My Walk with Cholangio the Beast
We are all Immortal until we are not.
It was a huge shock to discover my own mortality. When the fatal like news was delivered to my ears, I instantly spiralled down into a deep dark cloud disorientated and confused beyond anything I had ever experienced. What was very odd, was I spiralled down and hit bottom and seemingly bounced momentarily back up and out of this dark place. A moment of clarity followed, as if all my remaining reserves of energy, had suddenly leapt to my defence surging to my frontal lobe – a “Matrix” type moment and a brief oasis of blue sky. In that moment I simplified and galvanised my thinking with ease, I focused if not promised myself that I will always take that next step no matter how hard, small or insignificant it may seem at the time. I developed a saying to remind me of this; “Take that next step and the one beyond that until momentum reaches out and embraces lifting me up and beyond today’s realities”.
Cholangiocarcinoma is the clinical name for Bile Duct Cancer. The easiest way to pronounce this name is to first break it in half ie Cholangio + carcinoma.
Chol – angio + car -cinoma
Mutations begin in the bile ducts, a thin tube, about 4 to 5 inches long and run from the liver to the small intestine. The major function of the bile duct is to move a fluid called bile from the liver and gallbladder to the small intestine, where it helps digest the fats in food.
- Abbreviation CC or CCA
- CC is an “Adenocarcinoma” which means a cancer that begins /mutates in the glands that line the inside of one of our organs.”
- Bile Ducts begin within the Liver, connecting the Gallbladder, Stomach, Pancreas and Duodenum.
- It is very hard to detect and there are no tests for early detection.
- Surgery is an option if detected at an early stage, but the cancer typically returns in most cases.
- No Cure
- 6.8 months average survival
- 5 year survival statistics are 5%
- 5 year Metastasis Survival: not known but less than 1 %
- Comparatives – 5 Year: Breast and Prostate 98% , Pancreatic 8%
I would like to introduce you all to Dr Matthew Burge.
Matt is the man who has rescued me from a certain demise, Matt is across all the latest developments within the GI -Gastro Intestinal environment, and has certainly developed significant experience in treating Cholangiocarcinoma patients, in what is a very fast changing environment.
My personal view is that Matt adopts a holistic overview, he listens with an open mind and importantly has a passionate and curative approach to this insidious cancer.About Dr Matthew BurgeA great article on Matt
Cancer unlocked Me
That has been surprisingly easy to answer – I found a strong resource that I didn’t realise I had – an uncomplicated Willingness to keep trying, and take the next step.
I have always carried with me a basic guide to keep me on track, and the first pillar in that guide was to be a little unrealistic often and feed the dream and look through to what can be. I guess this unwittingly gave me the freedom to see through all this cancer stuff.
I have always naturally been a willing person, and prepared to take the next step and the one beyond that until momentum embraces lifting me up and beyond where I am today – to a place where I can see and feel what can be.
It’s easy to do with practice, its a little like letting go the handle bars when riding your bike!
A saying that has stuck in my mind was “Rise and Rise again until Lambs become Lions” – Russell Crowes words as a young Robin Hood in the Movie Robin Hood !
used to . . . I Still do believe in miracles . . and it all started with a beautiful girl called Claire way back in the 70’s . . . and she is still performing miracles today . . .
Our wedding song way back in January 14th 1989 – still love it!
And yes I am doing my absolute best to reach and touch another miracle . . .
An old mate of mine once said to me . . . “Mate if you fell down a sewer you would come up with a gold watch” I’d never heard of that term before, but I am starting to understand what he was trying to tell me all those years ago. So it looks like Cancer is the big Sewer that I have fallen into, and the ‘Gold Watch’ ? well I guess it will become obvious as you read my story.
It’s taken me a long time to realise that I am a little different in how I approach things life in general. To all my mates who have been trying to tell me this for years now, all I can say to you is that YES I have actually heard you – Loud and clear – I just didn’t let on! I know it’s all affectionate stuff say!
Lets not dwell on all this male BULL stuff and let me get on with being me Willing as always to see it differently and take a more interesting route -although it seems I have not taken a wrong turn onto this cancer highway – time for me to find an exit and onto a better scenic road!
OK so there is a lot of “something” flying around here in these words, and my analogies and logic are as thick as ‘Blow Flies’ at one of Stevo’s ‘Gundy Cattle Dung Parties’ . . . Gundy = ‘Goondiwindi’ a country town full of cattle and crops. . . way out west of Brisbane Australia.
I had always thought, that if I wasn’t very successful in life at the ‘Alpha Male’ past times of Golf or Cycling, then I would love to start up my own boy band . . . Yip a band of “Soggy Bottom Boys” – a great mob of Wimpy, failed ‘Alpha Males’ who make good!. . . sorry to the girls who are reading this, as there is no room for you in this gig! . . . Ps of course I am George Clooney . . . after all this is my miracle page !
Georgia – Miracle number THREE, Claire – Miracle number ONE, and Zach Miracle number TWO
This is a video that I play to myself often, it makes me smile inside and out.
“So lets get a little happy” and smile our way into a miracle or two more . . . sounds good to me!
If I was told that had cancer and was going to die – with only so much time left to live in my salt timer of life, then I would jump out of a plane (in a parachute of course) and shock my body back into good health – and I would learn to play the guitar . . . hmmm sounds a bit out there now that I read this! I was in my early 20’s when I came up with this scenario, and now here I am in my 50’s and actually do have a terminal Cancer timeline hanging over my head.
So what do I do? I don’t jump out of a plane and I don’t learn to play the guitar. So what’s the go here you may ask? . . . the only answer I can offer at this point, is that deep down I don’t feel that it is a time for me to let go, or entertain the idea of any type of ‘Bucket List’ – That would simply be a sign that it’s all over red rover and I had chucked in the towel – thats just not going to happen, I will spend my time finding a way – I am still here and I continue to focus on sticking around and adding value, contributing to my family and friends.
I have a strong sense of responsibility to all those that invested their expertise, effort, good well, and positive karma into my full recovery . . . THANK YOU!
I have a strong sense of responsibility to repay Claire, Georgia & Zach, my amazing family . . . WOW . . . and I also have a very willing responsibility to fulfil my potential.
I feel a strong responsibility and need to share my experiences with others who maybe on, or entering a cancer journey. I can only hope with my best intentions that this “Storied Diary” helps those who choose to follow my journey as I attempt to tame and remove ‘Cholangio the Beast’ from my life.
I may not have jumped, but our daughter Georgia omitted to tell Claire & I that she was doing the shock treatment for me . . . leaping off over the Swiss Alps.
My Diary of Events
Entries are in reverse order -First entry was 15th Oct 2016
A moment in my life that came almost as suddenly as the diagnosis. Actually these words are a contradiction. . . In reality I had struggled with those days between the scan and seeing the results. I always dread those moments as I enter the office and sit down waiting for Dr Matthew Burge’s to roll up the scan images on his computer.
This is my 3rd scan and the previous 2 had delivered such joy with the “Complete Responses” that I began to stress wanting my good fortune to continue into scan 3 and beyond. What I didn’t realise was as I read the attached results was the new wording “Complete Remission” as i kept trying to verbalise it as “Response” as per my previous 2 scans -OMG OMG WOW – Tears blurred my vision as I handed this to my wife Claire OMG what next ? -what a silly thought – I began to float.
A life with cancer, particularly Cholangiocarcinoma, was like an unstoppable train wreck unfolding, it had me in an uncontrollable downward spiral . . . then becoming terminal was like being told to brace for impact, this plane is about to crash . . . and then . . . hey Steve your Liver tumors have been defeated by the Merck weapon Keytruda . . . Life is now back on the table . . . your plane is going to land safely after all . . . enjoy the ride!
Yes I am full of analogies and stories . . . as I have previously mentioned, this is how I crystalise my journey . . . Being ‘Willing’ ‘Open’ ‘Optimistic’ and ‘Evolutionary’ in my thinking style, have always been vital cogs in my wheels. Their combination generates a clean purpose and a reason to for me to smile through all this, which is a heck of a lot better than the default sole drenching frowns and fog that seems to instantly descend and capture you merely from hearing those dreadful words that you are the one who has cancer – culled from the heard in an instance.
It has been a significant grind out for our family, much like the ” Flywheel and Hedge Hog Concept” in Jim Collins book ‘Good to Great.’ I am so glad that I read Jim’s book more than once! A logic and analogy resonated from Jims book and I thought that if businesses with the cancer of just being ‘Good’ could eventually shake this off and become to ‘Great’, then this approach could work with my health . . . now as an analogy thats a stretch, i know . . . but it works for me . . . I see ‘Health and Wealth’ as two very huge components that feature highly in most everyones daily lives. . . they share similar pathways to successful outcomes.
With Mathew Burge and Keytruda in my corner, I am realistically and cautiously optimistic for my future . . . as I have previously written . . .
“If I win this battle, I will continue on, so as not to blunt my edge, or become dull to the challenge of winning. Victory will be respected, I will not fall back in my efforts, I will ensure that my strength and awareness remain sharp and at the ready, to keep ‘Cholangio the Beast’ and it’s army of tumors defeated forever.”
My Whiteboard has been wiped clean and ready for something new!
A message left on my clean whiteboard by Kev Bird after he visited me
Living life is back on the table, so what’s on the whiteboard menu? Hmmm I couldn’t ruin Kev’s artwork, so I wrote this note to myself instead.
I am lancing out the leftover thoughts that have been left behind to rattle about recklessly in my grey matter as they look for reason and logic that has moved on without them . . .redundant thoughts and reason that need release before they become a cancer in themselves.
“Bugger it’s Cancer and its real bad – Shit I am now terminal – this plane is going to crash, I am going to die – Shock News! . . . the engines have been cleaned out and restarted – the tumors have gone, this plane is going to land – I am going to Live . . . Now how is a guy supposed to make plans in such a topsy turvy world? . . . hmmm, don’t waste any time on that one Steve, just blow this hotdog stand and get the hell out of dodge with what you’ve got . . . Come on Steve, get your A into G and get moving, get engaged and let your mind catch up along the way . . . at least I hope this works? Getting started is the hard, there are no guarantees or promises but get up unconditionally – take that next step anyway! A blind leap of faith but that means momentum and momentum is life.”
What have I learn’t or think I have learnt from all this ?
I am more deliberate and a little more spontaneous . . . so what am I going to write on my clean whiteboard? . . .
- Tick Tiny Goals and Walk on Water.
- Be a little unrealistic often – It feeds my Dreams and Visions
- Focus on and Doo one thing at a time -it keeps it simple and effective
- Be Remarkable at it
- Be Resourceful with it
- Add Value to it or don’t do it – this keeps me global and aware.
The further I travel in life the more I collect along the way. The more I collect the more I need to manage how to carry or assimilate what I collect, But what becomes clear is the less luxury I have left for unplanned thought!
Thats my whiteboard for now and exit and an entry to a clean slate . . . no bucket list stuff for me . . . there is a lot more I could add to my whiteboard, but in the interests of doing things ‘one at a time’, and keeping it all really simple on my grey matter, this is all I am prepared to write at this time.
The Capacity to Move & Engage
Over the past few scans and X-rays I have had fluid on my lungs, which could have been the precursor to more tumors, but fortunately now they have reduced to a thickening around the edge – could be scar tissue but I am not sure on that . . . it does cause shortening or constriction of my lungs when exercising.
Getting back into life for me, means getting back into cycling and running . . . yes I know some of you reading this will think I am bonkers, but hey thats me!
My riding and running is down-right ugly ATM, and I have to put my weakness aside and do it anyway . . . Actually I expected a few digs from my buddies, but no one has . . . instead I have had numerous people lending me a hand spurring me along . . . its has been very humbling . . .
My goals! (yes I do have some other goals) . . . Get back and ride . . . ride the 101km’s from the Gold Coast to Byron Bay on November 30th, and also run the 11km circuit along ‘TheSpit’ . . . not on the same day – (see ‘The Spit’ pic below)
The Chemosabies . . . My eclectic bunch of misfit friends . . . and I wouldn’t have it any other way!
To Stevo the farmer boy from Gundy, Kev, Mark, Jason, Lawrence, Kylie, Debs, Willy, Campbell, Andrew, Ev, Bev, Wazza, Steph, Knud, another Kev, and my very loyal mate the Scottish Kiwi oddity John Adair . . . and many more (you know who you are) . . . WOW . . . A HUGE THANK YOU . . . It has made way more than a difference that you have all turned out to tow me, push me, prod me, tell me bad jokes and generally made all-round ass’s of yourselves, in a bid to keep me moving forward and above water . . . It’s been a blast to really see what’s under your hoods . . . to think that I thought I really knew you guys . . . WOW ! . . . Now I really really know how nuts you all are . . . Ha…now you all have to reap the rewards of your hard labour and endure me for a lot longer!!
Without question you are all top quality human beings . . . Claire and I are very lucky to have you as friends!
So why am I sharing all this with you? I am writing my journey down so I can remember how I felt along the way, something for my children to look back on, and I also feel that sharing my thoughts here is therapeutic and provides an air of accountability, so tag along with me, I would really enjoy the company.
The Spit’ – For all those who do not know is a magical finger of land that divides the Gold Coast’s Broadwater from the crystal blue ocean that the GC is so famous for.
The Buildings at the top of the pic is Main Beach, where Claire I live, the hills in the back ground roll over the border into New South Wales and this is where I used to ride ( and will again). The green strip on the left of the Pic is called ‘The Spit’ which runs from Main Beach past Seaworld (on the right) and down to the Seaway (out of shot) . . . Now you can see why I love to ride and run here on the GC . . . My goal is to be back amongst the hundreds of other ‘Active Lifestylers’ / nutters that enjoy this very unique freedom 7 days per week . . . to be part of all this is a huge incentive and boost.
Zach having some time out from Dad, at the Seaway at the end of ‘The Spit’ Main Beach
October 6th 2017:
My CT Scans were done yesterday and now it’s time to execute my version of “ProActive Patience” and waiting it out until Tuesday, when I meet with Mathew Burge to review my scans…hmmm what better distraction than jumping back on the Carbon Ferrari for the first ride of 2017… Yes I am finally back on the bike, a 25 km ride from Main Beach to Burleigh, along the crystal blue coastline of our magnificent Gold Coast… WOW the freedom, I was just like a kid at Christmas…what a fantastic liberating feeling. A big slice of normality had returned, and I exceeded my expectations in hanging in there on Kev’s wheel…what a bonus!
Many thanks to Keith and Jason from Jakazni along with my great friend Kev…
My huge appreciation for their generosity and time to get me across the line…Plus coffee…I am almost a real cyclist once again. (Centre of Pic)
“Where do I start? . . . A Complete shock”
My first Keytruda Scan results are in after 3 months and 3 Keytruda infusions.
Claire and I met with Mathew Burge my Oncologist at 10:30am after what I would have to say is an agonising “Betwixt and Between” lead up until this moment, I was desperate for some good news but absolutely petrified that I would get yet again more bad news. I had lots of reasons to believe it could be good as I had improved out of sight since the second infusion. I have recently started cycling again and have just shuffled out a 4 km run, none of this was possible until a few weeks ago.
Matt began by showing Claire and I the August 2nd scan which Claire had not seen, and I must say that the tumour in the centre was bigger than I remembered and there were 6 more on top of my liver just under the ribs . . . this just didn’t seem like a good day. Then Matt with his best poker face on, brought up my latest scan from October 5th and I looked at the scan image on Matts screen, and I looked again . . . Where are the tumours Matt? . . . Matts response: “Thats just it Steve, there aren’t any! you have had a complete response” What does that mean I asked? . . . Matt replied: “You don’t have any tumours or evidence of cancer Steve” . . . My reply sounded like a stuck record . . . Yes but what does that mean ? . . . “Go out and celebrate Steve they have gone”
To describe my response I / we were shocked . . . a huge shock, actually this was a bigger shock than when I realised I was terminal with less than 12 months to live. My best expectations going into this meeting, was to be told that the tumour growth had stopped, and was showing some signs of shrinkage . . . but WOW . . . this was really hitting the ball out of the park at my first swing at the ball. I think Matt who was confident, was also a bit stunned as well, but of course Matt had, had a couple of hours to prepare his best poker face . . . Claire and I just looked at each other, all welled up with tears and no words. I tried hard to thank Matt, but I just couldn’t find words that showed enough appreciation . . . Mathew Burge you saved my life . . . Thanks Matt . . . and yes Matt I know that I have to continue to show clear scan results over the next 2 scans, to really be confident of this result, but for today this is how I feel . . . Thank you, Thank You, Thank You. See Matts Challenge
Yip I was Shocked, Stunned and Numb . . . which was followed by a slow creep, of a new realisation . . . a new day has dawned and the sun is warm, the sky is a brilliant blue and the ocean is a beautiful smooth crystal blue . . . it’s as if I am seeing it all for the first time.
Now you might be thinking “Steve don’t get ahead of yourself here as ‘Cholangio the Beast’ is tricky and cruel” and yes I am totally with you on that . . . I am very aware that I can never drop my guard, but for now I have regained control, and that has to be a great thing moving forward. Mathew did explain to me, that he did not know how durable this result would be, and the next 2 scans will hopefully add confidence to my current results, but for now this is an exceptional result to enjoy. Looking forward . . . I will continue to carry on as I have, and live a sensible well balanced lifestyle, in the hope that “Cholangio the Beast” has left the building and that my story and journey can in some way inspire and help others who are battling this terrible diagnosis.
CT Scan Report – “Complete Response”
August 2nd Scan showed 7 Tumours
Todays scan shows NO TUMOURS
I now have a brand new outlook!
More sunny days ahead for Claire and I . . . long may they continue . . . Thank you to everyone in our lives and a special massive thanks to Mathew Burge (Oncologist)
I now have the new challenge, a balancing act in living with the success of today and living with the knowledge that cancer potentially lies hiding in my shadows . . . it is my biggest hope that “Cholangio the Beast’ has left my body for good. I will do my absolute very best to honour this victory, to live a life that reflects my potential and appreciation to all including, the company who developed Keytruda (Merk) and the Australian Government who have invested so heavily into this result.
All the best for now to all my Friends, Family and Readers . . .
Ps. the canvas painting below was a painting hanging on display in the Joyce Tweddle building, which Claire and I passed as we made our way up to my big scan result meeting with Matt . . . and it caught my eye again as we were leaving to go home . . . I wanted something to remember this very special day, and this bold bright canvas filled me with sunny thoughts! It was painted by a patient of ‘Mental Health’
9:30am Thursday October 5th:
My CT Scan day, this is one of those betwixt and between moments in life…
I have been looking forward to getting this scan completed, but the closer I got to the day, the more scared I became. I really wanted this done, but I was scared to think about the results the scan may produce, as the last 2 scans provided images of new tumours on the top of my liver, which explained the severe rib and shoulder pain. It was hard to breath, and lying on my side was impossible, as was doing up my shoe laces. Mathew Burge my Oncologist said this was because the tumours were causing this. But the pain fully disappeared 3 days after my first keytruda transfusion, leaving me with a confidence that if the tumours were growing and creating pain, then my basic logic of thought was, if the pain has gone, could I dare to believe that the tumours were shrinking? could it happen that fast? Well now is that day to find out, but of course the results will not be available to me until next Tuesday 10th October when I sit down with Matt prior to my next infusion…such is life… back to the my proactive waiting game…I just have to keep my mind busy on other more exciting stuff in my life….Just relax ha ha …Conservatively optimistic sounds good on the one hand, but I am still edgy and nervous on the other. I don’t want to get ahead of myself on this one, especially since I am now feeling the best I have been in 12 months and have regained some fitness, which I am absolutely loving.
My third infusion of Keytruda
Claire and I met Adam and his wife Sarah from McKay (Northern QLD) today, Adam is similar to me but has been on the trial for just over one year now. Adam who was also terminal had 4 tumours (Lung, liver, Stomach & I think Kidney) is now cancer free as of August 2017. It was very exciting to meet and listen to someone else’s journey… Adam is so different to me as a person and approached (and reacted) entirely differently to this whole cancer nightmare to how I did.
I learned so much from listening and talking with Adam and Sarah, it was as if we were in the same club and at times we didn’t need words to understand each other…bloody weird but a really uplifting experience.
Hello Keytruda… Do I believe in a ‘Hail-Mary Pass’ to save me at end of the 1st half in my game of life? …yes this is most definitely a game of 2 halves, and yes that means I expect to live to 114!
August 8th 2017:
First Keytruda Infusion…wow what an improvement I now only spend 1hr in the chair
August 11th 2017:
Severe rib and shoulder pain magically disappears 3 days after my first Keytruda infusion, it was hard to believe that it just disappeared…what could this mean? You can imagine what I was thinking…If the tumours are growing and creating more pain, then if the pain was gone…dare I think this, but convenient hopeful logic in my mind says the tumours could be shrinking…but could this happen so fast, after just one infusion? where to put my mind?…I did not want to get my hopes up to high as it will all come down to what the scan shows! Cautious optimism also seems to hopeful, but it is the best way of describing how I felt, but it will be my first Keytruda trial CT scan on the 5th October that will determine this.
I will try to put all this hopeful thinking out of my mind until scan day. This time I am going to take Claire into the scan room to hold my hand…so much is riding on this result…I will also demand that “Vu” the radiologist take great pictures this time!!!
August 12th 2017:
I became very very sick…very itchy chest cough, severe night sweats, temperature spikes, extremely weak and light headed, breathing was difficult and I was unable to function at all, I was lying on the couch for 12 hours at a time, feeling as though this was my end.
At my absolute lowest point out of the blue all the way from London our son Zach surprises me and arrives home…I had no words through my tears as he appeared out of nowhere in front of me…I couldn’t even stand up to give him a cuddle. Zach was equally surprised at my weakness and decline physically, but really it didn’t matter in that moment…what a huge motivational shock, I had only just spoken with our daughter Georgia (also in London)..she never let on of the impending surprise visit. To describe Zach’s timing as great is an understatement, he literally caught me from falling and giving up…it had all got to hard and I felt at that moment just before he surprised me as if this was it, I cannot keep going…hmmm yip, life certainly does not move in straight lines and this was for the first time in a very long time, was something amazing to happen to us and interrupt all the continual and relentless bad stuff…Zach stayed for 7 days and took over the nursing duties from his Mum…He laid on the bed next to me and held my hand, told me of his adventures, spun a few jokes to get a rise out of me…for me I just lay there fairly motionless but every now and again I would sit or stand…just to keep everyone on their toes (so to speak)….A huge irony was that last time I had seen Zach I was in ICU and not in good shape and here we were 7 or 8 months later and I am stil not in great shape…but I swear the very next day after he left to go back to London, my recovery began.
Zach back in London & fast becoming the competent chef… makes a Dad smile
Claire booked an unscheduled appointment with Matt out of concern with my decline/reaction to the first treatment.
Matt my oncologist said it maybe a war going on between my immune and the tumors or it may not be the side affects at all, it could be that I had contracted a virus that was doing the rounds. Matt said that we will know more after my 2nd infusion to see if this pattern continued.
Approaching my 2nd infusion I was feeling a lot better with no further problems, so we were all focused on how I would behave post the 2nd infusion of Keytruda…Nothing at all everything was good, in fact I was becoming stronger with every new day…I was finally off the couch and beginning to function as a normal person… amazing as I hadn’t felt this good in 12 months.
“Keytruda has been approved for patients with metastatic, microsatellite instability-high (MSI-H) or mismatch repair deficient (dMMR) solid tumors that have progressed following prior treatment”
The 1 hr Keytruda infusions are far more simple than the 5 hr Chemo Infusions, and the side effects (apart from my 1st infusion) are minimal compared to the debilitating chemo side effects.
What is Keytruda
Mathew Burge (My Oncologist) is conducting a new trial with the drug Keytruda, which had proven results with Melanoma and Lung cancer patients over the past 4 years. The Keytruda trial was now made available for a basket of rare cancers such as Cholangiocarcinoma. Mathew said that I met all the criteria to qualify for the trial. My tumours cell mutation is classified ‘MSI High’ which represents 5% of tumours and the balance are MSI Low which accounts for 95% and are excluded from this trial. Link to Merk Trials page
What does Keytruda do?
In my basic understanding, Keytruda exposes the cancer cells (de-cloaks the tumor) so that my immune system can see the tumors. My Immune system then does what it is supposed to do and eradicates the foreign mutant cancer cells.
In my simplest understanding, the reason that the cholangiocarcinoma continues to grow, is because my immune system for what ever reason cannot see the cloaked mutated cancer cells and Keytruda acts to make these mutant cells visible.
View Channel 9’s 60 minute Doco on ‘Patient 71’
Not Keytruda or Cholangiocarcinoma but a similar drug and aggressive cancer…great insight…
“Our hypothesis,” says Dr. Rosenberg, “is that immunotherapies work because they target unique mutations in that person’s cancer.”
“Cholangio the Beast’ has beaten a path to my liver and established 2 Tumors on my “right lobe” tucked under my ribs. Just one week short of completing my 6 month Gem/Cis Chemo trial, a scan has revealed what know one wants to face…hmmm this is not good…very scary and dark.
Then Cholangio the Beast strikes again…yes more Tumors…
Just 4 weeks later a second scan reveals several more tumours on top of my liver.
A severe Rib and Shoulder pain on my right side has been building up over the past 4 to 5 weeks. I am finding it very difficult, with continuos stabbing pains, making it hard to breath deeply or bend over to tie my shoe laces. Sleeping is becoming a big problem as I cannot lay on my side and I am becoming more worn down. Mathew says this is because the position of my tumours.
I have now progressed into the unenviable club of being “Terminal with less than 12 months” left in my game of life. Dumb struck comes to mind, but really I was not entirely surprised, nor did I let this experience be any more than just words on paper, this is just another twist, another emotional and mental hurdle to overcome. I first and foremost have a responsibility to my family, to be the best I can possibly be to shed a light a “Go Forward” attitude, so that Claire, Georgia and Zach can be the best they can be, given the circumstances.
So what’s next? this has been my continuos catch cry…”What’s next, what can we do now?” but of course Mathew Burge had always had Keytruda up his sleeve, and he was now ready to play this card…so papers are drawn up…OK Matt where do I sign! and then my samples were on their way to California for confirmation…
I have to say at this point, it is of huge significance to me that people like Matthew as an Oncologist really care about their patients and their outcomes… It also helped that Mathew is also a very keen cyclist like myself, so discussing something else beside cancer is fresh air and motivating.
My 5 Year German Trial begins
Oncologist: Dr Matthew Burge
Royal Brisbane and Womens Hospital.
Trial begins with 6 months Chemotherapy
Gemcitabine & Cisplatin
As I approached this start date for the trial, I still had the excessively high ‘Bilirubin’ levels that needed to come down from the mid 200 range to below 100 before I could commence the trial. Thankfully I managed to sneak below the 100 mark to 97.
Infusions typically 5hrs on Tuesdays with every 3rd Tuesday off.
My (our) Tuesday is an all day affair. We leave home at 6:30am, Blood Tests at 9am, check in to Oncology at 10am, Oncology Appointment with Matt at 10:40am, Chemo starts at 11:30am, Chemo completion 4:30pm and home between 6:00pm -6:30pm.
My very first day…
How lucky am I
How lucky am I
At my first post operative review my surgeons explained that Chemo and Radiation were not viable post operative solutions, but they had been doing some research and asked me to consider a new trial out of Germany that was now being made available in Australia. I jumped at the opportunity and said yes I would like to be considered. So after careful consideration I proceeded with being tested and qualifying for the trial suitability. I was green lighted and it was all systems go. The trial provided a random selection process which placed me on the Chemo side of the trial versus the Placebo.
This trial was in it’s third year, with Australia now committing to fund 50 participants. I was the very first participant in Australia and one of 300 world wide. . . I was crossing all my fingers, toes and everything else in-between, that I was to be part of a very successful trial outcome, unfortunately for me this was not to be the case.
On meeting Matt
Prior to commencing with the trial, I had to meet with Matt so he could give me the once over for suitability . . . Our daughter Georgia drove us from the Gold Coast to Brisbane (about an hours drive), this is where I learn’t that if Georgia could have made a great rally driver . . . she certainly knows how to throw that car around!
Arriving at RB&WH and walking in for the first time was daunting as it was a much larger and older building than what i had grown accustom to on the Gold Coast. I took Claire and Georgia with me to meet Matt and his Trial Nurse Erin . . . It was a little bit tense at first as you would expect, but I broke the ice by asking Matt . . . “Matt do you Cycle?” . . . Matt replied actually I do Steve . . . and right at that moment I could hear a sigh of disgust from Georgia who was sitting just behind me . . . hmmm I knew this was not good sign, I was in trouble for straying off into some random topic with a person (Matt) that I had only just met . . . but more on that later. Actually Erin jumped into the conversation and added to Matts modest comment . . . “He sure does . . . 6 days a week!” . . . Matt blushed slightly as he gently smiled, and I also matched the smile . . . Aha I have a kindred spirit a fellow cyclist . . . a brother in the brother-hood . . . . and here he was an expert Gastro Intestinal man “to boot” . . . things were looking up and the tension disappeared.
Matt made a strong point to me that this was a very rare cancer and that he and his team specialised in this type of cancer. He also said that other hospitals, and oncologists may or may not have heard of Cholangiocarcinoma, and further still may not have ever dealt with it . . . I was in the beast place to deal with this challenge. My confidence continued to climb, but as with everything, Matt grounded me, by saying whilst that I was in the best place to deal with this, they actually didn’t know that much about Cholangiocarcinoma as it was rare and had very poor outcomes, hence the trial . . . Yes I had sobered up quickly on that point. But I still walked out from that meeting with confidence that I was indeed in the right hands, with Matt and Erin.
Now back in the car driving home, Georgia let me have it . . . she had a crack at me for being so flippant and casual . . . what do you mean I said?…Dad I cannot believe that everywhere you go you seem to ask people / randoms if they ride a bike… Dad this is serious stuff and all you can think to talk about is cycling, I cannot believe it! . . . Well I tried to explain to her that life is a bit like that, and we all need to have positive distractions and common interests even if we are dealing with the big bad cancer stuff . . . a little levity goes a long way . . . hmmm we begged to differ on that point, and I don’t think she spoke to me most of the way home . . .
After that day, Matt and I would always start our meetings with a little cycling catchup or banter, and then we moved to the matters at hand, the Cholangiocarcinoma stuff . . . For me the Cycling chit chat and banter has always been a zap of fresh air into my cancer world . . . thank you heaps Matt . . . and Matt you can be sure I will find your wheel, one day when you least expect it . . . who knows, I might even show you my wheel . . . Now that would be a big surprise, from where I am at at the moment . . . For all those who do not understand the cycling lingo . . . “Finding a wheel” is to come up behind a rider who is in front of you and sit in their slip stream . . . Showing you my wheel” is to move in front of another rider and give them a tow in your slip stream, or leave them for dust! . . . Clear as mud isn’t it!
Warning Graphic photos below:
January 5th 2017: Aneurysm: A potential side-affect of the “Whipples Procedure”
Early signs was via my Vacpac filling with blood, we were unaware of what this actually meant at the time.
My wife Claire removed the Vacpac Machine (not pictured) and the connecting tube, then she removed all the clear vacuum sealing and external clots as the Vacpac could not function with this.
Approximately 3 hrs after this photo I passed out (unconscious) and began to vomit up a lot of blood.
Claire put me into recovery position, and called the ambulance. When I became conscious at the hospital, I was stabilised for a short time and Claire and our daughter Georgia were sent home to rest, but a short time after they left, this ‘Richard-Gere-looking-character’ – Dr Tom Snow -Oakley glasses and all (probably standard hospital issue) seemed to burst into this surgical type room that I was in, with about 20 people in tow, said as straight as an arrow…”You have a hole in your main hepatic artery and we are going to operate NOW!” Within 1 minute of this I began to projectile vomit blood up in a volcanic hot lava like style…I think 3 times and I also think someone said later that I vomited up over half my blood right there and then. All I can remember at that point was watching the expressions on all the doctors and nurses faces as they turned sullen and grey …two of them grabbed me and pulled my shoulders over the pillow and placed an oxygen mask over my nose and mouth…and then I woke up 2 days later…it was easy as that!
Emergency operation at Gold Coast University Hospital
Surgeon: Tom Snow (interventionist Radiologist)
I was told that if Tom had not been present at the hospital at the time of my admittance, then I would not have survived
5 Days in ICU
2 Days Surgical Ward
The Vacpac that had been attached to me for about a month was there to extract all the yucky stuff out of the infections (like crater lakes) that had formed on my stitching, but as you can see from the photos an Aneurysm was underway to which Claire and I were totally oblivious, but we knew something wasn’t right.
The blood, and there was a lot of it as you can see, was not supposed to be there.
Claire was turning into quite the accomplished nurse and in the absence of a real nurse, to remove the liver-sized and now solid blood mass.
The operation was a success in removing the tumour and ‘Cholangio the Beast”‘ who had begun it’s march toward my unsuspecting Liver. The surgeons also celebrated after 5 days that they had indeed met all critical “clear negative margins”. However the surgeons cautioned me that ‘Cholangio the Beast’ is resilient and of very rare character and moved me into this ‘yellow card’ sin bin zone, a 2 year time out zone where only 20% of the yellow carders survive, the rest somehow get ‘red carded’ and are redirected to the after life. (Yellow Cards are my Kiwi Rugby analogy).
Although the operation was a success it was explained to me that I remained high risk, this is where I began to realise the severity of ‘Cholangio the Beast‘ and just how rare and deadly it was. High risk meant that there was an 80% chance of it re-emerging…hmmm it’s starting to sink in. The surgeon Dr Kwong explained to me that chemo or radiation were not options for me, however he had done some research and felt the the German Gem/Cis trial was a potential option for me. Kwong arranged the connection to Mathew Burge at Royal Brisbane & Women’s Hospital who were handling the Australian end….I agreed to proceed straight away.
A scary place to find yourself…is this a challenge to far?
Operations Shopping list
- Head of Pancreas
- 3/4 of my Stomach
- my Duodenum,
- Bile Duct including the tumor
- 2 lymph Nodes
- Gall Bladder.
Day 1 – 1.5 hrs Anaesthetist preparation + 9.5 – 10 hrs of surgery
Day 2 – I sat up and walked assisted by 2 wards men and a walking frame
My ICU stay was for 6 days, fully supported by a 24hr bedside nurse.
Day 6 – I was moved to the surgical ward for further 6 days.
Total hospital stay was 12 days versus the 4 weeks that were booked for me.
11th November 2016: We met with one of Harold Puhala’s team (Suzanne) who confirmed bile duct cancer and offered me a Whipple’s procedure as a way forward.
17th November 2016: We met with Dr Harold Puhala (Head Surgeon) for a full Whipple consultation and confirmation of times, risks etc. Harold also explained the need to secure 10 days ICU bed availability confirmed before his team of 7 surgeons could perform the Whipple operation.
Dr Harold Puhala had been recommend as the best surgeon to carry out this next stage. I cannot remember the exact process of how we chose surgeons, but Dr Catherine Hughes at Tedder Avenue Medical Practice was wonderful at keeping us and our thinking on track, and can take most of the credit for our decision to go with Harold.
Gold Coast University Hospital:
A Morning procedure to investigate blockage, take biopsy and insert temporary stent to restore bile flow around blockage, address yellowing and itching symptoms.
The op requires a small prep session… dress up in a bit of hospital fashion, a couple of injections and a port inserted for the sleep potion, which they administer once you have been wheeled into the operating room where they positioned me on your left side…then it’s count to 10 and good night nurse!
The surgeon then inserts a breather and tube down through the throat which is then used to place a Stent to bypass blockage and restore my bile flow and extract a biopsy sample of the stricture.
When I woke the recovery room, Michael Murray the surgeon stopped in to update me (although I was still very groggy). Michael said to me that he didn’t know if it was a cancer or not, but confirmed it was a 25mm Stricture (mass/tumour) and he recommended that either way, it would be best to remove it immediately. I was now a little more than mildly concerned.
About a week later the biopsy result was in and confirmed that it as positive for cancer. Hmmm what does this all mean?
15th October 2016: I was on my normal easy Saturday morning bike ride and began to feel unwell on bike ride… I felt like vomiting
21st – 23rd October: My stool colour changed to a pale/clay/white – Yellowing tinge in my eyes. I felt unwell. Beginning to itch.
24th October: The Doctor’s appointment with Dr Cathy Hughes of Tedder Ave Medical Practice. Cathy was very good at getting to the point and explained that I may have a blockage of some sort and needed a blood test, which she carried out herself in the surgery. (Thank you Cathy for being so efficient)
26th October 2016: Phone message from Dr Cathy: My blood test results indicated swollen Liver markers, and very high level of Bilirubin (over 200) Cathy said that this needed urgent attention, starting with an Ultrasound.
31 October 2016: Ultrasound then CT Scan:
The ultrasound was carried out and caused some concern, so I was asked if I could stay on and have a CT Scan, which I agreed to.
1st November 2016: Scan results confirm a small stricture. Also I now had a lot more yellowing of eyes and skin, with severe skin itching
“In Cycling lingo . . . I had slipped out the back door, dropped by the bunch . . . I was on my own, hoping someone would notice & drop back to wheel me back up to the bunch . . . what a shock, they all dropped back to take turns to wheel & tow me back up over this very steep, difficult climb for my life . . . humbling stuff . . . aren’t cyclists wonderful human beings! A massive kudos to you all . . . Steve”
My Psychological dump section
I needed somewhere to express myself and also to just dump all my random, and scary thoughts. These thoughts seemed initially to come in overwhelming avalanches, but the more I wrote the more control I gained over my thinking. A good mate actually urged me to do this, don’t worry about the logic or order just get it down and organise it all later. I did create random chapters to house my thoughts to reflect some sort of order, yes this has been an effort, but also an amazing healing place. As I progressed the ramblings began to become more ordered and simplified, it created clarity out of mayhem.
How it all began
It all started on my bike in mid October 2016, riding with a couple of mates, Jason and Kev. I hadn’t been doing much riding at the time and this was just a cruise down along the crystal blue stretch of coastline that the Gold Coast is so famous for. I decided to just tucked in behind Kev and Jason where I expected to enjoy a nice little tow, but my stomach was not happy and I began to feel like I would vomit…hmm I do not like to vomit, so I made a few noises to Jason to slow down a bit, I didn’t want to sound to whimpy because cyclists are tough! It was an easy 40km ride on the flat …so easy peasy stuff, finishing at our favourite coffee haunt. (Hard Coffee on Tedder Avenue Main Beach) BUT my mandatory post ride coffee and bull session, had to be cut short and I headed home to lie down. I felt very lethargic and absolutely buggered, as if I had just cycled 140 km’s over hills.
After a week of on and off again stomach discomfort, I noticed that my bowel movements became very pale/white and with close inspection, my eyes were slightly yellowish. I mentioned this to my wife Claire, and she hit the google machine and concluded a possible liver problem. So with that Claire booked an appointment with our local doctor for the following Monday morning…by this time it had been 9 days since the Saturday bike ride.
My Doctor (Cathy Hughes) was unalarmed, but she was efficient and took blood tests immediately. The blood results came back confirming swollen liver markers, so we booked an ultra sound immediately (I think the next day) so we kept the wheels turning.
At the Ultrasound they must have been concerned about something, as they mentioned how small and unclear the imaging was and said that they had a spot available for a CT Scan if I wished to wait longer. I said yes I would be happy to wait.
The CT Scan results came back after a few days confirming a blockage (stricture) of about 25mm in length in my Common Bile Duct just below the Gall Bladder. Doctor Catherine expressed to me that this was most probably a gallstone or similar type blockage of the bile duct which prevents bile moving through to my stomach, and the yellowing and itching is a result of the build up of Bilirubin in my blood. I will now need to book an ‘Endoscopy’ procedure to investigate further and probably insert a stent to bypass the blockage and restore my bile flow. This actually didn’t sound to bad to me, actually a minor inconvenience if it meant that I could stop this increasingly frustrating itching and remove the now obvious “Tele Tubby” yellowing of my skin.
Yellowing, sky-rocketing ‘Bilirubin’ levels and itching …pushing me to the edge of sanity…
I continued to become very yellow, it spread everywhere, but with the increase in my jaundice, I was now experiencing an escalation of my itching, it was 24/7, simply inhumane, and no medication that could alleviate this. I was now alternating Cold and Hot baths all day and night, with the relief only while I remained in the bath, and that is a mission to stay awake in a bath at 3am…within 5 minutes out of the bath I was again consumed… The only relief in sight was to place a Stent in the bile duct to divert the bile flow around the blockage. So an ‘Endoscopy’ procedure was booked in, but in the mean time anywhere there was skin I was under constant attack, I was scratching myself into massive spots and sores. This procedure couldn’t come fast enough, I was getting no sleep and my psychology and ability to cope was sinking as fast as my weight.
With my son Zach…you can see how yellow I was.
Cancer Stage 2 – Cholangiocarcinoma, it’s rare and aggressive…
But I have never heard of this cancer, and I can’t even pronounce it…its a small tumor, so how bad can it be?
We are in a consultation room at Gold Coast University Hospital meeting with Suzzane who is on Harold Puhala’s surgical team.
This news, a diagnosis thundered in and then hit me like an avalanche, tossing my mind into nowhere, and nothingness, it coursed through my body at a speed I had never felt before. I lost my mental and physical orientations in that moment of total surrender, I am nothing, I feel nothing, I am blank, yet I am still here. I begin to feel, I begin to think, I could hear Suzzane’s voice slowly coming back into focus. I was seated starring at the floor…my eyes lifted and reached Claire’s eyes, who were searching for mine… softly in the middle our eyes connected, Claire’s eyes were frightened and welled up with despair, and without any words being spoken we decided in that moment that a new journey, a big challenge had just begun and we would do what we had to.
I was still alive, I was still cognitive, and I could now more clearly hear Suzzane speaking… so Suzzane where to from here? …the new word was ‘Whipples’ as a way forward…actually it was the only way forward for me. I now began to comprehend this harmless sounding word…a name for an operational procedure and its real significance… a tiny little cancer was in fact deadly and aggressive…I remember beginning to tune out at this point and all of Suzzane’s words became a mush…a fog of noise…I just needed to stand up and dust myself off, I cannot remember how we ended this meeting, but I do remember Claire and I walking like robots to my next appointments waiting room…Claire needed to go the toilet to have her own private space … for me it was all about making a another step forward in my mind, stepping forward without negotiation…I had to just focus only on my next appointment…nothing else. I cannot even remember what the appointment was for, I should have written it down. A very strong memory of this day was the need to breath, to break free of the hospital grip, and as we made our way back to the hospital car park, my pace quickened …almost to a run…I had a sudden need to get inside the car as fast as possible…as soon as the car door closed on me, I broke down, it came from somewhere deep inside of me …Claire was the same …there we were both of us balling our eyes out inside the car in a public car park with streams of people walking past… not a place we ever thought we would be, an experience beyond words, but like everything this moment ended… we dried our eyes and Claire drove us home…It was a bright and sunny day which must have helped kick us back into gear, as we found ourselves breaking the uncomfortable silence chatting and laughing all the way home…but there was an undertow at play… we were building a new foundation for an unknown challenge that lay ahead…We would be ready and we would be adaptable.
‘Cholangio the Beast‘ is unfortunately something that I know all too well, as my younger brother Graeme, engaged in a head on battle with ‘Cholangio the Beast’, yes that is two siblings with a non heredity and very very rare cancer, located in almost the exact same spot in the Common Bile Duct. Graeme bless his cotton socks, amongst his many other quirky brotherly traits, got ‘red carded’ just shy of completing his 2 year ‘yellow card’ time out… hmmm, yes at 52 years old and 2 years after his successful operation, ‘Cholangio the Beast’ took my brothers liver… I have plenty to contemplate when walking with ‘Cholangio the Beast’.
From Left to Right;
Steve, Graeme, Gaylene, Denise
A family with great longevity in forbearers going back generations and Grandparents living into late 80’s and 90’s …what happened? Although our paternal Grandmother on our Dad’s side died of Breast Cancer when my Dad was 11 years old.
Steve – Cholangiocarcinoma
Graeme – Cholangiocarcinoma RIP 2014
Gaylene – Aggressive Breast Cancer
Denise – Crohn’s Disease
Cherie (not pictured) – Cervical Cancer
5 Siblings 5 big problems ? go figure that puzzle
It was approximately 6 weeks from Symptoms to Surgery, and this may actually play out to be a critical factor in my survival outcomes.
December 8th 2016 a major date in my life, with a 10 hr surgery in front of me…think about that, a bunch of surgeons standing over you for what seems an insane about of time.
Looking back at all this now, I realise just how very time critical everything was, and I am extremely grateful to Dr Cathy Hughes, Harold Puhala and his team and the whole Gold Coast Health Community for being so proactive and curative in their culture, it is a ‘Culture and Direction’ that instilled a lot of confidence… long may this culture continue, it is impressive.
A scary place to find yourself…is this a challenge to far?
Day 1 – 1.5 hrs Anaesthetist preparation + 9.5 – 10 hrs of surgery. I Woke up in ICU with massive pain throughout my whole torso, I couldn’t even move my eyes without pain, this was pain beyond imagination.
Day 2 – 2 ‘Wards-men’ came to my room and said they had been instructed by my surgical team to sit me up in a chair. I looked at them as they towered over me like to smiling hitmen…now I should say at this point, prior to the op Harold had told me that he wanted me on my feet by day 2 post surgery and I was absolutely willing and keen to oblige…but now, experiencing all this debilitating pain…hmmm my answer to the wards-men was no way, no way, no way…you ain’t moving me anywhere. We now had a standoff, they were big and intimidating and I was letting the pain do the talking…they eventually persuaded me to give it a go and that they were very experienced in these maneuver’s, and not to worry. So on with show, with me playing the part of “the Wimp”!!! and them …the smiling assassins. With the walking frame near the bed and the bed raised very slowly into the near sitting position, these 2 guys weaved their magic, and there I was standing in this frame…WOW not so bad after all…can I walk a bit, I asked them? …what an amazing feeling… I really am alive. After walking further than they expected I was then seated next to the bed. After about 5 minutes sitting my wife Claire was allowed to visit me…I must have looked like the cat who got the cream when she walked in as I was so proud to be out of bed, showing mobility. Claire and I sat there and talked about stuff…can’t remember what, but it was all smily and good, but there was a catch…this sitting stuff was bloody hard work, and I started struggling to remain seated..it seemed much harder than walking…so it was back to bed for me after about 20 mins.
Day 6 – The ‘Wards-men’ are back and I am doing very well…time to move me out of ICU. I was now being wheeled down a couple of levels to the surgical ward for a further 6 days, in the GC’s Hotel Hilton, where I developed routines of consistently walking the hallways to help build me back up and get home.
My total hospital stay was 12 days versus the 4 weeks that were booked for me.
Pictured Day 9 post surgery – L shaped surgical wounds showing external stitching.
I unfortunately developed 3 bad infections within the stitching and required many weeks of an attached portable ‘Vacpac’ machine connected to my stomach to remove the continuos fluid flow from the infections. This was both inconvenient and limited my mobility and painful…but thats just the rub of the green and you have to roll with the punches (so to speak)
Whipples? …hmmm when I first heard this term, it sounded a lot like a harmless ice cream flavour.
How significant is this op?…VERY!
This is one of the hospitals largest operational procedures with a lot of risk to sign off on.
An operation in itself, I spent what seemed like an eternity – 1.5 hrs of preparation. I had 3 people on each arm inserting various needles and tubes, with surgeons and anesthetist’s popping in and out to monitor and check progress. I also had a morphine line wired in to my the jugular of my neck and an epidural tunnel into my spine…They were maxing out all the pain killing options for when wake up post surgery, one of the anesthetist team reinforced the point that I would need this. The room seemed to have 10 people scurrying around and on me..a very overwhelm ing experience, but i will emphasis that everyone was truly amazing an considerate of me and my emotions…we joked and laughed all the way through…I was almost eager to move into the bigger room (the operating theatre) as I caught glimpses of it as the double doors bounced open and then closed….lets get on with this show!
The Surgical Team
9.5 – 10 hrs
7 Surgeons lead by Dr Harold Puhala.
I was wheeled on a bed into the centre of this very large sparse and cool theatre room, it had one single stainless steel looking bench in the centre of the room. I was then transferred carefully onto this bench, where Harold seemed to emerge from nowhere and say hello Steve…I told Harold that he better make sure that I made back to Freddie’s chair…Freddie a Belgium hairdresser who also looks after both Harold and myself…Harold just nodded and that was it…good night nurse I was gone…out like a light so Harold and his team could work their magic.
Harold is a very very focused person with a dry sense of humour if you can find it.
At the pre-surgery meeting I asked Harold if he liked cycling…he replied… no it’s to dangerous…to which I relied…OK Harold, so what are we going to talk about for 9 hours?… to which Harold replied…Steve you will not be talking you will be asleep!!! …hmmm Harold obviously didn’t know me very well, as I can talk under water if I have to, so sleep talking is a piece of cake…. Harold gave me a huge confidence … thanks Harold for getting me through this.
Gold Coast University Hospital
What a wonderful caring very modern and highly equiped Hospital. The environment was as disarming and friendly as a hospital environment could possibly be, and the staff at every level were absolutely fantastic. The Gold Coast University Hospital has an amazing on chorus curative culture that gives you confidence in what is otherwise very scary and dark times.
Waking Up post surgery.
One thing I picked up on my pre surgery discussion with Harold was the emphasis on what he would do when he opened me up. Harold had said that if when he begins the surgery and finds that my cancer had metastasized, then he would simply sew me back up and refer me to palliative care…this really scared me. Harold also went on to mention to me that should the operation be successful that I would wake up with a feeding tube inserted in my left nostril.
As I became conscious in the ICU, my very first thought was of the feeding tube….if was their then everything had gone to plan…I was very nervous on this and reached for my nostril…oh the pain, it was earth shattering as I moved my arm…but hey the tube was in my nostril and I high five’d myself in my mind and said tick. Boy was I so thankful that that tube was there.
Now I am conscious and am aware of my surrounding and the massive pain from even moving my eyes let a lone my fingers or toes…bloody painful…unimaginable! I was in the ICU of the Gold Coast University Hospital, a very “Star Wars” looking environment. The pain was now the number one influence in my life and thankfully the nurse who is stationed by my side began to teach me of the wonders of this little button and it’s synthetic pain killer called ‘Fenternol’ (not sure I spelt that correctly?) I had epidural, I had morphine, I had Endone (tablets)…but it was the magic button that did the trick! so much pain killers and I needed every bit of help they gave.
Was it hard?
Yes both mentally and physically. Once it dawned on me just how large this operation would be and the hours that I would be on the operating table, yes I did become very nervous, but I was committed to go through with what Claire and I both felt was the best option to totally eradicate a wide perimetre around the tumour site and therefore cutting off any chance of metastasis
About Whipples Op
The Whipple operation is associated primarily to pancreatic cancer procedures, but has also been adopted for bile duct cancer resections.
It is a very big operation that removes a shopping list of parts with the intention of being a ‘curative’ operational procedure.
In my operation they removed 3/4 of my Stomach, my Duodenum, my Bile Duct, my Lymph Nodes, the Head of my Pancreas and Gall Bladder. Now that’s a major re-plumbing job and it absolutely amazes me how they were able to put me be back together in working order.
Link to origins of the Whipples Operation
“Just be positive and everything will work out”…hmmm doesn’t that sound a familiar cure all? This was a tidal wave of well meaning advice that I didn’t see coming. It seemed everyone had the exact same advice to impart on me whether I liked it or not, but what else can anyone say to me? It was just the sheer volume of this ‘magic pill’ type of advice that got to me, surely I wasn’t portraying a negative outlook, well at least I didn’t think I was.
The problem that began to unfold was the word “positive” was fast losing it’s credibility and I was starting to cringe every time someone uttered these words of advice to me…I wanted to say “look around you, lots of positive people are dying of cancer” so just being positive is not the answer.
Cancer is an out of the box experience which most definitely shatters the positive innate immortality that I had installed in me at birth, I now have this new feeling of absolute mortality…a very strange and threatening feeling that questions a lot about life and if being positive is enough.
I came to the conclusion that when all my well meaning friends and family needed to tell me “to just be positive” it was really to help them cope, more than me, and they were just encouraging me to keep my head above water and keep going…it must be hard…what else can be said to someone in my position. I know this, as when I pause and think, I have been on the other side of this situation many times and I am not so certain that I was very good at offering positivity…
But I needed to get ahead of this and take responsibility and ownership, this was actually my problem not theirs.
Being positive is a genuine state, and real effective positivity always emulates from being attached to something tangible, something you can touch and connect with. So I had to set some priorities in motion.
Priority 1. I needed to accept that others did not know what else to say to me.
Priority 2. I needed to accept that when someone said to me “you just need to be positive” it was them doing their best to help me through the tough months ahead.
So I tuned my mind into visualising an avalanche of well meaning friends and Family feeding me this advice, a special energy source that charged me with the energy levels of my own avalanche. Now that’s a huge positive energy flow.
But as always I have to do my bit… I have often found that Action really does replace Fear so how am I going to replace fear with positivity?
Positivity is a funny thing, as it can be such a fleeting intangible warm pulse of energy that passes through me like a warm fuzzy, and then vanishes again without reason. I find that if I stop in that moment and acknowledge it, do something tangible against it, then I can maintain it’s magic momentum. Effective positivity is what helps me walk on water and that’s a great feeling that I never want to lose. I very often stop and write positive stuff down as it gives me that ’positive’ feel for longer, and makes it more real.
I place a high value on starting each day off on the right foot, so this is how I go about building my positive day, building a resilient aura field around me.
Every morning (Like Ground Hog Day) when I wake, I put my feet on the floor without question or negotiation, not allowing any other thoughts in my head. When my feet hit the floor I say to myself “Steve take these first 2 steps toward todays new and fresh momentum, as something really good will happen to me today, and something surprisingly good will also happen today”
I cannot emphasis enough that I do not negotiate any thoughts before I get out of bed… and that can be very hard after a bad dream or two.
Yes, every morning I am literally investing in a pure leap of faith, a sort of inbuilt instinctive belief that my mind and body are hard wired to first ‘walk’ and then ‘think’ in that order, which kicks into gear the new days magic momentum.
My strong expectations are that momentum will reach out and greet me, rewarding me for my bold steps into a new day.
I think potentially everyone has this issue every morning, but with the entry of “Cholangio the Beast” into my life, I felt I needed to be far more deliberate and in control when starting each day.
Momentum has strong mind enhancing power, and momentum and positivity are great partners so I need to continually take an action or a series of actions to keep me busy… If I am too busy building momentum then I think there is no room for the negative.
I find this really fills my aura energy field, which I can transmit to others, which in turn makes them feel more positive for and with me.
Priority 3. To remain positive I needed to change my whole “Thoughts and Thinking Structure”…Yes I needed to break myself down into pieces of ME … a bit like Chapters of Steve, which I have to say was no easy task considering the eclectic and creative style thinker that I am…actually this was going to be a big job!
My future is going to all boil down to my “Thoughts and Thinking” style.
So I literally began to pull myself apart and create chapters of ME… all very real and raw – nothing polished.
To be truly positive I had to become a better ‘thinker’ and harness my ‘thoughts’ to become a better person for my family, I needed to show them that I could pick myself up from the floor and contribute to a real tangible and positive future. That’s the least I could do, as they have had a huge burden to carry. I have repeated over and over, I must do my bit, no matter how tough it gets… I hang onto those words because they belong to the ‘Living’ and pain is just another sign of ‘Life’.
Hmmm now here is something different, and boy (sorry girls) this really shook my foundations . . . My first walk into the Chemo environment.
In my pre chemo interview I caught a glimpse of the Chemo room as the trial nurse Erin escorted me down a long hallway to be weighed and have my blood pressure measured. What I saw as we walked by, was 5 or 6 blue recliners . . . a little intimidating and had me feeling a little like my primary school days memory of the ‘Dental Clinic’ . . . I could almost smell it.
Well the reality came the very next Tuesday as Claire and I walked in for my first treatment . . . 5 or 6 chairs …WOW it was more like 50! and they were all full . . . this is scary stuff . . . I am no longer the only person in the world with cancer! A new reality had hit me like a ton of bricks, and I did not like it one bit . . .
The Chemo Environment
I have to say at first I felt that the atmosphere, had me feeling a little like another cow being herded into the cattle stocks . . . yes it was scary and overwhelming . . . this large environment was full of people just like me, and they were all seated or lying down, with tubes and wires seemingly running everywhere . . . some were totally zoned out but many wore their pain or life story on their faces. The Chemotherapy wing of Level 4 in the Joyce Tweddle building, is a unique world of blue recliners, tubes, machines and nurses scurrying in every direction, a very confronting and intimidating introduction for a ‘green-horn” like me and the realisation that this is a place that I would now be spending a lot of time in, over the next 6 months.
I did learn very quickly that below the surface of my fellow chemosabies and their pained faces lay a treasure trove of very unique and robust personalities, talents and experiences that can only inspire you . . . all I had to do was say ‘gidday’ with a smile and “Bobs your Uncle” and the door to this treasure trove opened . . . It’s a no brainer really, after all we were all in the same boat one way or another! My fears began to give way to the magic personalities and bravery that lights up this special place, a place that is filled with the most ‘ALIVE’ people that I have ever had the pleasure of meeting . . . and yes Natalie and Adam, I am thinking of you guys as I tap out these words on my keyboard . . . you both have really challenged me on who I am in the most positive way possible.
I guess the big stand out to emerge out of all this new chaos, was how quickly I assimilated, and made friends with both my fellow chemosabies and the nurses who so attentively looked after all of us.
It is so easy to be negative and so hard to be positive, yet it is still our choice . . . I guess getting cancer takes you to that edge, it’s an edge that crystalise’s vision and choices in life. The choice for me was easy, but being positive is much more than just a word, “Positivity” is an infectious byproduct of our primary thinking and actions . . . it’s tied to how we project a willingness to be open and optimistic in moving forward, no matter the challenge . . . this is what I could see in both Natalie and Adam . . .
Its probably at this point I should mention this amazing bloke called Cliff . . . Cliff wheels around the tea cart loaded up with tea, coffee, egg sandwiches, cakes, and chocolate bars (and much more) . . . what a bright light Cliff is. Here is a bloke that is fully loaded with good old fashioned ‘jockularity’ and a memory like an elephant, to go with his unique wit. Cliff washes over all in his path with his very own unique chorus, much like the animated ‘Town Cryers of old’ with lyrics sculpted straight off the cart of goodies . . . Cliff you bolster our spirit . . . long live King Cliff !!! Even when I couldn’t eat much, I still looked forward to Cliff’s mobile food show full of banter and goodies.
Ps…Egg Sammies seem to be a prize catch in hospital!
Level 4 of the ‘Joyce Tweddle Building’ of Royal Brisbane & Womens Hospital (RB&WH) a special place where ‘hope and reality’ combine forces, to lift us above and beyond.
The whole team that have looked after me at Royal Brisbane & Womens Hospital are truly amazing. I still haven’t figured out how such a large hospital can consistently pull off in unison such a professional caring and curative culture . . . it just blows me away and I can’t thank and endorse them enough with just mere words . . . BUT A MASSIVE THANK YOU FROM MYSELF AND CLAIRE.
What did chemo do to me?
Yes it smashed me for 5 out of the 7 days every week, including the week off.
It was very very hard, I found it debilitating all consuming and painful, leaving me glued helplessly to bed or the couch for 12 hour stretches. I didn’t so much sleep, it was more like a semi conscious moaning type of experience that hurt every fibre of my being . . . I was like a motionless drone almost living an out of body experience at times . . . sitting up was for the birds . . . it was just to hard. I cannot believe I did this for 6 months. Yes for me it was a continually painful experience washing and swirling throughout my body, leaving me weaker than I could ever have imagined. I did try very hard to keep up a routine where I would get out of bed at 6am, shower, (& showering was a marathon effort) dress well, and go for coffee everyday (no lazing around in PJ’s) . . . yip this was a mission, but I felt it was very important for me to set a standard no matter what. When I was up and about I always seemed to be in a distant place, a bit like an outer body type experience . . . very weird and hard to explain . . . at times when I was talking it seemed as if I was telegraphing my words down a pipeline to my earthling self on the ground.
The best day was chemo day (Tuesday’s). It seemed so cruel that my best day of the week – Tuesday was also the day of my next infusion . . . why was it my best day? . . . on Tuesday’s (the 7th day from my last chemo hit) I began to feel half human again, I felt like I could eat something other than my total diet of oranges, ice cream and chocolate . . . Yes that was my staple diet for 6 months . . . anything sugary was acceptable, everything else was out. I loved broccoli and green smoothies prior to chemo but unfortunately all vegetables, meat, bread, butter . . . anything non sweet was off the menu, I couldn’t even face the thought of it let alone the smell. I raised this subject with both my surgeons and Matt my oncologist and my concern that sugar is been painted as cancer promoting . . . My bloods however had a different take on all this anti sugar sentiment, and actually remained very good throughout my 6 months of chemo. Interestingly enough you would think being on a high sugar diet that you would stack on the weight . . . but instead I continued to loose weight despite this sugar dense diet. For anyone reading this, I will reinforce that I did not choose to eat a mono high sugar diet . . . It was either sugar or nothing. My surgeons and oncologists main concern was that I eat and maintain weight even if that meant eating as I was.
There were a few times that I protested that I couldn’t do this anymore . . . but it seemed that all I needed to do was vent my feelings out loud and hear my own voice, as that re-engaged my fortitude and I pulled up my socks and got on with it . . . I never told Matt, that there was a couple of times that I had vented on the motorway . . . where I was telling Claire to turn the car around, Ive had enough! but magically when the words came out, I kicked myself back into gear and on I marched.
Chemo is very very tough and ignorance for me was blissful, as I marched headlong into this challenge without any real knowledge . . . but yes knowing what I know now, I would do it again if I had to, as pain is a small price to pay for a shot at extending my life . . . I have a responsibility to Claire, Zach and Georgia, and also to myself, to stick around and fulfil my marriage vowels, my Dad duties (my Dad died in front of me when I was 29 yrs old) and explore my unfulfilled potential . . . Kids need their Dad, something positive to follow, a torch to their heritage, besides I also have quiet a few friends that I need to stick around for . . . especially because there are a few cycling buddies that still owe me a tow!
And what about the Chemo brain?
Now this is an excuse ridden subject . . . I had never heard this term before, but I was about to become far more aware of it and what it mean’t. Yes I had the headaches followed by the descending fog and the large gaps that invaded my otherwise great recall and memory . . . forgetting peoples names and words coming out all befuddled . . . shit did I just say that? . . . a little bit grumpy, mainly at myself, but there were also times when I had an attitude that came out of nowhere, for example . . . “Don’t you know that I have cancer . . . give me a break!” Yes it would seem that chemo brain is a real thing. My attention span was shot, I couldn’t read anything let alone use the mobile phone, and sitting upright was just to confusing . . . lying down and closing my eyes was the only place where I could hide.
Thank God for Showers
No I am not religious . . . but you know what I mean (I hope). Chemo has a habit of breaking you down emotionally and, I found showers were a great place to go and let it all out . . . and trust me there were days where I had a lot of showers (could have been a Guinness Records?) I definitely kept Claire busy with all those wet towels! (As if she needed more work to do.) Why the shower? . . . The shower was a great place to wash away all those unwanted tears, that unleashed leaving me like a blubbering idiot. In the shower I just felt more secure and comfortable under the umbrella of hot streaming water in a steamy cubicle. It was always a significant physical effort to get there, as the strength that I required to get in and out of the shower plus dry myself was huge and exhausting . . . but it was a great outlet and it did get me up and away from the long periods on the couch.
And thank God for Dark Sunglasses and a fast acting Wife
As I have mentioned I made an effort every day to go out first thing in the morning, and as often as I could on my own . . . I tried hard to reestablish my independence and prove to Claire that I would not be a liability any longer than need be. It was my public appearances that scared me the most, as I was looking thinner and thinner, greyer in complexion and physically very weak . . . yes I know that people noticed, and I noticed that they noticed . . . of course everyone told me how well I was doing and how great I looked . . . hmmm “Big Fat Liars” . . . ha ha . . . I was onto them and accepted their very well intentioned and gracious motivations. BUT for me, the biggest challenge was keeping myself together emotionally . . . this was bloody tough, with many times, and when I least expected it, I found myself falling apart and uncontrollably beginning to weep, I lost my poise and my self control . . . I had an out pouring from who knows where! Thank God for Claire and Dark sunglasses, Claire would help me pull myself together and get me back home to safety. This is all just part of the chemo deal, and was a huge learning curve for me.
Our Tuesday Schedule . . .
A military styled exercise timed down to the minute
Something that quickly became apparent to me was how uncomfortable my predicament made others feel, it was easier to stay away or avoid me, than the awkward alternative of face to face or even a phone call…what can be said? But as most who have or are going through this cancer funnel know, you begin to feel as though you are being shifted politely aside to a land for the ‘not living & not dead’ an invisible societal matrix type zone that neutralises you out of the mainstream.
Hmmm… I needed to make others feel comfortable that I was comfortable with all this cancer stuff! I needed a story and disposition that projected that I was very comfortable with the word cancer. This left me with one option in my mind, and that was to really really take a hard look at how I could genuinely be “Happy Happy” about all this, and yes I know how ridiculous this must sound.
My approach was simple, I had to accept that I had cancer and that within that reality, what could or should I be happy about?
I also had to accept that how others felt in my company, was actually more my responsibility than theirs. It is so easy to slip into the blame-everyone-else type game when you are down on your luck, and it’s a lot harder to dig deep and not be a victim
Firstly I broke myself down into pieces of ‘ME’ …yes a bit like Chapters of Steve, which I have to say was no easy task considering the eclectic and creative style thinker that I am…actually this was going to be a big job! Yes it was all going to boil down to my “Thoughts and Thinking” style.
I began to pull myself apart and create chapters of ‘ME’ all very real and raw nothing needed to be polished. Once this was done I then began refining the raw and reconstructing each chapter. I gave each chapter a title, and in a book fashion I named the whole thing “STEVE-it UP” (everything has to have a name) I now had this make shift book with bite sized pieces called chapters.
Once this was complete I had a full rebuilt chapter by chapter Thoughts and Thinking Machine profile and manual on “Steve”. I had something real and focused, far less congested which now empowered me with a crystal clear understanding of ‘ME’. I could now re-engage the world and more to the point deal more effectively with the challenge at hand, I could walk with more confidence and purpose alongside “Cholangio the Beast” ~ he was now a partner not a foe, or more specifically I was “Keeping your friends close and your enemies even closer”
I would have not changed or done a lot of things if it wasn’t for my cancer diagnosis.
I am now in a powerful place of necessity, which is driving me to really get to know who I am and how I have been functioning pre-cancer. I have essentially written a book called “STEVE-it Up” which holds immense value to at least myself, and who knows where this will take me. As I stopped and paused on all this, I could now see with more clarity, the many things within and around me, that made my life absolutely worth living for. I have now formed very strong reasons to contribute, to enjoy, and to be part of, and yes my walk with “Cholangio the Beast” has absolute clarity of mission and purpose.
I have more clarity in the power of sharing.
I have learnt to slow down and read the instructions…”Slow down to go Faster” really works.
I have created a global Cholangiacarcinoma platform capturing LIVE 24/7 all public Social Media posts about Cholangiocarcinoma https://cholangio.com This captures the Foundations, Organisations, Specialist, Oncologists, Patient stories and Charity & Awareness efforts along with video coverage. I am sure this will evolve into a vital and strong community tool in the fight to conquer “Cholangio the Beast”
I have begun to formalise my public speaking to communicate what I have to share … yes action replaced fear!
The Chemo has taught me about dietary habits both in volume and type of food groups.
There seems to be a cascade of new things and experiences unfolding in my life as I progress through this new journey. But I must highlight the unbelievable generosity and giving from people in general, and especially from people I least expected… so humbling.
This journey has also taught me the about the danger of assumptions… boy have I made a lot of wrong assumptions and I now find myself pausing and challenging old habits in a very healthy way.
Yes a big Emergency…Something was wrong!
I was invincible until I wasn’t, mortality was no longer a virgin
On January 5th while recovering at home, I suffered a near fatal aneurysm to my main hepatic artery, where basically I nearly bleed out internally.
I said to Claire that something didn’t feel right in my stomach, and of course I was still dealing with all my post op stomach pains, but something was different, I couldn’t put my finger on it and just needed to lay down in my own bed instead of the couch, so I headed into the bedroom and lay down, and according to Claire I passed out unconscious and began vomiting up blood. If it wasn’t for the very collected and fast actions of my wife Claire, and I really cannot imagine how she emotionally managed to cope with this and had the cool head to get me into a recovery position and get the Ambulance recovery team to my bedside so quickly… I would never have survived, let alone made it to the Gold Coast University Hospital Emergency.
True hero’s do exist and although I can thank Claire to the ‘cows come home’ for what she did that day, I only wish the ambo’s who attended me knew how grateful I am, they essentially delivered me into the hands of a very talented team and a highly skilled surgeon, who saved my life…it was so fortuitous he just happened to be in the right place at the right time (GCUH – ER)
I am not sure of the exact facts here, but as I was now conscious in a backroom somewhere in the (ER) emergency department and a surgeon by the name of Tom Snow walks into the room with what seemed like about 20 doctors following him, he was focused on me like a laser beam, and I must say he looked a lot like Richard Gere in a cool set of Oakley clear sunglasses. Tom in a very deliberate and calm tone, introduced himself and explained “Hi I am Tom Snow and you have a hole in your hepatic artery, we are operating NOW”. I was dazed and the many faces and animated mouths surrounding around me (as if I wasn’t in the room) discussed if they had time to move me and where. Still dazed and more confused, I think it was about a minute later, almost without pain or warning, I had a massive and explosive projectile vomit of volcanic like blood, thrusting out and upwards, over a poor young doctors shoulder, the room scattered as I followed with two more projectiles splattering all over the room like a volcanic eruption. In a matter of 30 seconds I had ejected about half my body’s blood (but don’t quote me on that one) The busy faces stopped and looked at me and I could see the grey flush come over them all at the same time, the room just went silent, then Tom broke it abruptly with something like, “OK team we have less than 15!” With that, the noise jumped up into high vibration and I remember thinking is this me they are rushing for? Then two people pulled my shoulders back over the pillow that my head had been resting on. A nurse then placed a mask over my nose and mouth telling me to be calm, everything was OK…or something similar, this is really one of those outer body type of experiences and surprisingly I was calm and yet not surprisingly a little bewildered.
You would have to say I was certainly very lucky that I did all these theatrics in the right place at the right time…and in front of an assembled team of experts. This was more time critical in my survival than I could possibly known.
So I am asleep and Tom and his team at speed swing into action. Tom had to first stop the blood loss by threading wire up into my hepatic artery to where the blood was escaping and coil the wire where the blood manages to clot on the wire and block the hole (well thats my basic understanding) Tom then terminated my artery (which I have no idea how). With the artery terminated, I had now lost 30% of my blood supply to the liver. Blissfully I was totally unaware of how serious this whole ordeal really was, and the roll of Tom Snow’s unique talent was to play, I had indeed cheated death within a cats whisker, as I was to find out later that not to many people survive this type of thing.
As far as I can remember I woke up 2 days later in ICU. For 2 days I was in and out of consciousness, after what seemed like a stint in a giant tumble dryer full of air and water bubbles, with nothing for me to grab hold of…a strange in-between place between life and death…and yes I did get a look at both ends of the life or death spectrum, and for me the only resource at my disposal was my mind. It is truly amazing how your mind can reach and extend to where you want it to go… yes to me there was an up and a down, I guess you could liken it to a drowning dream, where you are in a deep ocean and you can see upward to a dim greyish defused light, and downward in to a deep darker abyss. Nothing was scary, in fact it would have been so easy to remain motionless and peacefully slip away, but that wasn’t in me, I had a strong and calm sense of ‘being’ and a strong calm feel to extend my mind upward toward the light, almost as if my mind was a physical part of my missing body…all a bit weird I know, but I did become intensely focused without reason, without fear, in fact I was very calm and determined as the light faded in and out to become dark for longish periods as I was engulfed in the heavier abyss. It was very strange, as I felt myself slipping down further being consumed by the velvety dark blue-y grey abyss, I did not panic, I felt calm and determined to continue reaching up…It was was hard to keep reaching, but I didn’t seem deterred by not making progress. Yes I had a lot of luck riding on my shoulder, and I really had no idea I was or had been battling it out with death. Maybe in the unconscious world I was discovering my true inner character, a character which was to emerge and carry me through to where I am today…I had no idea then what character and fortitude I was going to need, to travel this journey alongside ‘Cholangio the Beast” I have certainly learn’t a lot about myself on this journey so far, and I do know I have been punching well above my weight on many occasions. Is this the right place to say that infamous quote…“What doesn’t kill you makes you stronger” ??? well I certainly hope this proves true for me and my family.
My eyes are open once again …where am I ? I am disorientated and I cannot move a muscle. As I become more conscious I can see Claire’s face and I can see that I am back to being some type of bionic man fully connected by a maze of wires and tubes, back in the ICU …it had been 2 days of nowhere and nothingness. All I remember is being tossed around in a big tumble dryer of air and waters … all bubbly and shades of grey, and then I found myself sinking slowly in what I can only describe as the deep blue ocean with darkness below me and filtered light above me. I remember that I felt comfortable and serene as I drifted lower into the darker blue depths. My focus was drawn to the light with my eyes seemingly acting as limbs and reaching and moving me gently back up toward the surface. As I got closer to the surface I could see the most miniature of human type figures, almost black stick like characters at the reverse end of a set of binoculars …it seemed as if I dwelled in this space for a while and then suddenly I broke through the surface and saw Claire…
Over the next few days I had to regain strength in my entire body, assisted by more blood transfusions which seemed to have the impact of a couple beers…it felt so good. I cannot get over how weak you become without this blood stuff!
It didn’t take me long to become aware of my surroundings, and as I have often thought throughout this journey … I am not going to be a victim nor will I be a patient and longer than need be, so with the Claire’s assistance every day, I was up on my feet pacing the hallways.
A strong memory of this period was that I remember vividly just how heavy and weak my arms were and not being able to lift them up off the bed… I couldn’t even reach up to feed myself…Pretty Scary Stuff, but fortunately I regained enough strength to pester the Nurses and Doctors into getting rid of me..Yahoo…“it’s time to get the heck out of Dodge and blow this hotdog stand”…(Sorry I just love my slang!)
Out of hospital and back home and back on my feet trying hard to grab back something normal.
My mission was to regain some fitness before the onslaught of my impending 6 month Chemo trial in February. I made sure that I was active although I could only mange short walks. I felt that I had no battery power, so these shots are more show than go…and the sunshine did a lot for my morale.
Claire is always close at hand, as she has been all the way through this whole journey, amazingly Claire has never missed a beat, and never put off course by any of the distractions and chaos that I had caused on her and the family. I quickly learn’t that it’s not only me that has been through this… Claire had absorbed and stood tall for the whole family…that’s an almighty effort in anyones language…You have to ask yourself where does someone gain the strength and wherewithal in a time of crisis?
The hardest thing for me to accept was help, the word help just won’t come out of my mouth, no matter how hard I try…But I was so quickly out of my depth and I really needed help whether I could say so or not. I literally could not fix, or control all this… Life was really happening on me and I wasn’t part of the planning team. But all the impact was not only on me, it was slam dunking my family in the most abrupt manner, I could no longer filter the problems and be the strong provider, protector. I was now literally pinned to the floor, not a pretty sight for my wife and children, and those who bestowed the privilege of relying on me…I felt so guilty and I had no backup plan, I was totally exposed.
As I wrote earlier when this type of event happens on you, everyone wants to help, encouraging you to be positive, it’s just human nature, but as I was to find out life is a very tangible thing, and the best help you can receive is of the plain basic tangible type variety. Being told to remain positive, or “if there is anything I can do” is all very nice, and you hear in such volumes that it becomes torture. Adding to my earlier comments, this all adds up to being no better than receiving a huge over supply of generic ‘Get Well’ cards with an obligatory signature at the bottom of someone else’s words, versus those very tangible heart felt meaningful mistake written letters and the bad hand writing for that matter ‘Get Well’ cards that cause you to pause and reflect, filling your heart with a strength and motivation way beyond what the writer could ever know…little rays of sunshine. Now I do not say this to be cynical or critical, because I was even worse…I didn’t even send the card, but I have learned this and I felt the need to share… something so small really does count and lift, and is more than worth the effort or cost of a postage stamp.
No matter which way you slice and dice this ‘Help’ attitude stuff, sometimes you just cannot get up off the floor on your own and you have to accept help or perish.
But no matter how hard it seemed, I still had to be the one to make the first effort and get up off that bloody floor. Deep down I still knew that I needed help for me and my family and it really hurt, they were all in pain because of me. I had to learn humility and I needed to learn and accept it quickly, but I guess I had always tied this to character weakness, I am not sure if this is just a male thing but it really burns to my core. I also knew that no matter how positive I wanted or would have liked to be, there are just some things that life throws at you, that are way out of your league, and this was one of those things.
Helping yourself first is a very tough gig, but it sets a momentum that others can feed into and can really help build meaning and tangible measurable direction, a direction that provides increasing confidence, rewarding all those with being part of a successful recovery, which is a truly powerful, emotive and intangible force…Tick tiny goals and walk on water together – WOW what a feeling!… We can all celebrate that one together.
Yes it does seem that it takes a community to raise a child. …. Help and Life are so very, very tangible… How did I not know this?
Everyone has done such an amazing job at getting me back on my feet, and now it’s my turn to do my bit and repay everyone who unreservedly, unselfishly invested in my future above terra firma. I am determined that I will bring a smile to their faces that will match the warmth of a fire-side glow that blankets your soul on a cold dim night, where the warmth encourages you on to celebrate the worth of life after all! …most of us know that feeling.
I am upbeat about all this, and I will continue to do what I love and that is riding, running, meeting great people, being the best I can be, and giving my family strength and pride through my best efforts, I have so much to repay and I like to think I am up to this challenge. I also like to think that my business pursuits not only reflect these lifestyle elements but also the positiveness of really helping people reach their potential of living and the enjoyment of life itself…. it’s more about ‘Being’ than ‘Having’. I see “work” as a privilege and an extension of who I am. Now that I have survived to work (and play) another day I have a new challenge on the horizon, a challenge in adapting to a journey with ‘Cholangio the beast’ and all the scatter gun connotations of the word cancer. How do I blend the almost unpronounceable word Cholangiocarcinoma into my work and business environment. I need to do this in a transparent and non scary way, not dogging me from the shadows. This is going to be a tricky ask, as we all know how many cringe at the mere hint of hearing the word “Cancer”, but this cannot be the factor that knocks me off course, I need a new fresher happier way at approaching this, so Cancer and walking alongside ‘Cholangio the Beast’ has actually become a new qualification in my career path. …hmmm an interesting way of looking at it! Again I think of another infamous quote…“Keep your friends close and your enemies even closer”
‘Cholangio the Beast’ came crashing through my front door with all the impact of an unwanted grubby guest at a party. Yes Cancer made itself right at home with no intention of leaving.
Change is happening upon me at speeds that leaves me overwhelmed and disorientated. What I have quickly learnt like anyone else, I am who I am and that is my starting position that I had to understand and accept. For me this meant instead of coming out blindly swinging, I instead needed to get ahead of this whole thing by pre-empting and gaining some sort of control…any control would do, so I had to initiate my own changes, anything would do, so long as it gave me something toward regaining some reasonable control. What this would or could be I had no idea, I just had to have an attitude that I could.
The biggest change was firstly acceptance that cancer is now part of my life, even if I get through the next 2 years successfully.
The next biggest change that I had to initiate was to regain control of my attitude toward my life on a daily almost minute by minute basis, and to use cancer in my favour. How I did this was I pictured “Cholangio the Beast” as one of those Disney characters, where I was walking alongside it on one of those gravel lanes lined with endless yellow flower beds that you see in a Wizard of Oz movie (yes I am a tragic for all the characters combined), anyway there I am walking alongside not engaging in a battle or fight, but chatting as we stroll, trying to find common amicable ground, who knows maybe even become friends. I really did not want to invest negative effort into an unknown fight…although who knows, it may come to that whether I like it or not, but for now I would like to think I have some of the control, along with a good dose of “Steve-it Up” type initiative plus the benefits of modern medicine.
My “Steve-it UP” make over was in part motivated by a very close friend Ev, as he kept repeating to me that I needed to just focus on my health, and each time as I left that conversation, I kept thinking, that’s all well and good but I have to re-enter the lions den, the work place to earn money which either pays for my care or propels me upward to enjoy a healthier, wealthier lifestyle, and not the one I had just come from … 5 years of building a business doing 18 hour days, 7 day weeks, until I faltered, now that’s stressful and obviously not healthy, but unless I sorted myself out fast, that is where I am headed back to.
Attitude toward and direction toward are everything, even if you do not have the answer at the beginning, allow the magic of momentum to lift you…take the first step and leap of faith anyway, do it without negotiation…take the second step toward momentum, it will engage you, it will motivate you and direction will find you.
Inspirations are a funny flexible and very idealistic thing. For me I am not sure that I can explain how I chose what inspires me, or even the logic, but I can share it here for what it maybe worth.
Being a Kiwi and growing up with the religion of Rugby, it shouldn’t be a surprise that a rugby player features in my thinking. For me the most dynamic and probably the best rugby player of all time was a skinny white guy, a sensation that trumped the great towering presence of the Tongan born Jonah Lomu, who without question was a rugby sensation. Yes I am talking about Christian Cullen, an amazing uncluttered athlete who stunned both sides with his brilliance. What captured and engaged my attention when watching Christian, was primarily his job was to score trys …and from anywhere on the field at anytime. I am aware this must have been an extremely difficult task for John Hart to coach and organise a team when you have the obvious free spirited talent on the same team, yet John managed to achieve a synergy that worked. Christian’s single minded attention to scoring trys amazed many, how could he score so many trys seemingly so easily, and with half the opposition team tackling him. For me Christian seemed to surrender to every tackler(s) and there in lay the secret… Christian relaxed and seemingly surrendered to the tackler, and therefore transmitting to the tackler that he had succeeded, and then the tackler would relax slightly, only to see Christian re-engage and slip the best of tackles to go on and score a try… Now this is the stretch, I loved to watch Christian weave his magic, so why can’t I do the same?
Through all my Cancer stages, Symptoms, Diagnosis, Operations, Chemo’s and alike I have pictured all these stages as the tacklers and I am Christian… Yes I just accept each stage as it comes, surrendering myself for just a moment, only to re-engage when the tackler/stage least expects it, and I bust free to score a brilliant try. The try for me, is to be ‘Vibrant, Passionate and Healthy’ despite the diagnosis or predictions hanging over me. Yes the tacklers were just obstacles that slowed me down on my way to scoring a try… Thank you Christian Cullen, you shone a light that I could follow, even if I could never be an All Black…Bugger it would have been nice…Ha Ha! and I should also include Tana Umunga who rose above so much to not only become an All Black and a great ‘Back’ but also go on to lead the All Blacks as Captain.
Tana Umunga, Christian Cullan, Jonah Lomu – The greatest combination in rugby history …my hero’s, my inspirations
Other Inspirations to me, aside from the Wizard of Oz, and Where the Wild Things are is “Love your Sister” .
L.Y.S. sits right up there… Connie and Samuel Johnson – an eclectic Brother and Sister duo thrown together in a way they never imagined, two personalities demanding different spaces in this world, but ultimately finding themselves in a journey together uncovering talents and strengths way beyond what they thought was ever possible or wanted. Connie and Sam, could never have known that there deepest potentials would literally be dragged out them, just like a couple of very naughty school kids that would never amount to anything in life. Yes I can still picture naughty Sam sitting on top of an old discarded TV set, which he found on the side of a road, way up the top of Australia somewhere. In the midst of crazy hot temperatures, there he is, just like a naughty little kid sitting on top of a bloody old TV set, saying “I’ve always wanted to be on the telly!” Why did he do this you may ask?… the crazy bastard thought he could break a record by riding on a unicycle around Australia to raise money for Breast Cancer. Connie has been battling cancer for most of her life…Connie has a husband, and two beautiful kids that she would love to see grow up. What is so special with Connie, is that she just keeps moving forward relentlessly one step after another, and more often than not with little brother Sam chasing her up the rear not letting her succumb to the long lie down…Yes Sam’s persona was a bit of a ‘Dick Dastardly’ styled character, always nipping in from behind with some far fetched plan or obscure trick. This maybe a bit of a harsh analogy as Sam has pulled more than a few big white rabbits out of the hat… yes I know another cartoon character analogy, but hey it’s my story… You should jump over to “Love your Sister” and check it all out for yourself…
It sucks, but it was looming . . .
Time to surrender . . . time to except . . . and a time for me to re-engage and slip this tackle – a try needs to be scored and I will find the line.
Christian Cullen slipping yet another tackle.
Life doesn’t travel in a straight line (shock horror) and the straight line seems to attract plenty of kinks, curves & obstacles that need to be dealt with along the way, but the straight lines intended end point is still clear . . . acceptance and adaptability are all part of the deal when you are on a mission . . . the line to success is always straight until you begin.
We are all born with the credentials to handle these unexpected obstacles, even if we are served up with a “Terminal” Challenge (diagnosis) . . . the try line hasn’t moved, it is still there, I just have to thread a new pathway and shrug off some willing opposition tackles . . . yes I know where the try line is, and it is still there waiting for me, steeped in rewards without compromise or bias.
Terminal is typically an informed medical opinion . . . and agreed, it is an opinion based on knowledge and stats up to that point . . . but diving back into my analogy bag of tricks . . . it’s so much like a rugby test match . . . teams can be written off as no chance in the run up to the big day, based on recent form and yes this is also just an informed opinion up to that point in time . . . but of course as the teams take the field, thats where speculation and opinion end and the real results emerge . . . as the losers on paper, become on the field hero’s . . . Yes the human factor is enormous and unpredictable . . . its as if they / we have bathed in a belief that we can actually “Walk on Water . . . ticking off all the Tiny Goals” along the path to victory.
I have always been inspired by something beyond me . . . it helps lift me above me, especially when the way ahead has changed yet again.
OK being a Kiwi and a faithful follower of the religion of rugby, it shouldn’t then be a surprise that I plan to overcome my latest obstacles using strategies and passions that have inspired a nation . . . Champions such as Christian Cullen have emerged holding the torch high for others to learn and aspire to . . . surely I too can learn from this magician, surely I can become a great try scorer within my family and hold the torch high for future generations of the Holmes family!
The Art of War and the battle for the Liver
This is a high stakes battle . . . My liver is the battle field …the field of life and death a path of survival or destruction, it is imperative that I examine all angles and possibilities.
Merk has made it’s army ready at Mathew Burge’s disposal . . . Keytruda is Merks best weapon to defeat the mighty ‘Cholangio the Beast’ and it’s marching army of Tumors
Mathew Burge (my oncologist) is the local general in this army, Matt is executing a well organised plan to win the ‘Battle for the Liver’
Steve Holmes (Me) is the faithful foot trooper following the Generals orders . . . giving everything that can be given to win the ‘Battle for the Liver’
“If I win this battle, I will continue on, so as not to blunt my edge, or become dull to the challenge of winning . . . Victory will be respected, I will not fall back in my efforts, I will ensure that my strength and awareness remain sharp and at the ready, to keep ‘Cholangio the Beast’ and it’s army of tumors defeated forever.”
This healthy Liver is mine!
It seemed that when I surpassed 40yrs back in 2000, the mishaps and medical mayhem emerged…
Ambitions to achieve and Stress have play their hand in my life.
2002: Belspalsy: Stress induced and looked a lot like a stroke, leaving me disfigured and unable to talk properly.
2007: Anaphylactic shock from eating prawns was a near death experience.
2012: Broken Neck: Cycling race serious break of my C6… partially paralyzed, 8 months to recover (very fortunate to recover)
2016: Cholangiocarcinoma …”Cholangio the Beast” of all Beasts
2016: Aneurysm of the Main Hepatic Artery where i came within seconds of death.
2016: Became a Terminal patient, with multiple tumors on the Liver
I have definitely had my fair share of challenges to over come, but somehow I have moved through them. I have always tried to project my mind and actions beyond who and where I am today…I think everyone has unplanned oppressive obstacles in life, just as they have the unplanned highs that life can surprise us with.
I am by nature a person that is almost always “Willing, Open, Optimistic & Evolutionary” it keeps me passionate and action orientated in life, and I think this trait has turned out to be a vital ally in overcoming these challenges.
Fear For NO Reason is BAD . . .
Fear for me fast evolved into an unchecked bad habit, a habit that drove my stress, I guess most people suffer this in our modern very fast paced techno-driven lifestyle which moves faster than we can realistically expect to keep up with, this then highlights the value of the word simplicity.
“Simplicity is Powerful, Insightful and Reassuring.
Simplicity is also elusive and complicated, but like everything in life it is a learned discipline, simplified by consistency and openness.
I have always been a great multi-tasker (even though I am male!) the problem for me was the unchecked evolution of this supposed skill, I was multi-tasking on multi-tasking, you know multi-tasking squared. . . . I was sprinting all day every day…no time to jog or even walk . . . absolutely ridiculous looking back at myself but totally acceptable at the time . . . at least in my own mind that is.
Now I have “Fear without Reason & Stress without Reason” . . . its was out of control, and I was the only one who didn’t see it . . . a death combo at any level you look at it!
I have always tried to project my mind and actions beyond who and where I am today, but when you load yourself up everyday with unchecked fear and stress, and motivated by the best of intentions, its only a matter of time before something breaks (inside or outside.) Why would I ignore this type of logic in the first place? . . . well of course I thought I could or would smash it until I got on top of things . . . so it was all just going to be a temporary situation, but history has told a different story and has laid me bare for all to see that I in fact had totally stuffed up . . . there was no two ways about it . . . ‘Fear and Stress’ this very bad combo had taken over me and my habits, and the results were obvious . . . life was now happening upon me!
I think everyone has unplanned oppressive obstacles in life, just as they have the unplanned highs that life can surprise us with. I have previously mentioned, that I am by nature, a person who is almost always “Willing, Open, Optimistic & Evolutionary” it keeps me passionate and action orientated in life. I think that whilst on one hand its a great trait, on the other it got me into a lot of trouble, taking on to much at once and thinking I had the energy to do this, I guess it kept the intake valves open (unchecked) on full all the time.
This is where the advice of “Stop and smell the roses” or “You have to slow down to go faster” kicks in . . . I never got that memo . . . actually I did, but I just plain forgot it.
My attitude and actions have been constantly evolving over the years . . . I do think my health is a product of my own environment, which makes it 100% my responsibility.
I have never blamed myself or anyone else for my circumstances, it is what it is, and it falls on me to correct the course. Blaming only creates an environment of negativity and disharmony, and it always occurs at a time when I need to be at my very best . . . when I need to be as creative, positive and effective as I can possibly be.
Opportunities always seem to spring up out of chaos and unsettled periods, but I only see them if I have some type of control over how I am managing the situation at the time. Over the years I have evolved, what I call a ‘ProActive Patience’ and it has served me well in times of chaos, delays, anxiety and crisis etc. ‘ProActive Patience’ has reduced and eliminated crippling fears allowing me to evolve into a better decision maker.
I have found that fear can be so debilitating, and damaging to my attitude and health, it seems to indiscriminately create and feed unnecessary stress. I see fear in my shadows, and I guess thats just the reality of being human, it is a ‘sense’ and reactive emotion that is hard wired into humans for a very good reason.
Although I have learned and evolved a lot, I have so much more to learn, as quite obviously stress has been a major contributor to my recent health outcomes. It’s probably a lot like going to the gym to get fit . . . you will always have to continue going to the gym, if you want to maintain the fitness level that you desire. I often think if I don’t ‘happen on life’, then ‘life will happen on me’!
Fear is Good . . . Stress is Good, we are human and these are vital cogs in our being.
Fear happens and using my cycling analogy, and in particular reflecting on the great ‘Tour de France’ champion Chris Froome . . . when things don’t go to plan or they get away on you . . don’t panic just apply the right cadence (pedal stroke) and keep the heart rate in the right zone and soon enough you will close down that potentially worrisome gap. Yes the planets will realign and you can move forward toward a deserving victory.
Stress disappears under a plan
Opportunities come from fear . . . know this and seize on this…
For me choosing ‘to happen on life’, and embracing cancer for what it is, then allowed me to look at cancer as a springboard to a better me . . . to a better place. I know that some of you reading this must think I am bloody nuts, and I can hear you saying, ” but Steve . . . cancer has it’s own mind” . . . Yes maybe it does, but so do I, and at the very least I have developed a positive distraction . . . besides I have to stick around to keep on top of these two tearaways!
Fear is good as an alert system, fear can re-adjust direction and attitude in a heart beat . . . I have now found a new order amongst my chaos . . . the chaos that was well established in my life before I had ever heard the word Cholangiocarcinoma . . . I had ‘Big Plans’ in life. . . but they didn’t quite work out . . . YET! . . . Maybe the recent kinks and curves in my now imperfect straight line have taken me onto an exciting new upgraded version of my ‘Big Plans’ ? . . . hmmm thats definitely worth bathing my brain in . . . life is also capable of nifty surprises and as long as I stick around, I know that life will throw me up some more planned & unplanned highs!
It’s true…at least for me … there is this secret club
When I meet someone else who has cancer or someone who has endured cancer, it seems as if no words are needed, or we have this incredibly unique understanding of what we mean, even if our words did not always make sense. This club is a massive equaliser in life, bringing all who join it, into an equal status, a place with no hierarchy and a shared aim… strangely comforting.
It has really helped me to talk with or read about other Cancer fighters experiences, it’s as if they are the only ones who truly understand, but of course that doesn’t takeaway anything from all those supporters and carers, and in my case Claire who have battled this Beast right alongside me, they to have their own unique club and understanding…hmm the layers of cancer are extensive.
Magic Pills & Secret Sauces
Hmm . . . for me its more sauce than pills . . . we all have our very unique and special brews . . . So here is my own unique and eclectic brew, a tried and trued brew that has been seasoned through all the kinks and curves of my life . . .
People often ask me, “Steve how do you keep so positive? what type of diet are you on? what is your secret sauce in dealing with cancer?” . . . The simple answer . . . ”I love my family, I love life and I love people, so I just try to be the best me, that I can possibly be, I try to live my way through all this stuff . . . it’s an everyday thing” . . . Oh yes and dress smart with clean undies everyday, just in case I get run over by a bus (thanks for the advice Mum)
A NEW FREEDOM FROM THE CONFORMITY OF THE CENTRE.
Cancer has transported me to the edge, from the ‘Edge’ I see more, I sense more . . . I now have a freedom from the conformity of the centre. The need to conform has disappeared, I now have new exciting people, ideas, opportunities and possibilities in my life.
Setting the stage for my mindset . . . everyday
We are all Immortal until we are not . . . Its a big shock when you discover your very own mortality . . . Use it wisely . . . So I Promise to LIVE LIFE EVERYDAY UNTIL I DIE . . . in that order !
In an order that is relevant to me, this is how I approach my thinking day. I have evolved this list over years and it has just become part of who I am.
- Be Willing Open Optimistic Evolutionary: These are my drivers, they generate my vibrant momentum and aura. People love vibrancy they are drawn to its energy . . . I am no different, so I generate my own.
- Eat Light Eat on purpose & Eat happy food with friends
- Move light Move Often Move in Fun
- Take the next step toward momentum, momentum will reach out and embrace you. Momentum is the life force of having a dream a plan a vision a smile.
- Make Fun Plans + Make Challenging Plans
- Do one thing at a time and feel the satisfaction of completion before moving to the next thing . . . it delivers Stability Vision and Poise
- Straight lines always start out straight . . . My straight line now has plenty of kinks & curves and thats ok . . . they are my life’s upgrades
- Roll with punches: and don’t over react . . . I have learn’t from my cycling days, not to panic if I get gapped or dropped, just focus on getting my rhythym and heart rate into a zone . . . soon enough the gap will close and I will have set a great foundation to continue on.
- Be Remarkable Be Resourceful add Value to all I touch… otherwise move over, someone else needs the space.
- Tick Tiny Goals & Walk on Water . . . an empowering combo.
- Opportunities and ProActive Patience are two of my life’s most significant privileges
- Be aware of me, be aware of my surroundings, be aware of you
- Acknowledge & Acknowledgement are gifts that are all powerful and nourishing, especially in the smallest things in life.
- Questions are engaging . . . Questions are enlightening . . . Questions are oxygen . . . Questions generate action & Direction
- Slow down often, and also stop periodically to fully appreciate . . . I have the time . . . make it so!
- Laugh out Loud and laugh with others . . . even laugh with strangers (or randoms, as my daughter calls them) its very uplifting, regenerating.
- Simplicity is Powerful, Insightful & Reassuring . . . Simplicity is also elusive and complicated, but like everything in life it is a learned discipline, simplified by consistency and openness.
- Embrace the Evolution and plan your Revolution . . . layer by layer . . . it feels great
- CANI CANQ CANO CAND CANA: Constant And Never-ending Improvement (CANI). . . CANQuestions . . . CANOpportunities . . . CANDecisions . . . CANActions
- It’s not how much you know, it’s what you do with what we know that really counts
A great crew to have in my corner
After 3 infusions of Keytruda and finally ‘Vu’ my friendly radiologist, gets it right & produces a descent scan
Claire purchased this wall hanging of a Kombie Van to celebrate the scan results.
Hmmm . . .
its good night from him and its good night from me!