treatments.

The Gene taught me the significance of knowing my biomarkers and the mutations driving the cancer growth – Mutations really do Matter, I am proof of this. Mutations are simply mistakes that occur in our DNA replication. If you are reading this as a fellow patient, ensure that your medical team has an IHC test and or a Molecular Profile completed on your biopsy. Please do not assume that they will automatically or willingly have this done on your behalf – that what be a mistake.

I feel a strong sense of responsibility to stand at the edge of that cancer abyss on my terms. To stand firm on that thin ledge and help pull other cancer warriors back up to the safety of solid ground. I have been both very unlucky and very lucky – I have learned from both, it should be shared.

You have to first pull yourself up and take that next step to rise above the pain of the ‘Now.’ You need to aspire to become the best patient you can possibly be. You have to help those who are helping you. Reward them with your inspiration so that they may do the same and rise above their best.

In order to achieve these lofty expectations you have to open up yourself up and engage, this will lift you it will lift them – it lifted me.

Good luck
Steve

Living life is most definitely in the eyes of its beholder, but it sure feels really really good, when we are all on the same song sheet, and fully in sync with the opportunity we have.

Letting it all out like a tweety bird in spring