MY CCA Interview

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.
My hope is, that sharing my experiences publically, will provide something more tangible to help others who are facing what appears to be an unwinnable challenge. A Challenge beyond their current 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.

A little 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) + Bachelor of Business 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) + Bachelor of Commerce 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.

Chief Evangelist for Cholangiocarcinoma

Recent Posts

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). Hopefullly as you read this the number will have grown.

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.

Significant Change
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.

Details

(CCA) Cholangiocarcinoma,
Alongside Pancreatic Cancer, CCA is the most hostile of all cancers.

My diagnosis –

  • Extrahepatic (Distal) Cholangiocarcinoma
  • Terminal – 6 months
  • Surgery: 12 hr Whipple possible.

Cholangio-carcinoma snapshot.

  • No Cure
  • No early detection
  • 6.7 months average survival
  • 5 yr survival < less than 8 %  or
  • less than < 1% if Metastatic as I was.
SURGERY: Whipple – 12 hrs & 7 surgeons, Total all surgeries 25 hrs – removing

  • Gallbladder
  • 2 Lymph Nodes,
  • 80% Stomach,
  • 100% Duodenum,
  • 95% Bile Duct,
  • 33% Pancreas
  • 100% Hepatic artery
TREATMENTS: 2 Trials

  • Trial 1: Hamburg Germany via RBWH 6 moths Gem/Cis Chemo agent (Weekly)
  • Trial 2: Merck California keynote trial 158 – 5 years to 2023: Keytruda (3 Weekly)
  • Trial 2: I Voluntarily ceased Infusions – Keytruda @ 15 months
  • 3 years monthly Ct Scan’s,
  • 2 years 3 monthly Ct Scan’s & Ultrasounds,
  • Hundreds of infusions & blood draws – lost count – all my veins have long since collapsed.
SURGERY: Aneurysm Event – Main Hepatic Artery
2017 January 5th
Life was now being measured in minutes if not seconds.

  • 1-month post-Whipple Op, (at home,) I  began vomiting up large volumes of blood.
  • Became unconscious
  • Ambulance response kept me alive to reach GCUH emergency
  • Interventional Radiology Surgeon Tom Snow & a large team  of experts performed a 5-hour Op
  • Found the hole in the artery and restricted bleed out
  • 100 % Termination (removal) of the hepatic artery
  • This artery supplies approx. 30% of the blood to the liver.
  • Event was a direct complication of my ‘Whipple’ Operation.
  • If not for Claire’s cool head and decisive actions I would not have survived until the ambulance crews arrival.
  • Luck also played a factor, as  Dr. Tom Snow was leaving the hospital car park at the time & was called back just in time.
What is Cholangiocarcinoma? (CCA)

Along with Pancreatic, Cholangiocarcinoma – CCA is the most hostile of all cancers.
An adenocarcinoma is a tumour growth that originates within the bodies epithelial tissue (Skin) layer around all our organs. This skin layer has a mucus secreting layer of glands that line and protect our vital organs.

CCA invades many connected organs via the bile ducts, it does so completely undetected with stealth and speed, and typically goes undetected until a stage 4 outcome. Impacted organs –

  • Liver
  • Gallbladder,
  • Stomach,
  • Pancreas
  • Duodenum
  • Lungs
  • Lymph Nodes

Survival – Outlook

  • 5 yr Survival = less than 8 % –
  • 5 yr Metastatic Survival = less than 1%
  • Average survival period: Extrahepatic = 6.7 months
  • Average survival period: Intrahepatic -13.2 months
  • Average survival period: All = 7 months

Cholangio the undefeated Beast
  1. Phase One Trial Keynote trial o28 – by Merck produced the first ever NED response (Patient – Rose was in her 70’s)
  2. 2015 Matt Reidy, off trial and  privately treated also succeeded becoming NED.
  3. 2016 Melinda Bacchinni who had limited success on TIL regimes, switched to Keytrud and had immediate success becoming NED.
  4. Phase Two trial began and I was signup up in early 2017
  5. Immune Checkpoint inhibitor has made a breakthrough in Cholangiocarcinoma. It had previously been successful in other Cancer cohorts such as Melanoma, Lymphoma, and Lung were already achieving greater responses.

Success is not guaranteed, but the word cure and cancer are now being referred to in the same sentence as immunotherapy.
We, 4 patients, have now joined the 1% of the 1% across all cancer cohorts.

Knowledge Base Links
Associated
Contact Details


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.

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

Chief Evangelist for Cholangiocarcinoma

A luxury to summarise

Sometimes you have to Walk on Water to get to the other side –

‘Survive’, then ‘Thrive,’ in that order.

Every time I am faced with something beyond my conscious measure, my response begins within, somehow it always finds its outward expression from there.

Humor me a little as I explain my thinking.

My defining thoughts are my basic ABC +123 factors – guidelines that I have noted and evolved over the years. A collection of what has worked for me and I have learned to trust.

To me it is critical that I defined these separately into two different focus groups, it has made it far easier for me to gain clarity and focus. I learned very quickly that when I was truly in survival mode, then all I could focus on was to survive and survive well, hence the ABC. When I survived I could then turn my focus and efforts toward thriving. 123 is as basic as it gets, and I feel that numbers and thriving make a great title fit.

The ABC on Surviving myself

These are the words that best describe my thinking.

  1. Acceptance: Acceptance of the current reality is everything. Acceptance allowed me to become open and aware. This allowed me to reset and regain some type of control – without this, I could never have moved forward.
  2. Willingness: An Unconditional Willingness allowed me to remain open to the possibility, that I could Walk on Water, to reach the safety of solid ground on the other side.
  3. Chapters of Me: I wrote myself out of a bad story and into a better one – a new reality  – my reality not anyone else’s. I created dozen headings that I called “Chapters of Me”  and then began a big empty out, dumping every thought out of my head and onto paper. I needed to free up my mind for the challenge ahead. I needed to better understand how I thought and what I did with those thoughts (My thinking).
My life long Mantra

Happen on life or life will happen on me-
Having said that, “Life Happened on me,” and it did so in a bloody big way. My weakness has always been, thinking because you have a plan and it works, then it will always work – all I can say is I fooled myself with this comfort of thought. Life is tricky and fast-evolving, so I too had to accept and exceed this – hence the 123.

I have learned over time that Pursuing Perfection is very healthy – I have also learned to not let the lack of perfection hold me back, that’s what the pursuit bit is for!

Let me explain a little further: Pursuing Perfection has always confronted my potential, it opens up honestly, and delivers opportunities. It keeps me grounded and on direction. It can be very scary, liberating, and overwhelming, all at the same time. It defines my purpose, my contribution value, and most importantly my relevance.

When the music stops, you have to start making your own – and trust me, that took a lot of practice before I could listen to my own tunes.

What I think within, finds its outward expression and actions.

123 – Thrive Remarkably

Ok, it’s more like 123 x 2 = 6, but it works really well for me.

  1. Be a little unrealistic often – It feeds the dreams, builds vision, and stimulates my aspirations. Mostly it gives my dreams the space to breathe and bathe in their own realities, free from the overbearing logic of others. It tends to throw up that one thing!
  2. Do that one thing, then
  3. Be remarkable @ it, and
  4. Be Resourceful with it.
  5. Add Value to it or don’t do it
  6. Surround it with talented people of character, that share the vision and can make it a reality.
ABC +  123  creates Momentum and momentum is life, and it is very transformational.

My life is continually dependant and defined by my willingness to keep taking that next step, and the one beyond that, despite the absence of any proof.  I do this in the hope that the magic of momentum will reach out and embrace me. It lifts and transports me from the now to a place where my dreams can breathe and bath in their own realities. A place free of rules or logic, a place where I get to Walk on Water, free from the realities of others. This is how I survive the facts from the inside out.

Chief Evangelist for Cholangiocarcinoma

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 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 skillfully 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 learned 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

Chief Evangelist for Cholangiocarcinoma

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”

Chief Evangelist for Cholangiocarcinoma

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.

Living life in the “Terminal Lane”  is an experience you would never want but to survive and carry what I have learned forward is priceless. That quote in Dale Carnegie’s book “Think and Grow Rich” – “Success is forged in fire between the hammer and the anvil” hmmm that’s definitely me.

What makes me happy in life is far less complex than that of others – Number one for me is knowing my own story, and its reality and understanding that others are just as empowered with theirs. I like to Live Lite  – it is an everyday thing!

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

Every day I run, cycle, swim in the surf, and let out the real smiles. I am no longer the loneliest person in a crowded room and absolutely love the feeling of being normal, it’s so simple but it’s the best thing ever

Chief Evangelist for Cholangiocarcinoma

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.

Chief Evangelist for Cholangiocarcinoma

In reflection, I fell into a default mode

Looking back what I was good at, was

  1. Acceptance
  2. Willingness
  3. Creating my own reality

These 3 traits contributed immensely to making better decisions, although, at the time, I was not aware of just how significant this would become. These traits galvanised both Claire and me, very importantly it kept me busy and focused, which unwittingly kept the paralyzing impacts of chaotic fear at bay.

Becoming part of the Cancer Cure Equation
Overcoming such a huge battle to win the title (so to speak) is an amazing experience, but then you suddenly realise, that you have to defend it. It made perfect sense to me, to keep my enemy (Cholangio the Beast) close and align our newly acquired knowledge, experiences, wisdom, and purpose to become part of the cancer cure equation.

The unexpected responsibility
Becoming one of just 4 people globally to ever survive metastatic Cholangiocarcinoma, via immunotherapy (Keytruda) has placed a responsibility for me to pick up the torch and help the many others that follow. Along with Matt and Melinda as survivors we have something significant to offer. I must compliment their efforts with mine.

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!

Chief Evangelist for Cholangiocarcinoma

The new penicillin

My success in overcoming Cholangiocarcinoma from the metastatic setting underpins a significant change in stage 4 terminal cancer diagnosis survival – this is a modern-day penicillin moment in history, patients do not survive this cancer from a metastatic setting.  Cancer will become a curable and manageable disease in my lifetime and I want to remain part of the solution. I have gained unique insights and experiences that can help this happen.

Chief Evangelist for Cholangiocarcinoma

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 Claire & I created a Tool Kit to share

Claire and I have searched for 2 years and found nothing that resembled what I actually needed when first diagnosed, so we began creating one.

It’s logically evolved into a series of Tool Kits tailored specifically to each person impacted by a serious cancer diagnosis, beginning with a Tool Kit for the Patient, and a separate tool kit for their Caregiver.

A pop up Community

When a person is diagnosed with a serious cancer it immediately creates a pop up community of concerned love ones at its centre and quickly ripples outward to friends, work colleagues and the wider community. The Cancer Tool Kit Series works to address this providing specific tool kits solutions, all of which are designed to sync back to one harmonious and curative theme.

There is significant power, perhaps magic within a community who move in harmony to achieve one common goal.

The Cancer Patient and Caregiver community

The Tool Kits are designed from the collective of experiences, knowledge and wisdoms derived from “our Globally Connected Patient and Caregiver communities.” A gift forward to the Newly Diagnosed Patient and Caregiver, from those who have successfully navigated the challenge in overcoming cancer.

A Peer to Peer Gift from Patient to Patient & Caregiver to Caregiver.
Delivering todays potentially curative and lifesaving knowledge today. Delivering the choices and opportunities directly into the hands of the newly diagnosed patient and caregiver.

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/

Key thoughts

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. 

Chief Evangelist for Cholangiocarcinoma

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.”

Chief Evangelist for Cholangiocarcinoma
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.

1999 Claire and I win a brand new $50,000 Land Rover 4 wheel drive vehicle, via the Unlimited Magazine.

2002 I suffer a 4-month episode of Belspalsy – looks a lot like a stroke, but is an infection of the 7th cranial nerve in your face, very debilitating – This was most likely a result of work stress

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.

Chief Evangelist for Cholangiocarcinoma

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.

Chief Evangelist for Cholangiocarcinoma

Read my Diary

My Walk with Cholangio the Beast

My original scribbles and attempt to organise my thoughts
The beginnings of “Chapters of Me” Nothing needed to add up or make sense, it just needed to be recorded somewhere. It’s a bloody big challenge of both the mind and body to defeat or tame this seemingly unbeatable Beast …

Read my Diary

Life is Evolutionary with or without me ! We are all engulfed in this constant evolution. Embrace it, I do

Steve Holmes, www.steveholmes.net.au

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
Letting it all out like a tweety bird in spring