Equipping Our Patients For Survival

A Message Before You Begin: Find You, Find Your Rhythm, Find Your Power

By Steve Holmes, Fellow Patient.

Before you begin this difficult journey, take a moment to understand yourself. You must know your strengths and your limits—what is within your control and what is not. This is how you will become an effective patient.

There is nothing in life—or in the science of life—that isn’t vulnerable to being knocked off its precarious pedestal of certainty, including a cancer prognosis and the statistics that support it. The only certainty in life or science is that there is no certainty—only obstacles and possibilities, for that is the fabric from which life is made. Therefore, our opportunity will always be to see obstacles as they are, not as we fear. Once we reach this awareness, we begin to see possibilities within—our opportunities—and the obstacle reveals a new way forward—our new challenge.

The next step is simple but never easy: see those possibilities, find your rhythm, and systematically begin turning them into your reality, one small step at a time.

A diary entry, something that helped me see the way:

Thoughts Are Real Things: Possibilities That Inspire and Ignite New Realities — Give Them Life, Give Them My Fullest Attention, Then Get Out of Their Way and Let Them Rise Up Without Restriction. Thoughts reveal the way, forging a pathway between the improbable and the impossible, leading to that place where dreams can find their reality.

• Be a little unrealistic—often: Feed my dreams and see their possibilities.
• Do that one thing—that one possibility.
• Be remarkable at it: Find the great beyond the good.
• Be resourceful with it: Be bold, be willing, be creatively persistent.
• Add value with it: Lead with responsibility and accountability.
• Surround it with people of great character and talent: People who can lift it to its higher realities. Talent without character is merely a shooting star, but together, they lift possibilities to higher realities.

This is how my ‘Hope’ found its reality and became my bridge back to the safety of solid ground and my family.

To conclude: Helping you help yourself is the greatest gift I can give—it is the greatest gift any of us can give. You too can amplify this amazing human resource to your benefit by helping those who are helping you succeed. Be the best patient you can be, so together you can rise above the prognosis, and above what you think you are capable of.

Warm regards,
Steve
www.steveholmes.net.au
Cholangiocarcinoma Survivor (Late-Stage – Stage 4)

Patient-Led Functional Cancer Research and Advocacy Foundation

• Patient-led means we ensure that the patient’s capacity to respond is represented at every level,
• Functional means simplifying the science and knowledge into a format that better equips and empowers patients to more effectively respond,
• Research means we research the research, target the gaps, and fill unmet needs. We initiate, lead, and support specific research that benefits today’s patient survival,
• Advocacy Foundation means we centralise the communities of science, healthcare, and patient support around the patient effort at their center.

A Mission of Turning Today’s Science into Today’s Patient Survival

We raise funds to turn cutting-edge research into tangible benefits for cholangiocarcinoma patients. We provide a clear pathway and contribution model that blends the healthcare ‘standard of care’ with the resilience of newly diagnosed patients and the expertise of medical professionals and survivors who have faced similar challenges.

Our support resources include the Optimal Patient Response (OPR) initiative, featuring Patient Navigator Journals, peer-to-peer tele-support, and navigator, mentor, and coaching programs. These are further enhanced by CCF-trained hospital ambassadors, a patient-endorsed medical professional registry, and the Second Opinion Project, connecting patients with medical experts.

Additionally, we lead efforts like the Clinical Trial Connector – Mutational Matchmakers to expand survival options and empower patients to make informed decisions.

We go beyond harnessing, integrating, and applying

Empowering the Toolkit: Our foundation provides a wide range of support resources for patients, caregivers, and their communities. These include patient-integrated response processes, peer-to-peer tele-support, navigators and coaches, patient-endorsed medical professional registries, the Second Opinion Project, and the Clinical Trial Connector. Each initiative is designed to expand survival options and provide patients with tailored, comprehensive support.

We Target and Bridge the Gaps

Lead, initiate, and support research and studies that benefit today’s patient toolkit. While science strives for tomorrow’s cure, we ensure that today’s science is fully integrated and applied where it is needed most—today’s patients. By doing so, we also identify and address currently overlooked areas, and take a unique responsibility to lead research and study efforts that meet our objectives – Improving today’s patient survival today!

Addressing The Unknowns

Newly diagnosed patients often don’t know what they need to know—yet absolutely must. We bridge these gaps by providing clear pathways and response strategies designed to improve cholangiocarcinoma outcomes.

Collaborative Efforts

Contributing To The Cutting-Edge

We work face-to-face at every level, strengthening our efforts through collaborations with medical professionals, researchers, and industry partners. These partnerships enhance our effectiveness and accelerate progress, all with the goal of “Empower The patient – Increase Survival: Empower Their Community –  Exponentially Increase Survival.”

We Work to Compliment Medical Care

By Bridging the Gaps

While medical professionals excel at diagnosing, treating, and caring for patients, they are not as adept at preparing patients for the broader challenges of a cancer diagnosis. With our deep, lived experience and understanding of cholangiocarcinoma, we focus on preparing and supporting patients as they respond to their diagnosis and prognosis.

Our Steadfast Commitment

“Because a thing seems difficult for you, do not think it impossible.” — Marcus Aurelius

“We remain steadfast in our mission, equipping and empowering patients with the tools they need to effectively respond to cholangiocarcinoma. We continue to share information and stories of resilience that inspire and rally support, committed to a future where no life is lost to this disease.” —  Steve Holmes