My Walk with Cholangio the Beast.
Hi all my name is Steve and this is my story . . .
We are all Immortal until we are not . . . It was a very big 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 it was if I just hit a bottom and then bounced back up out of this dark place. I found myself in a moment of clarity, almost as if all my remaining reserves of energy, had suddenly leapt to my defence and surged into my frontal lobe generating a “Matrix” type moment . . . 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 me lifting up and beyond what I felt was possible today”.
I quickly learned the importance and effectiveness of purposeful thinking . . . Vision and Purpose generate Momentum. . . without momentum is without life!
I also promised myself that no matter how I felt I will LIVE LIFE UNTIL I DIE – IN THAT ORDER ! – I know this sounds a little melodramatic to those who have not endured such a beast as Cholangio, but it resonated strongly with me at the time. I am sharing these very raw and personal thoughts primarily as a way of communicating to myself in an attempt to heal and ease the pain and maybe it will also help another Cholangio comrade? When you are in the tight grip of such a beast, it is surprising where the mind goes and the thoughts it generates.
Hmmmm….So where do I start?… AM I SCARED, YES OF COURSE I AM… AT TIMES I AM ABSOLUTELY “SH#T” SCARED…but I step up and do it anyway. (Apologies for the language!)
Cholangiocarcinoma (Bile Duct Cancer) a very rare and deadly cancer beast.
My pronunciation method – “Chol an Gio Car Ci No Ma” or maybe ‘Cholangio’ the Beast for short?
I feel like I am taking a walk on the wild side with the beast of all beasts ‘Cholangio’. . .
Continue to my full Story/diary
All the best
Steve
Ps my personal page
www.steveholmes.net.au
Thank you for sharing your journey and your wisdom. Much I what you write is very familiar (that ITCHING!) but recently, I had a transformation in how I’m dealing or living with this Cholangio-Beast you describe. On Tuesday, I literally had a daydream or vision of a Beast rushing viciously toward me and finally, I faced the beast and roared straight into it’s hideous face. The beast can be soft and tricky or loud and scary at times- but it is with me now, tamed by my refusal to let it devour my spirit. I will live well for as long as I am able. I will not curl up in fear. Onward!!!!
Thanks for sharing your story. I hope the trial goes well and you’re back riding soon
This is so real to read!. My brother had all the symptoms the same… he wasn’t well from august and got diagnosed end of November 2016. He has also lost over 20kg. He wasn’t able to have surgery and is currently having chemo (after bad reaction to first chemo … heart attack, blood clot, blood infection… he is 33 with two young kids. I am amazed how well you are doing. My brother doesn’t eat for days and never leaves the house unless for chemo. My mum and dad have moved in with him to be his carers. My sister and I have looked into clinical trials but he isn’t well enough at the moment to fly any where in Australia…. this cancer is terrifying.
Thanks for sharing and good luck with the trial. My husband has had a 3 year battle with intrahepatic cholangiocarcinoma, and like you was very fit and 57. He’s about to have 3rd op as has new tumour on his liver but in a better spot than original, then had a tricky surgery last year to remove a lymph node that had not grown in 2.5 years. They were looking at microwave therapy but have now opted for surgery. We are in Perth and they say this will be his last op. Interested in hearing how your trial goes. This thing is a monster for sure.
thanks for sharing Steve, I also documented my journey through a blog https://cholangiocarcinoma-adam.blogspot.co.uk/
I hope it gives you the reflection you probably need. I know it certainly helped me through my worst times and fears.
br
adam
Thanks for sharing! God bless all of you and our love ones! My mom just diagnosed with stage 3 bile duct cancer. I’m searching for all kind of informations.