As I reflect back over my life, it looks as if everything I have done is part of an evolution of me. It will always be an evolution – knowing this, has changed things.

I think my opportunity will be done when I have contributed what I have within. I hope this inspires my children forward into their future – I hope that I will be remembered for having done my bit.

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, it gave me a toe hold and a sense of control.

My rule was simple – dump everything out of my head, into chapters or category boxes of my thoughts, knowledge, memories, etc.  I had to do it hard and fast, with no second-guessing myself. I could sift and sort after the dumping was done.

If I was to survive an unsurvivable cancer, then I would need a pristine thinking machine to have any chance. I had to contribute somehow as the Doctors had no other outcome other than terminal – it was just a matter of how long measured in months.

Incredibly over-simplistic – Yes!
Unwittingly I created an environment where opportunity could find me – without this I would have perished without quickly.

The greatest prize in life starts within and seeks its outward reality, do not stand its way with self-doubt, instead help it reach that reality. This is the ultimate contribution and prize we can make to this opportunity we call life.

Trojan Horses and Florence Nightingales
Do not let the reality of others invade and destroy – their realities can destroy yours. Be aware that gifts are very often given for the giver’s benefit.

Chapters of Me

Our lives begin with simplicity, and we just seem to complicate it all from there.
But of course, this is the nature of the opportunity called life.

When things have gone horribly wrong in my life, I slow down, reflect, and find a way to take the next step no matter how small or insignificant it may seem in that moment.
Below is a timeline and an insight into the random unplanned and very unexpected events in my life. Jotting this down has helped me immensely, it has highlighted a pattern on how I have reacted and moved forward. It has also highlighted that when things have gone off track, I have in the first instance focused on the next step, more than the why. Knowing this has become a gift of self-awareness.

1981 October 22nd, one of those young love moments, where Claire and I eloped to Brisbane, Australia from our homes in Waikanae Beach, NZ. Now this is a whole other story for another time.

1989 January – Claire and I were married in Waikanae.

1989 December 7th, just months after we were married and Claire pregnant with our first child, my Dad Dennis suffered a massive heart attack at the age of 52. Dad dropped dead right in front of my brother Graeme and I, during an evening cricket training session – Dad was the team coach.

1990 May – Our first child born, a son, we name him Zachary

1994 August – Our second child born, a daughter, we name her Georgia

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 Bell’s Palsy – 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 An unexpected win – a $150,000, 7.5-metre Italian motorhome.

2012 Broken Neck – During a cycling event and in the lead group 30km’s 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 5:30 am 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 eyeball 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 4-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.

2017 (October 10th) An unexpected complete and full recovery, becoming the 2nd ever-patient globally to have overcome CCA from a stage 4 Metastatic setting.

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 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 learned much in life, many many things that most would struggle to believe as true, like 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 wisdom in life.
I truly have been forged in fire between the Hammer and the Anvil.

Who could plan or avoid such stuff? 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 it 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 conscious view and control have influenced my direction in life. They created new visions and the challenges and aspirations that go with them, it is always sweet and sour, easy and hard – it’s all momentum and its always my choice as to how I use this momentum.

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 Puhalla.
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, 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 Dr 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 Snow 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.

Winning the Global Lottery Keynote 158
A phase 2 trial with just 9 CCA patients I became the 2nd  patient ever to fully respond – there had been a woman in the phase 1 trial who had also fully responded. As I write this there is now another woman who has also succeeded.

Claire and I owe special thanks to CCF USA, who flew us to Salt Lake City where we met other CCA patients along with 300 of the world’s best Cancer Researchers, Oncologists, Surgeons, and Pharmaceutical Companies, who had all come together to focus on this terrible cancer.

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

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 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

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 crowded center 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.”

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.

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.

‘Need’ drives the intangible to find its outward expression, therein lies the ‘magic.’
The ‘Intangible’ cannot be seen by another and it will live on well after devastation and destruction has swept through. The ‘intangible’ is our most powerful and indestructible ally, provided we accept and acknowledge it’s existence. It lays at our centre and it grows with our attention and willingness, ready to serve our genuine thoughts and needs.

Thoughts are Things – they define outcomes.
I think that Thoughts and Thinking are the true assets and currency of life.
When you survive an unsurvivable cancer, the conversations quickly move to the “how” and what made me different, what was the magic potion or thing?

I have been deep within the jaws of death on several occasions, and without a doubt, modern medical resources and skills have literally pulled me back from beyond the point of no return. As it transpired my thoughts and thinking became the critical factors, they kept me alive long enough for the opportunity to find me. A new largely unknown and unproven treatment saved my life and our family. I became a cog in a modern penicillin moment in medical history.

Anything and Everything is possible while I remain open to it – it had to be that simple and naive, as the only proof within this cancer was in its survival statistics, and that said I would die sooner than later. To naively embrace this as reality, was my only logical pathway to survival.

Remaining open to an opportunity that I could not see, helped me develop a new reality, and more importantly, shielded out the negative realities of the many. Terminal Cancer is a significant challenge on its own, but to allow in the tsunami of well-intentioned advice, quickly becomes “Trojan Horse thought gifts,” which are the biggest cancer of all.

I could not fight two cancers, so I got busy and filled my mind with my own thought gifts, which left no room for trojan horses. Unfortunately, this rankled some relationships, and I began to realise that accepting these gifts was more about helping ease their discomfort, than it was about helping me.

My Reality is my reality, and yours is yours, this became a critical understanding of my success.
Beware of the trojan horse gifts delivered by well-intentioned givers. In reflection, I was too busy building my own reality, which left little space for the ill-informed realities of others.

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

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

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

The statistics are an indicator of past results, do not let them steal today’s victory.
I knew if I was to survive, then I would need to pull off a seemingly impossible “Walk on Water” magic trick, that defied gravity, the stats, and the realities of many. Flamingoes are masters of this trick when faced with a threat – they seemingly walk on water to get to the other side. 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.

The new modern-day 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. Metastatic stage 4 CCA patients lives are cut dramatically short by this horrid cancer.

Cancer will become a curable and manageable disease in my lifetime, and I want to remain part of that solution. I have gained unique insights and experiences that can contribute, so this is where my primary focus will remain. I can think of nothing better in life, than using the experiences I have endured, to help contribute to those who follow, to see and feel the smiles of families and friends who have just beaten cancer.

I know what didn’t happen, and I know what needs to happen, so there is plenty for me to focus on. Cancer creates pop-up communities around each patient, they to become victims without warning, what I have learned and now know will save lives today! Therein lies my challenge.

View my Diary

My Walk with Cholangio the Beast

My original scribbles to dump & organize my thoughts.
The beginnings of “Chapters of Me” where nothing needed to add up or make sense, it just needed to be recorded somewhere. It was a huge challenge of both mind and body as I attempted to tame and then defeat this seemingly unbeatable Cancer Beast …

View 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