PATIENT PERSPECTIVE

CHOLANGIOCARCINOMA AUSTRALASIA
PATIENT| RESEARCH | TRIALS| TREATMENT | SURGERY
CCA Introduction Pack

Steve Holmes

QUESTIONS THAT DEFINE

Describe how your journey began

My journey began while cycling on a Saturday morning, when a sudden fatigue set in, and I struggled for the energy to get home and onto the couch and to rest. The fatigue continued to worsen and after a 5 days my stools turned a pale clay colour with a yellowing of the eyes and skin setting in. This was followed by severe persistent itching over my entire body.

What Medical Advice did you seek ?

My Wife Claire went to Dr Google and then immediately phone my Doctor, which led to failed blood tests, Ultrasound and CAT Scans within the first few days. My Doctor arranged for a surgeon to immediately perform an Endoscopy to stent the bile duct blockage and reduce itching (Bilirubin Levels) At this stage the Doctor thought it was Gallstones, but also wanted a biopsy of the blockage

How did you receive / deal with your diagnosis

The Surgeon that performed the endoscopy was not available to share the result of the biopsy, so we had to choose another surgeon to meet and discuss the results with. All I had been told was I had a stricture and blockage that should be removed, and no mention of cancer. At this meeting I was told I had “Stage 2 Extrahepatic Cholangiocarcinoma.

How did you make Decisions

Claire my wife stepped in and led the way – absolutely amazing calm and decisive, never overbearing always considerate and allowing me the freedom to be me and make my own decisions. Personally we are a team, always have been so thats how we approach the avalanche of information and overwhelm that seemed to come from nowhere.

Any unusual or interesting facts?

This is a very rare and aggressive cancer that has a 6.8 month average survival period – very similar to pancreatic yet this in not hereditary.
My younger brother Graeme also had the exact same diagnosis in 2012. Graeme battled for just over 18 months – RIP 3rd May 2014.
OH YES on a lighter note – but in reflection only – as “True as a Roo’s Tale” CLICK HERE

Mid 2016, little did I know that I was fast approaching the climb of my life.

HOW WOULD YOU DESCRIBE YOUR JOURNEY

An extract from my diary entry in 2017 says it all.
A MESSAGE TO CHOLANGIO THE BEAST

It all happened in the briefest of moments, Cholangio 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 calmed, and from that 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 you unknowingly reactivated and freed my inner drive and vision deep within my centre – I could suddenly see once again, a “Looking Glass” moment beyond your ugly grip.

Cholangio I conceded to your unwanted grip, but as you rejoiced in your victory you loosened your grip for just a moment, and a moment was all I needed, I was ready and re-engaged, slipping your grip and my imminent end.

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.

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.

Another extract from my diary…
A PATIENT GRADUATION SPEECH LIKE NO OTHER
My Oncologist 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”

IN THE REAR VISION MIRROR

Coping with 25 hrs of surgery’s

Without surgery – 6 months, lets see what happens after that, maybe 18 months?
But of course when we open you up, we may find it’s worse than we expect, in which case we will just close you up and move you directly to a palliative care unit.

No one knows what lays ahead of them, I think we all would love to say we do, but that is simply not possible. I have learnt that the future is unknown for a reason, it is another function or factor in the fabric of life in itself. I guess that’s why someone very smart invented the word “Opportunity” to bridge the murky divide and inspire us forward into this unknown abyss? I think that same smart person also invented the words “Planning & Strategy” to provide a tangible sense of empowerment and control over the unknown.

The future will remain unseen until it is seen, no matter my efforts. The words that influenced my future were – “Acceptance, Willingness and Adapting” these were tangible words that helped me cope as the unknown future relentlessly happened on me – that is what I have learned, and that is what I now know:)

“Knowing and Unknowing” are both influential overwhelming states of mind that can spin you out. I needed control to survive this abyss, so I set out to become the best “ME,” and the best patient that I could possibly be. By inspiring myself just maybe I could inspire others to rise above and achieve the unachievable. This is what would need to happen if I was going to survive – so that’s how I shaped my thinking and focus. In reflection I am glad for my naivety, and not knowing what lay ahead of me – if I had known hmm, it would have been more psychologically crushing.

Looking back this was the real moments that I began to discover another me that lived within.

  • December 8th: The day I was wheeled into the final position for the surgeons to begin. It was also in that moment that I could so graphically see the moment my Dad collapsed to the ground and died in front of my brother and I. That was December 7th 1989, as the needle went into my arm I thought, was this my turn?  The surgery called a Whipple took 11 hours for 7 surgeons.
  • January 5th: I fell unconscious and began vomiting up large volumes of blood – an aneurysm in my hepatic artery was well under way, a very fast ambulance trip followed by an 5 hr emergency intervention. I had lost over 50% of my blood in less than a minute – I was quite literally seconds from my last breath as i furiously bleed out.
Surgery success – now you have 18 months – maybe?

Surgeons get to the point bluntly and quickly – Steve, you now have 18 months be happy that its not 6 – although that is still a strong possibility!  Treatments such as  chemotherapy and or radiation treatment will not prevent this. Maybe you can consider a trial? what is a trial, I asked ? hmmm how naive I was – The long and short of this is that I started a Chemo Combo trial originating out of  Hamburg in Germany, and so began another unknown journey – absolutely horrid and beyond imagination – once again not knowing is often an advantage. What lay ahead was 5 years of trials if I could stay alive to participate.

What would I do different knowing what I know now?

The problem with this cancer then and now, is it does not leave any survivors in its wake – 8 to 10% at 5 years (on paper) and less than 1% if you become metastatic as I was – once its outside of the liver, it’s not worth reading about in any capacity of medical journalling.

What would I do different ? Before committing to ANY treatment, I would obtain 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…
  1. Acceptance: I accepted stuff quickly, which allowed me to reset and move forward with some type of renewed control.
  2. Willingness to keep getting back up and making that next step, despite the absence and comfort of proof. Making that next step no matter how small or insignificant became my obsession.
  3. Master Storyteller: I wrote myself out of a bad story and into a better one – Alice and Wonderland and The Wizard of Oz, came to my rescue big time – you can see more on that at www.steveholmes.net.au

Also Important in reflection – 
So many patients want to take control by adding in – most often it’s very misguided ad hoc treatment ideas via relentless pressure from well meaning family and friends. I stuck with the science and eliminated EVERYTHING that is or was proclaimed by the unaffected masses as healthy, which meant no health shop solutions. Desperation drives belief in almost anything that sound logical, I understand that helpless caving-in feeling that avalanches you wave after wave as you search for anything that might work. I was mentally and physically spent and extremely vulnerable,  so any suggestion of miraculous cures rang loudly in my ears. So many very compelling stories with murky unsubstantiated facts are just waiting for patients with cancer. I personally learnt to resist, and instead only listen to those who have been through this exact same diagnosis, and also those skilled medical practitioners who had current experience.
At my weekly trial debriefs I had nothing to add – it was simple, uncluttered with no extra self induced pressure. I had not interfered with result reporting by adding in supplements, probiotics, microbio boosters or THC /CBD – absolutely zippo, I followed the expertise and their science exactly – this is how trials succeed and I knew I had to give it a full go.

A net gain 

I lost a lot in those treacherous swamps of Cholangio, but I also gained the friendships of many amazing people, people who taught me far more than I sort. They gifted me with knowledge and experiences that most will never  know or realise. What I left behind seems so insignificant in reflection …hmmmm ….

  • GALLBLADDER: Removed
  • STOMACH: 80%
  • DUODENUM: 100%
  • BILE DUCT: 99%
  • PANCREAS: 33% (head removed)
  • LYMPH NODES: 2 removed
  • MAIN HEPATIC ARTERY: Terminated
  • HAMBURG TRIAL: Gem/Cis 6 months – Weekly (Complete failure)
  • KEYNOTE TRIAL 158: Keytruda – Merck – 5 years  – Complete Response  Scan 1 (9Weeks)  Trial ongoing to 2022

TRICKS, TRAPS AND ADVICE

THE 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.

My Favourite sayings
  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 Meaning but wildly conflicting ambiguous advice, that really only serves to ease the awkwardness of the giver.
  2. Proof is a luxury – do not let the lack of it become your excuse for not taking that next step.
  3. Convenience can very often be a trojan horse gift – be wary of such gifts.
  4. Be Realistic – Realism is in the eyes on the beholder – make sure you live your realism.
 ADVICE TO MY CHILDREN 

In Sickness and Health for richer or poorer this has worked for me . . .

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.

Why do all this?

For my brother Graeme Holmes (30th March 1962 – 3rd May 2014)

Graeme you battled blindly, you had no knowledge of the beast you fought – you had no Warrior support as I have had. You had no chance to make it out of the treacherous swamps of Cholangio and back to safety of solid ground, yet you shone a torch high for me. Graeme I am so so sorry that I did not fully understand what you were going through – How can I thank you other than by my actions.

We do this for Graeme’s wife Shirley, and their two Children Melita and Cody who must continue on without their Dad.

We do this for all those amazing Warriors that we have met and battled alongside, who have unselfishly enriched our life, yet still battle on within the swamps of Cholangio. Claire and I stand ready with our arms stretched out to pull you back up to the safety of solid ground.

Rise and rise again my fellow warriors until lambs become lions.

Steve & Claire

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