Happen on Life
before Life Happens on you !
Broken Neck. Fatal Aneurysm & Terminal Cancer – I beat odds
It was never going to come down to
How tough or Smart
It would always come down to how Willing I was
and luckily I had that in spades full!
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 and foot. Yes I love to cycle and run almost everyday, which includes the all important coffee sessions that follow. The Gold Coast has an amazing work life fusion as part of its culture especially for the health and fun conscious ‘Active Lifestyler’. – The Gold Coast environment energises, motivates and creates.
Living Life in the Terminal Lane
Living life on the Terminal Lane has taught me to . . .
“Live Lite – Eat Lite – Move Lite & Play Lite” !
I run more than I cycle, I eat light, I drink light, I smile a lot more. I love being normal.
What Got me over the line
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. I .Retained my “Willingness” – an unconditional Willingness. It was all I had left in the tank.
A New Vision
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 love that I can have a vision with all the anticipation and uncertainty that goes with it. Having something to look forward to drives me, it gives me Purpose and Direction. I’d say that’s a good enough reason to stay top side, for a while longer.
The Pain of ‘Living’ far outweighs the Pain of Dying and it is an understanding worth living for every day.
What gets me out of bed every morning ?
Personally:
The Gold Coast has a lifestyle edge to it, and getting out of bed to join the vibe is compelling.
Professionally:
I find it so inspirational that everyday I get to work and share my Personal Vision, Purpose and Contribution Value.
Passions
Family, Friends, Education, Reading, Fun Food and Wine. Being a Kiwi rugby is always in the mix, I love road cycling, running, and all those post ride /run bull sessions over coffee. The coffee sessions always define our prowess and elevate the truths of conquests – massaged at will.
Family
Born and bred Waikanae Beach NZ
Reside 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 London UK. 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. As I write Georgia is looking to take up a new position with Babylon expanding it’s footprint into the Canadian market.
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 currently Managing Director and CEO 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.
Back up and almost running!
I am really happy to be back amongst it and continuing my mission of reinventing the “Connection Experience”
I develop Online Business Communities.
Smart Centralised Community Hubs built exclusively around the Villagers Needs and Aspirations.
We then insert the “Biz Villagers” into these very engaging Communities.
It has been my experience in developing out sporting communities, that has contributed to our current “Connection Experience” options. We are now operating across a much wider range of sectors than originally planned. The common denominator that has grown from all this, is the “Bottom Up Villager Model” which is at the heart of almost all business endeavour.
SEE INTERVIEW
BEN NET Interviews Steve Homes
Back up and almost running!
I am really happy to be back amongst it and continuing my mission of reinventing the “Connection Experience”
I develop Online Business Communities.
Smart Centralised Community Hubs built exclusively around the Villagers Needs and Aspirations.
We then insert the “Biz Villagers” into these very engaging Communities.
It has been my experience in developing out sporting communities, that has contributed to our current “Connection Experience” options. We are now operating across a much wider range of sectors than originally planned. The common denominator that has grown from all this, is the “Bottom Up Villager Model” which is at the heart of almost all business endeavour.
SEE INTERVIEW
BEN NET Interviews Steve Homes
But sometimes life just happens!
Belspalsy
Anaphylactic Shock (Prawns)
Broken Neck
Aneurysm
Terminal Cancer
All but one had fatal outcomes if not for fast actions and a ton of luck!
> My Walk with Cholangio the Beast
> My Cancer fact sheet
> Cholangiocarcinoma.com.au
Looking back at myself . . . .what a wuss I was! I avoided the doctor, I avoided the blood donors, I was avoiding myself to death! Yes I was Petrified of the needle pain and and the dark scary shadows that comes with them.
I now have a health list that reads like a list of achievements or awards, a very unfortunate list to have tagged to my name.
It does seem that some of us have to pull more than one turn at the front ! (Cycling speak)
SOME EXPLANATION
2003 Belspalsy:
A very scary stroke like event that saw me remove myself from the public eye for just on 4 months. Fortunately I made a dynamic and full recovery and no longer looked like a dribbling monster who couldn’t talk.
2006 Anaphylactic Shock:
The Wild Prawn that struck me from behind
I love prawns who doesn’t ? I ate the whole prawn and savoured every opportunity, but it seemed I was to have one prawn to many as I body decided to go on a deadly and swift strike with welts smothering my body, swollen eyes and a throat that shut down by life line to air – I collapsed and that was nearly it for me, but fortunately a doctor at hand and a shot of his adrenaline brought me back to the land of the living – Magic stuff that! Needless to say that the Prawns and I have come to an amicable divorce settlement -I can look but not touch!
2012 Broken Neck:
A Road Cycling Accident: Very serious C6 Break, luck was on my shoulder as miraculously the break did not move and no bleeding occurred – It was such a scary place to be having no feeling down my right side from head to hip and my arm and fingers just hanging there. My feeling came back gradually like an incoming tide over an 8 month period, and apart from a souvenir numb thumb tip I made a complete recovery. . . WOW I escaped that one by the skin on my teeth! – I gave my good mate Campbell a big fright as he witnessed me getting scraped up off the road by the ambo’s just one year after I scraped his brother Willie off the road and into the back of an ambulance in the same event . . .Yes it was time to wind back the cycling aspirations!
Cancer 2016:
A Whole New Chapter for sure!
Cholangiocarcinoma (CC) is a cancer in the bile duct – A Liver and Pancreatic cancer combo.
See my 2 Links here . . .
‘ECRP’: 2hr – Stent to restore flow and extract a biopsy from a tumor in the Bile duct just below the liver. ‘Full Whipple’ Surgery: 1.5 hrs pre-op + 10hrs operation by a 7 surgeon team. Remove tumor plus – 80% Stomach, 100% of my Duodenum, 95% Bile Duct, 2 Lymph Nodes, Head of my Pancreas (1/3 Pancreas), and Gall Bladder – Liver was untouched in this op. Aneurysm Emergency Operation: Occurred 1 month after my Whipple Op while recovering at home. The Operation took 4.5hrs and was a Critical life saving procedure where my life was literally in the hands of the very skilled Interventional Radiology Surgeon Tom Snow – it came down to seconds between life and death literally – ‘This type of aneurysm is typically fatal as a result of a sizeable breach of the Main Hepatic Artery wall. This artery is responsible for 30+% of my Livers blood supply – After containing the breach Tom terminated the artery. This event was a complication of my Whipple Operation 1 month before. The aneurysm event created massive internal bleed out – these are often not discovered until its to late, and if it wasn’t for Claire’s cool head and decisive actions I would not have survived for the ambulance crews arrival. – and 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 – if not for a cool head and lady luck, then I would not be here taping this out on the keyboards!
Chemo and Radiation do not work on this Cancer . . .but a new trial offered some hope.
Very heavy 12 hour hospital days peaking in oppressive 5 hour combination infusions: 6 months weekly infusions:
Outcome = failure. Just one week short of completing my 6 months of trial, multiple Liver Tumor Metastasise occurs, which included multiple Pre Cancerous Nodules throughout my lungs. Breathing had suddenly become my next big challenge !
Terminal: July 2017:
The salt timer on my life was down to just weeks, I now needed a divine intervention or a good old fashioned “Hail Mary Pass” pass!
An Oncologist that Cycles – Dr Matt Burge
My NEW best friend for life (although Matt doesn’t yet know this!) Matt had my wheel (Cyclists terminology) and he was ready to tow me up and over an even steeper climb for my survival. Matt happened to be also heading up an immunotherapy trial with Merck in California. This was now my last throw of the dice and only chance of survival, albeit a very slim chance.
What a guy . . . Matt loves Cycling and as it turned out pretty handy at saving lives, not a bad guy to have on your wheel!
Qualifying for Keytruda:
An international immunotherapy trial between the Australian Government and Merck California
August 2017 I began the “Keytruda” Keynote trial 158.
I am 1 of 9 CC patients being trialed world wide
The Outlook for a Cholangiocarcinoma patient:
- Survival: Outcomes typically 8 weeks to 6 months.
- Type: Aggressive /Rare
- Cure: Zero
- Survival: Zero
Becoming the Immuno Warrior and then?
“Steve the Immuno Warrior, is now morphing into Steve the Cholangio Crusader.
Immunotherapy is only a very recent treatment option via trials. Unfortunately worldwide there are less than a handful of CC patients that have been successful.
Immunotherapy trial availability is scare for CC Patients, so far only 13 patients have participated in 2 trials in recent years. It is estimated that only 5% of CC tumor types will meet these strict trial conditions of entry. Clearly 5 % is not represented in having only 13 CC patients on trials. The problem is biopsies, most are inoperable when they discover CC and obtaining biopsies becomes a big issue. The other group suffer the wrath of Oncologists who either do not believe (or wont act until official evidence is available) or you have the Oncologist that simply will not act as it’s only a slim chance of working anyway. There is safety in the stats.
Outside of these trials the potential catchment of patients that could benefit from Keytruda or Opdivo immunotherapy could be as high as 15%. For this to become more of a reality it would need the support of Oncologists obtaining biopsies in their initial diagnosis process, but unfortunately this will have many cost road blocks. As it currently stands most CC patients will die not knowing if they had a genuine alternative treatment pathway to survival.
This will remain a problem until a paradigm shift is made and more patients get access to biopsies during their diagnosis process – this will positively impact the currently dire stats.
A simple Thank You, just doesn’t cut it!
Queensland Health system – especially the Gold Coast University Hospital (GCUH) – WOW what a complete culture of curative positive team work at all levels . . . So many talented and committed professionals on my pathway to recovery. My local GP, Radiologists, Ambulance Officers, Hospital Emergency Teams and Nurses who all kept me in the game, giving me hope and inspiration despite my continuing dire circumstances. You are all “Angel’s in Action” weaving out your next miracle. You are the makers of miracles – you gave me the chance to realise my very own miracle – thank you
Dr Tom Snow who quite literally saved my life with seconds to spare as I suffered a major Aneurysm. Tom you ensured that I made it to the next stepping stone and into the care and skills of Dr Mathew Burge (Oncologist) at Royal Brisbane and Womens Hospital (RBWH). Without you Tom there would have been no “Next Chapter” in my story . . . Thank You – Thank You – Thank You and WOW WOW WOW
Harold Puhala and his team of 7
Harold you managed me well, putting up with my constant interruptions to discuss my passion for cycling, disrupting your flow on the serious business of cancer – yes this was my sneaky distraction strategy from the seriousness and overwhelm.
Suzzane a famous 7er
Suzzane you broke the horrific news to Claire and I, that I had cancer, and it was seriously bad – it could not have been easy for you to deliver such life ending news. Suzzane you shone a light on the enormity of the challenge that lay ahead of me and you were also there a few weeks later to give me the good news that the surgery had been successful – “Clear Negative Margins” had been achieved. I very fondly remember that most of the team of my famous 7-ers were there with you to high 5 that amazing moment. Thank You Suzzane !
Keong a famous 7er
You walked me though my Post Op consultation the surgery was successful, but the cancer would return. Hmmm Success and Failure go head to head in their meaning! Keong you explained that I had no other options of treatment – Chemo or Radiation would not work on my cancer.
Keong you were also subjected to my constant interruptions on Cycling and you humoured me well (Much better than Harold)
Keong you give a glimpse of hope, you had researched other options . . . you found the Hamburg trial and you immediately made the phone calls and connected me to Dr Mathew Burge. Although none of us could have known at the time, this was in fact the beginning of my survival, a critical connection to my outcomes – a small seemingly insignificant connection was the beginning of a miracle. The Hamburg trial was a hideous and oppressive experience, well beyond what I thought I was capable of withstanding. It failed dismally on all counts, I spontaneously became very very terminal, but more importantly I was now in the care of Dr Matthew Burge Matthew was also heading up the immunotherapy trial Keynote trial 158 – luck was in my corner. I became one 0f 9 CC patients on that trial. Thank You Keong
YES “LIFE CAN ALSO JUST HAPPEN ON YOU” DESPITE THE BEST OF PREPAREDNESS.
Some Ps’s to finish it off . . .
Ps. Post Broken Neck: ABSOLUTELY NO BULL!: My first recovery ride 9 months later; I crashed head on with a Kangaroo, totally true – no bull in this school! I gained a black eye and a busted bike with 5 riding buddies behind me to prove it!
Pss. Kevin White is just one of those special people that made a big difference by just being there for both Claire and I. Kevin you were one of many mates who stood by me but you stood taller with your tolerance and of course significant wisdoms and intelligence.
The Sunday Bunch Riders a Motley and Mildly talented bunch of cyclists and runners that towed me through most of my medical /Health Adventures.
Thanks Kev, Mark, Lawrence, Jason, Kylie and Debs you are all unique . . . It was so close to “Being all over Red Rover” for me, I got spat out the back door, all alone on a climb for my life, WOW you all dropped back to show me your wheel giving me the comfort and protection of the bunch to recover and get over the top of this almost unclimbable climb!
Many people choose to avoid those with Cancer, in a plague-like fashion with an unsaid invisible type excommunication from the heard – but not you guys . . . none of you hesitated to embrace and include me, you gave me visibility you gave me purpose – you kept life on my agenda! Hmmm. . . You are all worthy and true “Wild Hogs“ on Carbon, “Wild Hogs” in Lycra and “Wild Hogs” with Compassion. THANK YOU, THANK YOU ,THANK YOU – Psss . . . I still have first dibs on being “William Macey”!!!
“Thought Hacking” on the Fly was the pathway to my survival – “Thoughts are Things, Powerful Things.” All I had left was my thoughts and thinking . . .Hmm I could have been in a deep deep do do on that score! But I quickly came to realise something within me that I had total control over, it gave me back a sense of control and sanity, it also lifted me up and beyond todays ugly realities into my future, a future that I could touch, feel and smell. “Being a little unrealistic often” – fed my dreams. my visions and my purpose – it defied the odds and the realities that belonged to others, it released its magic an gave me the stuff of dreams.
Thoughts are Things
Over years like many of us I have had to deal with the negative stuff, I have always had the disposition to find the positives in the negatives. (Lemons into Lemonade) and fortunately one way or another, I have pulled a few rabbits out of the hat a long the way. Considering all that I have now been through and still standing to tell the tale, I thought it was a good idea to pull together a collection of my thinking habits into one place. This is more for my benefit than anyone else’s,
Tedder Village
It’s the ‘Villager’s‘ that make the Village.
A fusion of the Avenue and it’s Villagers – The Village Vibe – Enjoy !
www.tedderavenue.com.au
Tedder Avenue, Main Beach 4217,
Gold Coast, Queensland Australia
Tedder Village is a contemporary boutique village, nestled between the Gold Coast’s famous surf and sunbathing beaches and the excitement of the bustling Broadwater which plays host our significant water tourism opportunities, that also includes SeaWorld. The Tedder Village experience is a stunning Fusion of Beach, Food, Fashion and Active Lifestyles.
What attracted us to develop out the Tedder Avenue experience, was it’s very unique and vibrant villager type qualities. Tedder Avenue itself sets a vibrant stage to an amphitheatre of Restaurants, Cafes, Bars and multiple Resorts. Naturally this amphitheatre environment creates a very stylish and edgy lifestyle. The Tedder Villagers enjoy stunning weather almost year round without your typical winters experienced in the southern states which just adds to how investible Tedder Village really is.
A Snippet of our platform
Tedder Village is primarily a “Centralised Online Platform” that provides “Connection Experiences” that connect the Villagers to the Village Vibe, (and hub) via fast fluent mobile pathways.
The Village Model is a “Connection Experiences” platform, not an “Advertising” platform, participants must be a Villager at some level in order to connect and project their presence within the Village. Benefits of the “Connection Experiences” also flow with the Village footprint as it expands outward capturing the wider audiences from regional and international Village relationships, partnerships and friendships..
Regards Steve
steve@teddermain.com
+6141553522
What is Ride Gold Coast ?
‘Ride Gold Coast’ is all about the freedom and experience of cycling on the Gold Coast, in Queensland Australia.
The ‘Honey Pot’ for Gold Coast Cycling, with its primary role to present the big picture overview of our fantastic ‘Cycling Paradise’. We do this by collecting, Simplifying and Centralising all the fast expanding and evolving opportunities and experiences on the Gold Coast.
RGC’S top priority is to provide seamless and easy to engage pathways between the Cyclists and all the Opportunities and Experiences on offer.
What we do here at ‘Ride Gold Coast’ is fast and factual, but never at the expense of fun!
Cycling binds us as individuals, it binds us as communities, Cycling is community on wheels.
What is CycleEvents.com ?
A mobile centric online connection platform, that delivers a ‘Fast Fact’ summary on over 300 recreational cycling events throughout Australia and New Zealand.
A great pathway / matchmaker between Events & Businesses & the multiple groups, communities and individual cyclists.
Cycle Events also provide a members resource centre for soft and hard resources. Specialising in the Online Resource Space.
Services: Market Awareness – Market Campaign Infographics – Social Media Integrations – Websites, (Mobile and Pop-up) for Events and Businesses that are wanting to reach the wider ‘Active Lifestyler’ Communities and Groups.
CycleEvents also facilitates Registrations – Event Management Strategies – Problem Solving – Entries – Event Sponsors & Partnerships – Cycling Shirts, Pants, Full Kits, Socks, Caps and Bags.
Publisher of the very popular online magazine “The Pocket Rocket” which updates the latest event opportunities and experiences.
BEN NET
https://businessedgenetwork.com
A centralised information hub for the BEN Network membership. simplifying access to all its resources and inserting an uplifting and professional “Connection Experience” for BEN membership.
The BEN Net Web App provides 24/7 access and participation at your finger tips.
“Add Value or don’t do it”
Th web app elevates and leverages.
- Added Value: It’s a mobile extension of the Business Breakfast meetings.
- Added Value: Mobile at your finger tips 24/7 connection to the BEN people and their resources.
- Added Value: Mobile fully integrated Digital Biz Card to instantly share details fast and easy by email, text, messenger, What’s App & more.
The BEN NETWORK is evolving the Professional networking environment via its “Connection Experiences” pathways. Pathways that are at your finger tips 24/7, Uplifting, Fluent and Engaging.
Please ask me for an invitation
Regards Steve
0415153522
CholangioCarcinoma Australia
www.CholangioCarcinoma.com.au
A Central Resource hub
My personal Dairy/story “My Walk with Cholangio the Beast”
I am currently using my skill and experiences in connecting, to build an Australian Centric platform that better represents the patients, caregivers and health services here, with a strong connection to what is happening in other countries, please jump on and help out where you can. I have an open and sharing personality which is often tested under the extreme pressures that “Cholangio the Beast” exerts on me, but I am a fast learner and hopefully that counts for an advantage. Well thats my starting point, and I could sure use some help, please contact me on 0415153522 or steve@teddermain.com
This platform started out as a basic website to act as our library to collect and house the mounting information and resources that my wife Claire was amassing in her search to learn more about Cholangiocarcinoma. Claire’s goal was simple she was searching for more options, for my survival, no matter how slim. As the mountain grew, I decided to throw in my efforts to help her store and file this mountain, so I built a website. As things progressed it became obvious that we should share our findings, to give others a leg up and a better starting point. When Claire started her search we both could not pronounce let alone spell this long and intimidating name – Chol-angio-car-cinoma. “pronounced kol-an-gee-oh-car-sin-oh-ma”
If this platform goes the way I think it can, then many hands will connect and an Australian Cholangiocarcinoma Foundation will emerge.
My facebook link is
facebook.com/steve.holmes.965
Cheers Steve
(+61) 0415153522
Life is Evolutionary with or without me !
We are all engulfed in this constant evolution – Embrace it, I do
Life is Evolutionary with or without me !
We are all engulfed in this constant evolution – Embrace it, I do
Let’s do this again!