how tough or smart

A well worded intro ?

I would describe myself as the classic modern day ‘Active Lifestyler’ which really means I am over 50 and clinging to my diminishing youth. I am an ‘Active lifestyler’ by bike and foot. Yes I love to cycle and run almost everyday, which includes the all important coffee sessions that follow. The Gold Coast has an amazing work life fusion baked into its culture. The Goldie is increasingly seeing an influx of more and more “Thought Leaders” and “Professionals who are detaching from their congested and limiting city environments in exchange for a technology savvy “Bay type” environment, it just keeps getting better.

Cholangiocarcinoma

Terminal Cancer: A deadly  Liver/Pancreatic combo, my story; “Cholangio the Beast”
No Cure and No Survivors in this deal, average survival period 6.8 months.
I have survived several Significant life threatening surgeries which total nearly 25 hours on the operating table, and weeks in ICU. A shopping list of body parts removed; Stomach 80%, Duodenum 100%, Bile Duct 95%, 2 Lymph Nodes, Pancreas top 33%, Gallbladder 100%. I also had my main Hepatic Artery terminated during significant Aneurysm event. I not sure how I survived that one, it was so swift, losing over half my blood in about 30 seconds. It came down to seconds! It was so brutal and bloody hard to recover from especially as I was still trying hard to recover from from earlier surgeries.
How am I still typing this? Keytruda;  I am one of 9 world wide currently on the experimental immunotherapy Keynote trial 158.
Only 13 Patients world wide qualified to participate over two trials. Two patients have succeeded, I am one. There is also a maverick in the mix with “Matt Reidy” not qualifying and taking the beast on privately – Matt won! Matt from Virginia USA is now a good mate, we make up a club of 3 who have been snatched from the jaws of certain death.

Other Passions

My daily Tip and Tail is more than a passion, hmmm maybe it’s my religion? A special opportunity twice a day to live and experience the opportunity of life.
The ‘Tip’ is my ocean swim at day break and a coffee fix that only tastes that good if you have been immersed in the salt!
The ‘Tail’ a Sun Setting Wine to show respect to the day thats been and take in the unique Gold Coast light transformation over the ocean and Broadwater – simply stunning and inspirational. A time of day that breeds and feeds my aspirations.
Unique Food and Wine experiences, good friends and new friends. Musically I am a little stuck on the 80’s, but I do have a very wide range of taste and style.
Trends and Transformations make for interesting reading and observation, its so uplifting to stay connected to this evolutionary kaleidoscope.
Rugby, Cycling, Running and Walking are always in the mix.

Family

Born; Waikanae NZ
Live in Main Beach Gold Coast Australia since 2005
Married Claire January 1989 in Waikanae.
Daughter Georgia (b: 1994) Educated Thomas Kennedy Junior Academy (NZ) + St Hilda’s (Gold Coast) + MBA via QUT (Brisbane) Georgia works in a Clinical Management roll for Babylon Health in London UK. Georgia is currently in the process of taking up a new position to Vancouver to establish the Canadian footprint. Babylon is rolling out a new wave of health innovation with shareholder/partner Google and is aimed at healthcare services delivered by an “App” platform between Patient and Doctor. As I write Georgia is looking to take up a new position with Babylon expanding it’s footprint into the Canadian market.
Son Zach (b: 1990) – Educated Thomas Kennedy Junior Academy (NZ) + TSS (Gold Coast) + MBA via Bond University (Gold Coast) also Bentley university Boston USA. Zach is currently Managing Director and CEO of an International Business Head Quartered in London UK. He specialises in large Business Turnarounds and Carve-Outs. Zach cut his teeth primarily through a very successful career with Deloitte Australia where he also qualified as a CA Accountant and held the position of senior manager in their “Turnaround Division” up until 2016 before taking up new offers from a European Venture Capital fund who were looking for his type of expertise.

Extracts from a recent interview

What do you do Steve ?

I develop Villager styled Business Communities.
Highly Purposed, Defined and Motivated Village Environments within a wider community.

How do you achieve this ?

1. Pull everything to a centre, sift it, declutter and simplify.
   We help find and connect the dots that define a Village.
   Centralising and Connecting the Village Experiences and Villagers who Advocate and Influence them – A powerful force to feed any business model.
2. Unlock the Villager, their Dream & their Village Story.
   We help define the Village Experience.
   Identify their Needs and Aspirations, unlocking motivations that define the Village experiences and opportunities. We then Repurpose, Repackage, Re-connect and Re-establish their relevance.
3. Information Flows
   We help share the Village Experience.
   A vibrant Village and Villager information flow is everything, it feeds the need of like mined people who consume, share, play and advocate, the same space.

What is unique about your Contribution Steve?

I love the interaction and ambience of motivated people – Vibrant Villagers you could say. I am very good at joining the dots and seeing beyond the current tangible, to what could be.

Steve describe your Ideal Client or opportunity profile

Any unloved and dysfunctional Business styled Community that has an underlying financial flow, that will be realised by introducing our Village (r) Model.

Any individual business who needs to develop a specifically tailored Villager environment around their model.

Bugger me days, is this my CV!

The People who I will  Thank every day of my life!

Belspalsy

Anaphylactic Shock (Prawns)

Diverticulitis

Broken Neck

Gall Bladder Disintegration

Cholangiocarcinoma – It’s terminal Cancer

Aneurysm Emergency – Hepatic Artery

Terminal, Terminal Cancer

Articles | Reference

My Walk with Cholangio the Beast

My Cancer fact sheet

Cholangiocarcinoma.com.au

It does seem that some of us have to pull more than one turn at the front! – a little Cycling speak to distract me.

2003 Belspalsy

A very scary stroke like event that saw me remove myself from the public eye for just on 4 months. Fortunately I made a dynamic and full recovery and no longer looked like a dribbling monster who couldn’t talk.

2006 Anaphylactic Shock

The Wild Prawn that struck me from behind
I love prawns who doesn’t ? I ate the whole prawn and savoured every opportunity, but it seemed I was to have one prawn to many as my body was invaded rapidly with welts, then swollen eyes, then my throat swelling and shut down my airway – I collapsed in front of a doctor who gave me a shot of his adrenaline and brought me back to the land of the living.

Fair Dinkum Mate it’s as True as a Roo’s tale

2012: I Broke my neck seriously in the GC100 Cycle Event – I was suddenly paralysed for 8 months…but…
2013: My first ride after breaking my neck, in the pitch black of a 5:30am ride on the Gold Coast, I get to take my first turn at the front of our group of 6 riders, it felt great to be back! And then fate intervened again, before I had time to settle in I  was hit head on by a bloody big Roo, – go figure those odds! Yet luck was on my shoulder, with an angry Roo entangled on my front wheel and sprawled over my handlebars our heads clashed eye ball to eye ball in the dark for the briefest of moments before his (or her?) tail slammed into the ground and in one big bounce disappeared into the dark tree line. Even though I was in shock, I could sense the panic from all behind me – I think their panic was of disbelief and fear of a re-broken neck, along with who was going to tell my wife!  I walked a way with black eye a busted bike and a bloody big Roo Story! Roo = Kangaroo !

2015 Dec: Gall Bladder Disintegrates

My Gall Bladder completely disintegrated creating an extreme pain event. I was quickly transported by ambulance to the University Hospital in the middle of the night.Morphine was unable to shut down the pain, and I passed out several times just from the sheer intensity. I had an emergency 5 hour surgery to remove and clean it all out. A biopsy later revealed no cancer and no underlying cause could be tied for this event

2016 November: Cancer Diagnosis

A New Chapter began
Cholangiocarcinoma (CC) is a cancer in the bile duct – A  Liver and Pancreatic cancer combo.
My story –“My Walk with ‘Cholangio the Beast’

‘ECRP’: 2hr – Stent to restore flow and extract a biopsy from a tumor in the Bile duct just below the liver.

2016 December 8th: Major Cancer Operation

‘Full Whipple’ Surgery: 1.5 hrs pre-op + 10hrs operation by a 7 surgeon team. to remove a  80% Stomach, 100% Duodenum, 95% Bile Duct, 2 Lymph Nodes, Head of my Pancreas (1/3 Pancreas)

2017 January 5th: Aneurysm Emergency Operation

It all came down to just seconds between life and death.
While recovering at home from the Whipple surgery, it came on very fast, I fell unconscious and began vomiting up blood. Once again the Ambulance is called and they are on a mercy dash to get me into surgery. The Operation took 4.5hrs and was completed by a very skilled Interventional Radiology Surgeon Tom Snow and his team.

‘An aneurysm of the Main Hepatic Artery is typically fatal, it is a sizeable breach of the Artery wall and blood loss internally is very fast. The Hepatic artery is responsible for 30+% of the Livers blood supply.

This event was a direct complication of my Whipple Operation.

If not for Claire’s cool head and decisive actions I would not have survived for the ambulance crews arrival. Yes luck was on my shoulder once again in the form of Dr Tom Snow who just happened to be on the hospital grounds when I most needed a good break.

2017 February: Chemotherapy: The Hamburg Trial

Chemo and Radiation do not work on this Cancer, but a new trial opportunity offered some hope.
A very oppressive weekly regime of 5 -6 hour infusions of a potent combination Chemotherapy. These were 12 hr days that included bloods, tests, Oncology meetings, before the infusions began.

This really was a bloody tough gig, 6 months of hellish darkness, it was very Intensive & Debilitating, it stripped me bare – digging deep is an understatement I went well below my conscious zero point for survival. And to rub insult into injury Chemo failed me – it didn’t work, in fact it failed me spectacularly. It was July and I was slipping out the back door at rapidly. I now have multiple Liver Tumor Metastasise occurring, including multiple Cancerous Nodules throughout my lungs. Breathing had suddenly become my next big challenge with relentlessly increasing tumour pain.

2017 July: Terminally, Terminal & a Hail Mary Pass by Merck

August delivered the Merck “Hail Mary Pass” that I had to catch – I was now down to weeks if not days.
I caught it, and I am still alive with no – yes thats NO tumours. I went from riddled to none so hard to believe this is my story.

WOW my Oncologist  Cycles too
The Matt Factor

Dr Matthew Burge
My NEW best friend for life (although Matt doesn’t yet know this!)  Matt had my wheel (Cyclists terminology) and he was ready to tow me up and over an even steeper climb for my survival. Matt happened to be also heading up an immunotherapy trial with Merck in California. This was now my last throw of the dice and only chance of survival, albeit a very slim chance.
What a guy . . . Matt loves Cycling and as it turned out pretty handy at saving lives, not a bad guy to have on your wheel!

The Outlook

A very very slim chance of a cure exists through a major surgery called a Whipple, but literally only a handful over the years have slipped the noose and continue to survive.

Typical life expectancy rates fall into two groupings

1. 6.8 months – Extrahepatic (My diagnosis)
2. 13.2 months – Intrahepatic

Currently no cure exists – As a gauge to compare;

• Breast Cancer has an average survival rate of 98% and
• Prostate has an average survival rate of 99%

Keynote trial 158 progress

Immunotherapy is a modern day breakthrough a penicillin moment in the history of cancer. For the first time in Medical history that the word ‘Cure’ is being referred to with Cancer, but of course it is still very early days and I still have to do my bit by continuing to walk and talk over top of the dismal and dire stats that surround Cholangiocarcinoma outcomes – I need to stick around to make change and inject hope.

My trial response to date.

1. 9 Patients Qualified globally – I am one of the 9
2. I achieved an immediate “Complete Full Response” that means all my tumours were eliminated.
3. 18 months on and I am now referred to as “Persistent and Ongoing Full Response”.
4. Over 4.5 Years 2 trials have been conducted, Keynote Trial 028 in 2014 – 4 patients with one complete response and Keynote Trial 158 – 2016 – 9 patients with one complete response.
5. Two patient participants over 2 trials and 4.5 years, have succeeded. Note there is also another patient Matt Reidy from Virginia USA who privately funded a successful outcome. Matt is now 2 years post Keytruda infusions, we had the opportunity to meet in person in Salt lake City courtesy of CCF Matt and I keep in regular contact and have struck up a very good friendship.

Simplification is Complicated, it is my biggest challenge in life.

Relevance and Contribution Values are the prize of finding my simplicity, it brings everything into alignment providing clarity of Vision and Direction. Simplification unlocked my Willingness and unleashed a momentum from within, radiating outward through my aura as it searched for its reality.

Momentum is life – Life is a Magic Trick!

Taking that next step and the one after that without condition or proof is the magic within momentum. I learn’t to do this no matter how small or insignificant the step, I did this until momentum embraced, lifting me up and beyond the now, to a place where my dreams and visions could breathe and become real. With Vision and Momentum is with life, without them is without life.

Pillars of Character

Unrealistic: Being a little unrealistic often, feeds my dreams and defines my vision – it frees the intangible, builds energy and creates new realities not yet realised.

The Looking Glass: The awareness of its existence allows me to transcend beyond, to a place where aspirations and dreams can find the seeds to their tangibility.

Willingness: Unconditional ‘Willingness’ keeps my mind aware, receptive, energised and alive.

Momentum: Momentum is always in the next step, it is Life in itself, it is Magic

Simplicity: The prize that brings everything into alignment.

Relevance: Is embedded within my continual awareness it is in a constant state of evolvution.

Pillars of Action

Do one thing at a time

Be remarkable @ it

Be Resourceful with it

Add Value to it or don’t do it

Surround it with talented people that can make it reality.

How I Simplified and arrived at these Pillars

Living Life in the Terminal Lane

‘Cholangio the Beast,’ Cancers Champion Programmed Death Warrior, who leaves no survivors in its wake, made my broken neck look like child’s play!
25 hours of surgeries, months of intensive chemo and now immunotherapy, I have recently gained the upper hand over a statistcally unsurvivable Cancer.
A Pancreatic / Liver Combo with no cure and no survivors

Living life in the Terminal Lane has taught me much, especially to “Live Lite – Eat Lite – Move Lite & Play Lite” ! Everyday I run, cycle, Swim in the surf, and let out the real smiles. I am no longer the loneliest person in a crowed room and absolutely love the feeling of being normal, it’s so simple but it’s the best thing ever!

An Edgy New Vision

I was pushed to my edge, but I did not go over. Out on the edge is scary stuff, but a new reality emerged, I could now see so much more than I had ever seen from the crowed centre which I had just come from.

I love that I can have a vision with all the anticipation and uncertainty that goes with it. Having something to look forward to drives me, it gives me Purpose and Direction. I’d say that’s a good enough reason to stay top side, for a while longer.
The gain from the Pain of ‘Living’ far outweighs the Pain of Dying and it is an understanding worth living for every day.

I understood that I could not waste precious energy trying to go back to the way it was, my energy was more effective in learning to travel alongside this beast of a cancer. Cancer could not remain my a foe, but instead a new partner on a new pathway with new sunrises. I could not risk a head on confrontation against a foe I did not know or understand.

Bugger the Bucket

The bucket list was never on my agenda. My thoughts were that if I dipped into that bucket, then it is all over Red Rover for me.
I have never pictured what a bucket list would look like for me, so I guess it was easy to push this popular ideal to the sideline and keep my willingness undaunted. I retained my “Willingness” – an unconditional Willingness.  It was all I had left in the tank.

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 breath.

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 centre. 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, you loosened your grip for just a moment, but a moment was all I needed, I re-engage and slipped your grip and the awaiting noose.

Cholangio I took that next step at speed without hesitation or condition. I continue to move forward with my Willingness’ and ‘Looking Glass’ in hand. I am not limited  or daunted by the convenience of proof. Yes I have learn’t that proof is born from within the Looking Glass. I know the dangers of an idle and convenient proof that can so easily disarm the pursuit of perfection.

Cholangio I am aware of your stealth, your shadow and your grip. I know you and you know me.

I know your path, you know mine, I will always see your path, so that our paths remain as parallel.
Steve

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”

I write all this for me with Claire my Children in mind.

Writing helps me get over myself and to deal with the serious stuff. Writing it out of my head gives me a strong sense of control, it lets in powerful streams of sunshine that warm and inspire, lifting me above and beyond todays realities. There is nothing better, than a mind filled with aspirations.

I share my thoughts and journeys in the hope that it will somehow lift others back up to solid ground and beyond, to reach and touch their potentials and share their successes with those who follow.

There you have it – an insight in to my thinking style !
Cheers Steve

Thoughts are Things – they evolve to find their tangible form.

“There is an ‘Art’ to living and there is a greater ‘Art’ to staying alive, yet the ‘Art’ of all ‘Arts’ is to live a full and complete life that exceeds your conscious potential, but never quite hits perfection, as that is the inspiration for tomorrows sunrise!

Pursuing Perfection confronts potential, opens up honestly, and delivers opportunities – It maintains a healthy direction. It can be scary, liberating and overwhelming, all at the same time.

An irony of life is that the pursuit of perfection exposes the intangible for what it really is, “a new tangible – a new power,  just waiting to be acknowledged. This realisation came to me from deep within, as I struggled to reach out not just for survival, but beyond that. I discovered an unconditional willingness at my centre when all else seemed lost it lifted me up, transcending beyond limitations of the crowd”  Survival is a crowed centre – Living has space and freedom for the pursuit of the intangible.”

Thought Hacking myself became a critical pathway to survival.

The thought of getting back up when you are fully paralysed and frozen by fear, is another fear in itself. To overcome this I had to displace the building fears with greater distracting thoughts that transported me beyond myself in that moment. I know attitude is not the cure all, but I understood that how I thought upon myself and my environment was a critical factor in finding a pathway to my survival and beyond. The words “beyond survival” were very important to me, I needed to overshoot the survival line, and not fall short.

Thoughts are Things, Powerful Things

All I had left was my thoughts and thinking, I quickly came to realise that this was still a resource, something within me that I still had total control over. Thinking this way immediately gave me back a sense of control and some much needed sanity, it lifted me up and beyond the overwhelming ugly realities and gave me a sense of future. This was significant.

An obscure personality trait became a major strength and source of control; “Being a little unrealistic often” fed my dreams, my visions and my purpose, it allowed me to look past the shocking statistics and their ever oppressing realities. It released a magic and gave me the stuff of dreams…continue reading

Sometimes you reach a point in life when the only course of action left is to dump it, and dump it hard and fast!

Now I am really digging in deep,  but someone had to do it, and it could only be me!

If you have been going at it for a long time and it ain’t working out on many levels or it just seems to keep unraveling, loosing the winning edge, then bluntly begin to EMPTY it all out, write it out of your head and onto paper. The answer will almost certainly spill out onto the paper in front of you but if not it is definitely there waiting to be rediscovered, it may just take some re shuffling into fresh chapters. I have to emphasis that you need a physical space to dump it all, otherwise you are likely throw the baby out with the bath water!

Not you ? Really ?
If you find your mind constantly yearning for what almost certainly will never materialise, or that your tight belt is affecting your attention to other matters of your day. Maybe everything just seems constantly out of sync . . . then thats a great sign you need to “Pause and Listen to yourself,” Slow Down and Stop. Bluntly an “Empty Out” could be a life saving reset on many levels.

Avalanches
For me life unleashed a series of avalanches I didn’t, or could’t see coming. Life as I knew it came to a dramatic STOP on more than one occasion. Avalanches are all consuming, but I realised that I could still think and attempt to make my own choices. However this awareness exposed a new problem – I had an overwhelming amount of “Thought Garbage” clogging the pursuit of clarity.  Hmmm something needed to be done quickly, otherwise it was curtains for me. I needed to regain clarity and focus, and regain my thinking freedom if I was to overcome an enormous cancer diagnosis.

I began a big dumping of all my “Thoughts”
I created some folders on my Evernote iphone App and some basic “Chapters of Me” to house it all,  and I just began a full on indiscriminate dumping.

It took many go’s and it was exhausting but it felt good, the getting started was the hardest part, after that it flowed out faster than I could type.

Once it was done, I let it settle and just “be” then after a couple of days I revisited the scene of the crime, and just picked out a chapter and began to play with its contents. This was the beginning of multiple upon multiple revisits, revisions and simplifications, I did this chapter by chapter, creating new chapters and sub chapter in the pursuit of a more simplified “Steve” and gained control of my ‘Thought and Thinking’ processor upstairs. I remained disciplined along the way and continued discarding unnecessary junk. I also created “Archived Folders” just in case I got to carried away.

As I moved through each chapter a clearer picture emerged, I began to see my Relevance and Contribution Values. I had initiated a fresh momentum as chapter after the next was ticked off, allowing small rays of sunshine to stream in and nourish my willingness. This new mental momentum gave me a sense of achievement and control, I could feel, smell and touch a new direction as it unfolded chapter by chapter. I had a pathway once again.

I had unwittingly “Centralised Me” I had pulled all the fragmented and disenfranchised pieces and resources of ‘Me’ into a centre, recreating and redefining the picture of ‘Me.’ Pathways become real once again.

It is evolutionary to empty out, re-examine, redefine and go again.