Being a little unrealistic often

Being a little unrealistic often feeds opportunity, it feeds the smiles and it feeds a life worth living

My name is Steve Holmes and I live on the Gold Coast Australia, originally I was from a small town called ‘Waikanae' about 40 mins north of New Zealand’s Capital City Wellington.

I am 57 years old married with two adult children, Georgia 23 and Zach 27 – Both live in London.

I have Cholangiocarcinoma, (Bile Duct Cancer) and this is my first post, a post that I never expected to make. I often joke that I have gained a new ‘Degree' - a Cheeky Analogy only.

• I was Diagnosed with Extrahepatic Cholangiocarcinoma in October 2016.
• I was Diagnosed Terminal in August 2017 – with a couple of months left in my tank.
• Currently I am still alive and kicking, on an immunotherapy Trial (Keytruda)

Why did I think I had a couple of months left in me? 

It was a significant struggle for me to stay topside, and as most would know this is an extremely painful and debilitating slide beneath the surface of life. My younger Brother Graeme had 2 years earlier been in the exact same position as I was now, except I was deteriorating faster than Graeme. Graeme fought hard but did not make it. Now it was my turn to face ‘Cholangio the Beast’. Graeme had given me a measure and something of a template on how to deal with this, I found myself reflecting often on Graeme’s battle, and how unaware and disconnected I really was. Hmmm now I am fully aware, and I was falling faster and harder than Graeme. I had witnessed his demise from a far, and I had witnessed what ‘Cholangio the Beast’ had done to Graeme’s very loving Wife and Children which only made my current slide even more darker and frightening. The absolute worst thing about being locked in combat with ‘Cholangio Beast’ is what it does to those immediately around you. My Mum had already endured the loss of her husband our Dad Dennis. Dennis dropped to the ground in front of Graeme and I as he coached our local cricket team – he died where he landed from a massive ‘Heart Attack’ he was only 52 years of age. Then Mum loses her son to Cholangio the Beast at 52 years old. Now she was about to lose her only other son, the impact is truely torturous, and I haven’t even mentioned the impact on by best friend and wife Claire and our two wonderful kids Georgia and Zach.

I Meet John

John lives in the same street as me, he is 10 years older, John was very fit and had observed a healthy diet and attitude to life. John and his wife Karen visited Claire and I approximately 3 months after my initial diagnosis, as he had also recently been diagnosed with ICC. – I was no longer in a club of 'one' anymore. AND then there was Andrew a patient in Dr Matthew Burge's waiting room at the Royal Brisbane and Womens hospital. Andrew also had Cholangiocarcinoma and a Whipple Operation. I am definitely not the only one with this rare and lethal ! It was now a ‘We,’ environment.

Lifted above a Word

I began to confront the whole truth of living with Cholangio the Beast by reading the contributions on the Cholangiocarinoma Warriors Fb page, stuff began to stand out, common points and intersections of issues, Psychologies, Philosophies, Fears, Attributes, Character and a lot more stuff. John and Andrew transformed me from an ‘I’ to a ‘We’ and then this community lifted me above myself, I was not the only one carrying the weight of a word that I could not even pronounce let alone spell.

The Cholangiocarcinoma Warriors Community facilitates expression, sharing and learning from each others experiences. These types of Online Communities foster and enhance humanity, they also demonstrate the very real and tangible upsides to our highly fluent Social Technology Environment. We are now a generation of common people who are highly connected and informed. This ‘Social Media’ wave is fast unlocking the power of the once isolated individual’s knowledge, this knowledge is being pooled, generating a new higher level of understanding, solutions and results which are yet to be reflected in the dreaded statistics of Cholangiocarcinoma. Social Technology’ is constructively lifting us all above and beyond the Oncology rooms, facilitating, solving and potentially Curing. Many hands make light work!

Pre cancer I blindly took life for granted – NOW – Cancer has transported me to the edge, and from that edge I have can seen more, I have found a new freedom, a freedom that I didn’t know existed, a freedom from the conformity of a very crowed centre.

The Valley of Death 

It seem’s that more and more of us are trudging and negotiating the same dangerous and treacherous pathway, but what I have quickly noticed, is that we have many different interpretations and approaches on how we each negotiate this pathway.

As an Entrepreneur and Businessman I learned early on, that two people can look at the same thing yet come up with completely different views or understandings. This is a significant factor in human behaviour and it provides ‘Opportunity’ and ‘Challenges’ which can lead to very successful outcomes. These two words ‘Opportunity and Challenge’ generate hope, they inspire visions of successful outcomes. They are two constructive forward moving words that underpin the value of ‘Living.’ I continued to infuse these two simple words into my ‘Cholangiocarcinoma psychology and strategies.

A Bar with Green Tiles 

I actually began writing this post on my Iphone, sitting at the bar of a Tedder Avenue restaurant called ‘Bistro Chico’. It was about 4:15pm and Daryn who is the animated, entertaining Chef and Owner is just limbering up for his nightly show of “foodology” a performance that delights his constant flow of foodie followers. It was one of those magic Gold Coast Saturday afternoon’s that drift into a pleasant evening. I was feeling unusually serene and peaceful, I felt in control of my thoughts and emotions in somewhat of a reflective manner, I felt great. OK that was setting the scene stuff!

So here I am sitting at a bar sipping beer and felling great, this is so far away from the ICU’s, the pain and dark dark places of the past 18 months. As I sipped away on my beer, and without even realising it my mind had slipped away peacefully to somewhere beneath my everyday conscious battleground of thought. I was there sitting at a bar, but I wasn’t, I must have been in this submerged state for at least 20 minutes. Suddenly my mind jolted back to the surface, where I realised that I had just been sitting there starring at the tiled wall behind the bar, counting out how many different varieties of tiles they used and also thinking about the past 18 months – How does that happen, the brain is indeed a deep deep mystery at times. As I looked around the bar I realised more people had come in, and sat around me, they probably were thinking I was on drugs or something? As my mind and hearing came back into focus, I could hear conversations, people laughing and people discussing issues, issues that to me that seemed so trivial, compared to the enormity of what I had put my family through. I remembered a recent wedding that Claire and I attended. For some reason, the Vowels that Debs and Chris were exchanging, rang out loudly and I heard them with a clarity, as if it was the very first time that I had heard them, they transported my mind back to when Claire and I were standing at the Alter nearly 30 years before. “To have and to hold from this day forward, for better for worse, for richer for poorer, in sickness and in health, to love and to cherish, till death us do part.” WOW I realised in that moment that I had used up all the currency of those vowels, and yet here I still stood – sitting at a bar sipping on an Estrella, life really is an unpredictable space, a space in time that each of us equally have the opportunity to fill.

It had been bugging me for a while that I had put a lot of effort into making notes throughout my battles, which is something a good friend called Kev had urged me to do, and I thank him for that. But I have been tardy with continuing and sharing this, so I decided that no excuses were acceptable, and as always I would take that ‘Next Step’ no matter how hard or ugly it maybe, and yes this is my ‘Next Step’. I decided that now was the time to continue eating the elephant, one piece at a time and begin by sharing my thoughts and feelings here in this first post.

I had got this point in my life with some very simple daily if not minute by minute self-instructions. “Steve just Get Up Get over yourself and Get on with it! Just take the next step, no matter how hard or ugly, and keep doing it until the magic of momentum reaches out and embraces you.”

A Word of Warning 

I am ambidextrous, which I think has contributed to my eclectic, abstract and creative thinking style. Yes I am very much a person for connecting the dots, but also a person that try’s to make the dots…an interesting mix!

So what has all this got to do with Cholangiocarcinoma…hmmm thats a good question, I guess its just a way of introducing who I am as a person and it is my next bite at eating this Elephant. I sincerely hope that in some way at the very least what I have shared will bring a smile and a little hope to those who find themselves trapped and cornered in what looks to be an impossible or unwinnable position.

Until next time

Cheers Steve

+61 415153522

[email protected]

Ps I had a very uplifting Trial Nurse called Erin, who took me aside in the early days and said:

“Steve Cancer has taken so much from you, but understand this Steve, Cancer can give you so much back. Go out there and use it to your fullest advantage and make your life grand again” – Thank you so much Erin, I am sure you are not aware of how significant and powerful your advice was to me – it courses through my veins like an energy source.

Pss This is the link to my notes – ‘My Walk with Cholangio the Beast”

Also see

https://cholangio.com/

About Steve and Cycling on the Gold Coast