It has been what seems like a very long, difficult and unusual battle / journey and with contradictions aside has passed in the blink of an eye. I fully understand when writing this, that although I mention the word “Long” there are many other Warriors who are or have endured significantly longer battles than I.
A Ground Hog Conundrum
I am now inching closer and closer to another 3 monthly scan result this coming Tuesday (July 23rd,) another date with the Grand Jury to decide my fate once again. Yes I am now in the centre of another scan zone vortex awaiting my fate. Last time I was in the scan zone I totally fell apart, somehow my trusty wall of composure completely deserted me, leaving Claire the burden of picking up the pieces and coaching me across the line, and she does so with such willingness and dignity.
I swore to myself to never do that to Claire again, and next time (now ) would be different, which I am pleased to say that I have so far achieved. Having said that, I have to highlight my plight of knowing where to put my thoughts, when consumed in this “Scanxiety” zone, hmmm don’t get too confident Steve, nor too scared, which leaves me trying to pretend it’s just another routine scan. The truth is I cannot escape this scanxiety vortex full stop, but plenty of room for improvement next time I hope?
Milestones of the Mind
I have also just reached another milestone that has me busting out of a Ground Hog loop. It has seemed such a long time coming – let me put in some background explanation.
February this year I was very lucky to attend the Cholangiocarcinoma Foundation Annual Conference in Salt Lake City. Mandy Wallace (New Zealand), Helen Scott (Hong Kong) and I were guests via the very generous CCF international scholarships. I would like to highlight just how lucky that I was to have been in the company of Mandy and Helen, stunning people who enriched our lives (Claire & I) not just during this event but still to this day.
Impressively Raising the bar
This was a Medical Conference that placed the Patient, Caregiver, and Advocates at it’s centre, along with some of the best expertise in the world. This is significant and from my vantage point appeared to be of great benefit to all who attended.
This is Ground Hog Breaking Stuff
The Cholangiocarcinoma Foundation – CCF have proactively raised the bar on solving a very difficult cancer problem on many levels. CCF has attacked this cancer challenge throughout its many layers of impact on peoples lives, in a way that connects and galvanises multiple factions. People of expertise and people of experience coming together under the CCF foundation format that gets things done today as well as the prized future! My wife Claire also attended the Conference – Claire was also an unsuspecting victim of this Cholangiocarcinoma Beast, and continues to support myself and others to better outcomes. We were both humbled by the warm and uplifting CCF hospitality, the many new friendships and the stand out quality of what were able to access and learn. I would strongly urge you to attend future CCF Events and Conferences and become part of a very unique and proactive opportunity.
Total Immersion and quietly breaking out from within
As I sat there totally immersed and somewhat overwhelmed with the amount of fellow Warriors, Medical Experts, Researchers, Caregivers and Advocates, I tried to see where I could fit in, and add my 2 cents worth to better outcomes. What dawned on me, was that information – todays information – as good as it was, was not getting into the hands of those who most needed it today. The CCF Conference and the many guests had stirred my pot and the dots were being joined.
Delivering Todays information Today
But what really stood out were two points:
- There is information and opportunity available today, that needs to reach the Newly Diagnosed patient and Caregiver to form part of their choice and decision making.
- There are obvious basic yet vital priorities that every Newly Diagnosed Patient and Caregiver should be equipped and empowered with before they make any big decisions.
People are literally dying today and tomorrow, because they don’t know what they don’t know, and this is not an exclusively patient dilemma, as there are many oncologists who are also information poor, as they await proof from their various medical cohorts.
But How Could This Be?
By their own admission, the medical and research community cannot agree on some basic and common terminologies, let alone connect fluently enough and filter down what they do know to reach the hands of a patient with no options left. It’s just not how the system is built or works. The majority of patients will never see such information and as such will not have the opportunity of choice such as patients like Matt Reidy, Melinda Bachini, Rose (Kate Kelly’s patient Keynote Trial 028), Adrienne Skinner (USA) and myself (Keynote trial 158). We are all alive today because we did receive today’s information TODAY – We all had the opportunity of choice.
I am fully aware that many who read this may think that this is all fine and dandy for Steve and friends, as most do not qualify in the same way. Immunotherapies are moving quickly and more breakthroughs will be seen sooner than later.
Some Micro Distilling
What I do know is that there are many many more patients like me who can qualify as I have, but this is not actually happening – why? Five percent (5%) of CC patients are like me and Matt, yet they have not taken the opportunity in a number that comes even close to that 5% – why ? My trial (Keynote 158 ) yielded 9 patients worldwide, they wanted /expected more, much more – where are they ?
This is most definitely not a shot at the Medical Community or anyone else associated to them, they do amazing things to improve our overall outcomes, and they do it with an endless passion and determination. So to all those skilled professional experts and colleagues thank you, thank you.
But there is a BUT on this point!
With all the their skills the Medical community at large are not very cohesive nor are they experts at connecting and distributing what they know.
This is where CCF have leapt out in bringing together the whole landscape of committed and passionate expertise, then infusing this with the dynamics of a Cholangiocarcinoma patient presence at their conferences.
Step Up CCF and Stacie Lindsey
They have created a platform for the Patient, Caregiver and Advocate to not only be heard, but to also contribute to the cure equation. I have to boldly underline the significance of what CCF and Stacie have put into play. What they are doing and accomplishing is as significant as that of Immunology/Immunotherapy.
So if you have read this far then you will realise that the environment that I was immersed in, fostered a challenge within me . . . “What could I do, how could I add value to the efforts of my hosts?”
Busting out of the Ground Hog Day loop
By the time Claire and I departed Salt Lake City, I had mapped out a sketch of the Globally Connect Patient and Caregiver, and their Collective of Experiences, Knowledge and Wisdoms. This really stood out as a powerful new phenomenon that needed shape and focus, just as Immunology needs its Immunotherapies. Hmmm maybe, “Inform-munothery” could become a more significant part of the cure equation or at the very least better patient outcomes? The CCF team and environment had gifted me some direction!
But first things first, I have my Australasian family of Warriors to help
When we arrived back on the shores of “The Lands Down Under” I began formulating a plan around delivering “today’s” known Information TODAY to those who most needed it today. I needed a “Tool Kit” a Cancer Tool Kit that could be delivered into the hands of every Newly Diagnosed Cholangiocarcinoma Patient no matter where they lived, and the bigger challenge would be to ensure that they received it the very moment after being diagnosed.
A Cholangio Tool Kit and a Patient UP View
A patient interpretation and empowerment on the medical lingo of Cholangio, yes this would be the perfect centre point to a real contribution that has real results today. Yes all very idealistic I know, but everything has to start somewhere.
Both the Cholangio Tool Kit and a separate Cancer Tool Kit Series have been trialed
I have now created enough shape and intent within Australasia and in my own world confidently hint that it’s probably ready to be exposed far more widely.
It is our aspirations that what we do contributes to better patient outcomes and more people using the word cure in the same line as Cholangiocarcinoma – such a treacherous and totally unnecessary disease that impacts so many more than just the patient.
Why did I write this post?
The one person I did not meet at the CCF Annual Conference was Stacie Lindsey, I met many of her amazing team who looked after Claire and I in a way that humbled us. I never thanked Stacie Lindsey, but somehow I always felt that in some way, Claire and I would repay her beyond just words. I hope that what Claire and I are doing provides some level of satisfaction to Stacie and the CCF board for extending scholarship position to me, it is a very proactive and unselfish initiative that will be rewarded.
THANK YOU so much Stacie and also your amazing CCF team.
Steve and Claire Holmes