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.  Living on the Gold Coast is a pretty  cool lifestyle to  play and work in which means I am out cycling, running or ocean swimming at around 5am most days and then back for a coffee to kick off the next part of my day.

My 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 Vancouver establishing 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.
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 Managing Director 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.

Evolution is Lemons to Lemonade

I think the essence of Evolution is when hits, you find a way to accept and embrace, and then find a way to re-engage.

Connected: Whether I liked it or not I became infused into the serious world of Cancer, so it made perfect sense to keep my enemy close and align my /our combined skills, knowledge, experiences and purpose to become part of the cure equation.

An unexpected responsibility: I am one of  just 4 people globally to survive a metastatic stage 4 Cholangiocarcinoma via immunotherapy (Keytruda). There are many others like me that desperately need the help and support to get back up to solid ground. I have something significant to offer.

Cancer Sticks: A serious cancer diagnosis is such a bloody big thing to get your head around, it strips you bare and robs your certainty from deep deep within. People around you just don’t seem to get that! … they cannot see or comprehend this invisible loss, which just adds more pressure when navigating the treacherously dark shadows ahead. Survivor guilt is yet another hidden trap awaiting the unsuspecting  – I understand this very well!

The new penicillin

I have not only witnessed but have also become and integral part of a significant step change in medical history, forever embedded within Immunology. My success in the metastatic patient setting underpins a change in stage 4 terminal cancer diagnosis survival – a modern day penicillin moment in history. (I am just one of 3 Metastatic Cholangiocarcinoma patients to achieve this globally)  This has become one of the classic Lemons to Lemonade transitions with immunotherapy and its substantial impacts only in its infancy.

The Globally Connected Patient and Caregiver, (GPCP) provides a continual and real time summary of what is working and what is not. The trial of all trials is now accessible and transparent across the globe 24/7/

What didn’t happen when I was diagnosed
No priority or what next guide was given nor recommended. To this day I have never seen one anywhere across the globe. You will probably jump to a conclusion that I must be incorrect. There is no centralised tool kit of priorities at the patients fingertips upon diagnosis, if you do know of such a resource please, please send it to me steve@stevehomes.net.au –

So we created a Tool Kit Series! Claire and I have searched for 2 years and found zero, so we created it ourselves. We placed the “Newly Diagnosed Patient and Caregiver” at the centre of an impacted community of family, friends and colleagues who also need to make important decisions and initiate actions.

We Simplify and Deliver highly targeted information packages to the Newly Diagnosed Patient and their impacted community

Current

Immunology – the Patient the community and surviving the facts.

Immunotherapy Awareness. Equipping and Empowering the Newly Diagnosed Cancer Patient and their impacted community

2017 – Present

1. The Cancer Tool Kit Series
2. CCA Australasia
3. Destination Main Beach 

Other Active Lifestyle Communities

2010 – present

• Active Lifestyler Villages
• Cycleevents.com
• Ridegoldcoast.com
• Teddervillage.com
• BENnet Professional

PAST BUSINESS

2000 – 2010

• Commercial Property:
• Development
• Investment
• Specialist: (1) Suburban Hotels – Hospo -Light retail. (2) Light Industrial / Retail Mixed Precinct developments

1986 to 2000:

• Residential Property
• Developments
• Investments
• Specialist in: (1) “Non Village” Executive Retirement – (2) Enclaved and Medium density, freestanding Developments.

Happen on Life or Life will Happen on you

With that said life certainly happened on me in a big way. A significant life altering Cancer battle made the drama of being paralysed from a broken neck pale into insignificance.

Enduring and Surviving has reshaped me and my future in ways that I could never have foreseen. I now have a new opportunity to “Happen of Life’ once again

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 !

Cholangiocarcinoma

Detail links

CCA Australasia interview
My Cancer Wrap Sheet – Diagnosis to NED 

‘Cholangio the Beast’ happened on ME!
An unbeaten Terminal Cancer Gladiator – A cancer at any stage of discovery that is terminal.

• No Cure
• No Early detection process

Prognosis

• Untreated 6 Months.
• Treated: 6 months – 6 months – 2 years
• 5 Year 8 – 10%
• Metastatic 0 to 1%

What is Cholangiocarcinoma?

A cancer of  the Bile Ducts connects

• Liver
• Gallbladder,
• Stomach,
• Pancreas
• Duodenum

So where to next ?

Nearly 25 hours of life threatening surgeries awaited an unsuspecting Steve!

All this for someone who couldn’t look at a needle let alone blood and the idea of any surgery.

2016 November: A Cancer Diagnosis

• The Entree Op: ‘ECRP’: – A small op ( 2- 3 hrs) that inserts a camera and surgical investigation that can carry out “stent implanting” and restore bile flow, also extracting a biopsy from the suspected tumor.

2016 December 8th: Gold Coast University Hospital.
A Full ‘Whipple’ Operation – 11 hrs operation, Harald Puhala and his team of 7 surgeons that removed

• Gallbladder
• 80% Stomach,
• 100% Duodenum,
• 95% Bile Duct,
• 2 Lymph Nodes,
• Head of  Pancreas (33%)

2017 January 5th: Aneurysm Emergency Operation –
My life was now being measured in minutes if not seconds.
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. While being contained and assessed in emergency I lost more than half my blood in about 3o seconds.  Interventional Radiology Surgeon Tom Snow saved my life that night in a 5 hour operation which ended up terminating the artery which is responsible for 30% of the Livers blood supply. This event was a direct complication of my ‘Whipple’ Operation, just 30 days earlier. 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.

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.

An ‘Unconditional Willingness’ that was untainted and without need of proof was all I had left in my tank. 

An Edgy New Vision

The ‘Pain of Living’ is far more enjoyable than the pain of dying. Both have been determined teachers.

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 quickly learned that I had precious little energy left, and  it was more effective to travel alongside this beast of a cancer. I had to eliminate the thought that Cancer was my foe, instead it was my new partner on a new pathway to new sunrises. I could not risk an energy sapping head to head confrontation with a powerful foe that I did not know or understand.”

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”

Living Life in the Terminal Lane

Much has been learnt, forged in fire between the hammer and the anvil
Live Lite is an everyday thing!

• Eat Lite
• Move Lite
• Play Lite !
• And Smile like the Sun

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

24.5 HOURS OF SURGERIES & 2 CLINICAL TRIALS LATER

10.5 hours of Whipple surgery followed by an emergency 5 hr intervention (aneurysm) losing in excess of 50 % of my blood in 30 seconds and within seconds of death. All this in just one month seemed a bridge too far at the time.

What would I do different knowing what I know now?

Before committing to ANYTHING, I would get a biopsy and have a simple IHC test to establish an MSI- High and PD-L1 status. Although at the time I had never heard of any of this – I do now! I was MSi-high and PD-L1 positive which meant I could have avoided ALL those dangerous life threatening surgeries followed by Chemotherapies – that is what my rear vision mirror has revealed.

What I think I did well…

I retained an unconditional willingness to keep getting back up, despite the absence of proof. Making the next step no matter how small, became the obsession.

A net gain

I retained an unconditional willingness to keep getting back up, despite the absence of proof. Making the next step no matter how small, became the obsession. Also I would have to underline that I stuck with the science and eliminated EVERYTHING that is or was proclaimed as healthy -that meant no health shop, shopping from me. When I sat in front of my trial nurse for my regular debriefs there was nothing to add – no supplements, probiotics, microbio booster or THC /CBD – absolutely zippo, I followed the expertise and the science exactly.

The Pathways of my Life started so simply

I just complicated it all from there.

Who could plan for losing so so badly? Many laugh at such scenarios . . . The stuff of movies and comedy not for real life . . . don’t laugh too loud about such folly, I have experienced it all. I was prepared or so I thought !

For richer for poorer, in sickness and in health. The world is my oyster  . . . It could never happen to me! and it’s not just about me its has a much much wider impact!

What did I do wrong? absolutely NOTHING, this could happen to anyone anytime. You can never prepare to avoid such a series of events, the trick seems to be in the recovery which seems so unlikely in times of extreme pain! We are all equipped with an internal  “freedom of choice” to try or not to try, truly a very powerful resource within which is at our disposal until our last breath.

Who could plan or foresee successes that I have experienced. Successes that have risen up from seemingly nowhere, born only from a willingness to keep trying without the comforts of any proof. Winning Lotto doesn’t even come close in any comparisons.

A roller coaster of events outside my control have decided my direction in life and the events have played out to a very sweet and very sour unknown script.

1989 Claire and I were married and what seemed not to long after that, my Dad Dennis very unexpectedly suffered a massive heart attack at the age of 52 and dropped dead right in front of my brother and I, at an evening cricket training session – Dad was the team coach.

2002 I win a brand new $50,000 Land Rover 4 wheel drive vehicle.

2008 I was given unexpectedly a 7 metre Italian motor home – $180,000.

2012 Broken Neck – During a cycling Event and in the lead group 30 kms into a 100km race, a large crash – I am now paralysed down one side in a ditch at the side of a country road.

2012 Financial Disaster strikes just two days into my broken neck drama – totally immobilised in a hospital neuro ward, the long treacherous arm of the GFC reached out and took down my business, I lost our family home and all financial resources, leaving us almost entirely broke. I was helpless and unable to move or respond to anything, this was heartbreaking and so so devastating.

2013 Broken Neck – 9 months later I fully recover-
2013  As true as a Roo’s Tale: In the pitch black of a 5:30am morning – My first recovery ride back with my cycling buddies after seriously breaking my neck 9 months earlier in a cycling race. We were heading up to a favourite Gold Coast Climb, then whammo a Kangaroo flashes out of the tree line and collided with me head on – the Roo and me eyeball to eye ball in the pitch black with a big semi heading straight at us in the opposite direction – the result ! – a busted bike, a black eye, followed by a lot of nervous exhaled laughs of relief from those behind me once they realised that I had not re-broken my neck.

2014 my younger brother Graeme RIP falls to Cholangiocarcinoma.

2014 Claire wins the grand tour prize to the “Tour Down Under” –  the world’s UCI Cycling tour opener in Adelaide Australia. An all expenses paid 8 day experience with the tour sponsor and pro cycling elite, worth several thousands of dollars.

2015 My Gallbladder disintegrates creating unbelievable pain, a medical emergency and 5 hour operation.

2016 I receive the exact same Cholangiocarcinoma diagnosis as my brother Graeme, that had me descending at a dizzying speed.

2017 (January) An aneurysm to end it all very quickly, but another stroke of  very good luck the right surgeon (Tom Snow) in the right place at the right time – with only seconds to spare Tom was available to save my life.

2017 (July) I was down to weeks if not days to live. Then came more luck in the form of a Dr Matthew Burge and a “Hail Mary Pass” from Keytruda – only a tiny subgroup of 9 people made it on to a global Keynote trial. I was the only one to respond fully and immediately.

2018 Claire wins the same amazing “Tour Down Under” 2019 grand prize yet again,

2018 The Cholangiocarcinoma Foundation advised me that I had been awarded one of their 3 full scholarship positions to attend the Salt Lake City for the Annual Foundation Conference in Feb 2019.

A very weird normal rhythm to life from a young age.

I have experienced and learnt much in life, many many things that most would struggle to believe as true, yet I haven’t even mentioned my black eye and busted bike as a result of a head on crash with a Kangaroo. This happened on my very first group recovery ride just 10 months after breaking my neck.

Pain and pleasure have been significant and determined teachers, essentially gifting me uniquely powerful insights, and Wisdoms in life.
I truly have been forged in fire between the Hammer and the anvil.

Links

My Cancer Diary/Story

My Cancer Fact Sheet

The People who saved me

Patient Knowledge Hub

Cancer Tool Kits

Newly Diagnosed Intro Pack

Unenviable History

• Belspalsy – 2002
• Anaphylactic Shock (Prawns) 2008
• Diverticulitis 2010
• Broken Neck 2012
• Gall Bladder Disintegration 2015
• Terminal Cancer 2016
• Aneurysm of Hepatic Artery 2017
• Terminal, Terminal Cancer 2017

History Brief

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 !

But wait there’s More

A total of 25 hours of life threatening surgeries awaited an unsuspecting Steve!

2015 Dec: Gall Bladder Disintegrates
My Gall Bladder completely disintegrated creating an extreme pain event. A fast ambo trip and an emergency 5 hour surgery to remove and clean it all out. The biopsy was clear of cancer.

2016 November: Cancer Diagnosis
Cancer
Cholangiocarcinoma (CC) is a cancer within the bile ducts connecting the Liver, Stomach and Pancreas

• ‘ECRP’: 2hr op to insert a  “stent” and restore bile flow, also extracting a biopsy from the suspected tumor.

2016 December 8th: Gold Coast University Hospital.
Major Cancer Operation
‘Full Whipple’ Operation
11 hrs operation, 7 surgeons removing

• 80% Stomach,
• 100% Duodenum,
• 95% Bile Duct,
• 2 Lymph Nodes,
• Head of  Pancreas (33%)

2017 January 5th: Gold Coast University Hospital.
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. While being contained and assessed in emergency I lost more than half my blood in about 3o seconds.  Interventional Radiology Surgeon Tom Snow saved my life that night in a 5 hour operation which ended up terminating the artery which is responsible for 30% of the Livers blood supply. This event was a direct complication of my ‘Whipple’ Operation, just 30 days earlier. 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 
Dr Mathew Burge: Royal Brisbane and Womens Hospital 
A very oppressive weekly regime of 6 hour infusion sessions delivering a potent combination of Gem/Cis directly into my veins. A new regime of 12 hours every Tuesday for 6 months.

Chemo and particularly this mix 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 – Nearly all over Red Rover!
August: I was rushed onto to Keynote trial 158 so that Merck could throw me a “Hail Mary Pass” a last ditch effort, I now weeks if not days to live.
WOW, I caught it, and I am still alive,  just 10 weeks after my first infusion –  NO tumours evident, all gone!. So hard to explain this part . . . Just days before the first infusion the tumour growth continued its rampant and very painful invasion across the top of my liver under my ribs and lay down multiple cancer nodules throughout my lungs – breathing was painful and difficult.

Dr Matthew Burge

From Chemo climb to the Immuno Climb.
A very humble Oncologist Dr Matthew Burge set a “Hail Mary” pass in flight, all I had to do was catch it and stumble over the line of life! The Hail Mary in this game is the new Immunotherapy miracle – “Keytruda” by Merck in California.

My Keynote trial 158 progress
The trial has a 5 year time frame, you see more detail under “About my Cancer” entry.

Another X factor – Matt is a fellow cycling nut!
In cycling speak, Matt showed me his wheel and generously towed me up the climb of my life, and back into the safety of the bunch! What can you ever say that will be enough to thank him? Actions will have be enough, I will Live everyday until I die, in that order and I intend to do something remarkable and resourceful that adds value and repays the opportunity.

These are key points that got me through

Pursue Perfection: It 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. It defines your purpose and contribution value.

1. Be a little unrealistic often – it transcends the now to a place where aspirations can breath and bath in their reality.
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 it with talented people that can make it all a reality.

Some Tricks

Allow yourself to be a little unrealistic often, to transcend the now, to let your mind go to a place where your aspirations can breath, play and bath in their own realities.

Trusted Pillars of Thought

1. Happen on Life or Life will happen on you
2. Rise and Rise again until lambs become lions
3. We all have the choice to “Try or not to try” until our last breath.

The  Traps

1. Well Intended inexperienced advice that is freely given – and often a trojan horse type gift !
2. Proof is a luxury – do not let the lack of it become your excuse for not taking that next step.
3. Convenience can quickly develop into an unseen terminal cancer, I am not just talking health . . Friendship, Relationships, Business and finances.
4. Be Realistic – Realism is in the eyes on the beholder – make sure you own your own realism.

Life is a one time opportunity

1.  Pursue Perfection!

Pursuing Perfection unhooks you from the traps of a crowded centre. It unlocks aspirations, and allows you to reach into the unchartered unproven potentials at your edge. It is uncomfortable and confronting, but will reveal what others cannot see and allow you to transcend the traps of a crowed centre. This has taken the human race from caveman to spaceman – what could it do for you?

2. Be Remarkable Be Resourceful – Be an Asset

Be a little unrealistic often, to transcend the now, to let your mind go to a place where your aspirations can breath and bath in their own realities and create new plans. Find that one thing that you can be remarkable and resourceful at, an asset, that adds value to those around you and beyond.

3. Learn, Try, Contribute

Learn Learn Learn – Try Try Try – Contribute Contribute Contribute, banish the word retirement and live life as an opportunity until your last breath. That is how you pass it on to to those who follow.