Our problems created a Tool Kit
As Newly diagnosed Cancer Patient I needed help & guidance fast, but there was none.
It was November 2016 when I was diagnosed with a statistically unsurvivable cancer.
In what seemed like a microsecond moment I fell from that proverbial cliff, free falling at a paralysing pace toward an unknown impact. The impact of this fall brought about the reality that I was now a newly diagnosed cancer patient and my wife Claire the unexpected & very unprepared caregiver. Then another more shocking realisation hit, that this was only the first impact as I now had a diagnosis and terminal prognosis that could not be ignored.
I quickly accepted the diagnosis, but I did not or could not accept the prognosis. My brother Graeme had been in this same exact position just 4 years before and since lost his battle surviving 23 months. My mind frantically searched for solid ground, somewhere within me to regain any sense of control. The intimidation from the dire statistics had me buried before I had drawn my last breath.
Claire and I were now under considerable pressure and very low on time, we needed help in how to deal with all this. An unprepared mind can easily fall victim to collective weight of the many well meaning and misguided words of encouragement. These words are like trojan horses and can quickly overpower the unprepared and disorganised mind, I needed help from those who had succeeded in overcoming the odds, words of experience to guide me back to solid ground, but there was none within reach, or so it seemed.
A Solution within
I created my own solution and then others wanted it too.
Be a good friend, be an asset
A good friend told me very early on to document my journey so as not to forget details and experiences. What wise words Kev, thank you! Kev’s advice unwittingly sparked something from deep within me – a spring of unconditional willingness was unshackled.
Documenting and journaling is so engaging, it opened up pathways and created a “Solution Culture” to not only survive but thrive from the inside out. It gave me a sense of control, it galvanised my purpose and gave me direction beyond the ugliness of the threatening shadows.
As I began documenting my journey, it immediately opened up the floodgates of ‘ME’ and all the chaotic thoughts that were just waiting to break free and wreak havoc. I needed to fix this quickly, and the answer was to create compartments – ‘Chapters of ME’. Somewhere to file my thoughts to declutter and free up my mind. The process of writing every thought out of my head had begun, an almost indiscriminate thought dumping process, it brought on many tears, it was so raw and personal, a total empty out of me.
I would never have given myself this opportunity if not for cancer
I became very self absorbed, it is such a surreal experience that transcended me into my own ‘Alice in Wonderland’ type world, filled with exciting possibilities and realities.
Consumed by the task of chaptering, I was totally distracted from the problem of dying
A warm friendly energy flowed through my whole being, a sense of control and poise that seemed to need no proof or conditions.
With this resurgence I began sifting and simplifying, organising what mattered and ditching what didn’t. As I progressed I redefined the ‘Chapters of ME’ to better represent my life to date and where I wanted it to go. My mind was becoming free, more than my pre cancer days.
Discovering a Globally Connected Patient and Caregiver
Claire and I participated in many global Patient & Caregiver” communities, where we were able to share and learn from many others like ourselves. This sharpened our knowledge becoming more familiar with terminologies and information that could help.
The Globally Connected Patient highlighted a solution
As our learning and familiarity increased so did our understanding and appreciation for the value of the “Globally Connected Patient and Caregiver.” As good as this was, we formed the opinion that something very basic had fallen between the cracks overlooked in the rush for research breakthroughs and donation dollars to fund them. There appeared to be no basic resource to guide the patient and caregiver through the early treacherous waters of a cancer diagnosis.
It is vital to catch the cancer early before it spreads, and the same is true in obtaining experienced guidance early before the cancer noise spreads
Becoming more connected meant that the news of my recovery and survival spread faster and to a wider demographic. Newly diagnosed patients and their caregivers began to reach out to Claire and I desperately seeking direction and guidance. We both began to feel the pressure of a new responsibility. At the same time many well intentioned family and friends began urging us to move on with our lives away from the carnage of cancer.
Claire and I simply could not abandon those like us, it simply was not in our DNA to just walk away, we had to help – but how?
The Tool Kit Solution
All we had was our own experience and what we had learnt, I did not want to be trapped into offering advice and potentially false hope outside of this paradigm. Each time someone made contact I struggled to retain consistency in my words, so I decided to give them life and meaning by writing them down into organised priorities and tasks. My words needed to be easily shareable and more importantly, I understood that as a patient under pressure reading becomes incredibly difficult, as words just seem to leap around the page. A basic very simple Tool Kit format with bigger print and less words fitted my criteria, this was exactly what I had needed. Claire’s marathon search efforts could have been reduced down to a more efficient few clicks on Google or perhaps something much easier from our early medical touch points such as Doctors, Surgeons and Oncologists. This Tool Kit has been born out of our necessity and has now grown with us to mature into something far greater than my individual needs.
People impacted by a serious cancer diagnosis are people under immense pressure, they need experienced guidance and they need simplicity at their fingertips
A realisation that our hard earned knowledge and success was also a responsibility become part of the solution. The Tool Kits were part of our solution and could also be part of others like us. These tool kits are vital conduits, a type of gift from old too new.
A Cancer Tool Kit – a stepping stone to Sanity
I began my Tool Kit journey out of necessity for my own sanity and survival, and to support Claire’s enormous and relentless efforts.
The Cancer Tool Kits were born and evolved out of the “Chapters of ME” – they helped me become the best patient that I could possibly be. They also provided a foundation for me to develop an X factor environment around me, an environment that could inspire the experts to rise above their normal best. I was always very aware that if I was ever going to make it back to solid ground and defy the statistics, then I would need to pull off a ‘Walk on Water’ performance. For this to happen everything and everyone around me would have to sync and harmonise in a collective effort.
A Global Issue 24/7 with no boundaries
Patient and Caregivers from around the globe began to contact us, it was then that we learn’t that cancer is 24/7 and that our Tool Kits have no boundary’s, financially or geographically.
Such a simple and obvious concept, yet surprisingly overlooked.
Tool Kit’s do the thinking and guiding for those least able.
The momentum of many in sync around one curative plan is a powerful expression that often defies logic in its result.
Cancer Tool Kits help sync and harmonise the collective effort around the patient, galvanising purpose and direction
Each Kit is specifically tailored around all the different people that are impacted or touched by a patients cancer diagnosis. They help prioritise the thinking and tasks required, they re-orientate and provide the road map and the tools necessary for the journey ahead.
All patients deserve the chance to not only survive but thrive, and no longer be a health hostage or refugee. Our goal is to equip every patient with a resource that helps them rise up and reclaim their lives and become part of the solution.
What’s in a second Chance?
I am now that Second Chance Cowboy, the kid who has regained his dreams to grow up strong, ride horses and wear cowboy hats!
So what’s in my dream machine now?
Life is a one time gift opportunity which I get to have a second go at. Having a pure unconditional willingness to live everyday with the intent to do ‘Remarkable Resourceful’ things that add value and make a difference is special. I hope that what I do with my added turn at life is significant enough, for my children to want to carry forward this same opportunity and do their own remarkable resourceful things. This thought process is very heart warming, uplifting and empowering – it drives and fulfils my opportunity at life.
We may not be able to stop people falling off cliffs but we can be ready at the bottom to give them “The Patient Collectives” Cancer Tool Kits, a gift of experience to set them on the right direction.
Please help Claire and I gift this forward to where it’s most needed, and it is needed now!
We are tasked with globally equipping and empowering Health Professionals, Patients, their support networks, and the corporate industries and workplaces that we share.
Steve and Claire
Patient & Caregiver
Founders of The Patient Collective and the Cancer Tool Kit.
Address to either “Claire” or “Steve”
Phone Claire +61431180783
Phone Steve +61415153522