#1 Introduction: The Cancer Care Journey, an Insights Map of Lived Experiences.
Insights Developed By Victoria and The Carer Mentor Kinship
Hello, Dear Readers and new members of the Carer Mentor Community!
A little reminder of an article I wrote in January that’s the premise for a significant amount of my writing work this year: ‘Why iCARE about Cancer. Past and present events that underscore World Cancer Day for me.’
For World Cancer Day (February 4th), I collaborated with other writers/creators to publish iCARE: The Cancer Anthology for and by those with cancer and their caregivers (aka everyone around them).
Today, this empathy and inspiration focused on Cancer continues with ‘The Cancer Care Journey.’ I'm building an evolving reference map of insights1 and enlisting collaboration support through a new Carer Mentor Kinship initiative2.
The focus is not only on the person diagnosed with cancer but also on the caregiver, friends, family, doctors, nurses, and broader care support.
The aim is to provide a big-picture overview leveraging insights from many sources, e.g. my personal experiences, the iCARE: Cancer Anthology, the Carer Mentor Kinship (support network), Macmillan Cancer Support, Carers UK and other published evidence/peer-reviewed articles and experts.
I hope the Carer Mentor Kinship can explore these insights further through collaborations.
This is a big-picture opportunity for us to consolidate our experiences to serve others. This is not about statistics or numbers.
It’s about sharing chapters from our experiences to build more actionable insights, questions, and tips and explore the different facets of the cancer care journey in greater depth.
The information here is NOT medical advice (always seek advice from your doctor).3
The Cancer Care journey is founded on lived experiences. The insights involve more than ‘just’ the medical treatment/interventions. For example, it’s about
the human experiences of how we navigate Cancer.
how we, as the patient/caregiver/friend/family, engage with doctors, medical professionals and support organisations, and they with us, to optimise our care, health, and outcomes
actions we can do or questions we can ask to minimise potential disconnects in information/communication
building stronger relationships through trust and alignment
seeing the big picture and details to understand what we need to know to empower, support and advocate for ourselves, our friends, and our family along the Cancer Care Journey.
Why am I building this overarching Cancer Care Journey?
The short answer is, ‘Because it’s personal, and I can. I can envisage it and how it can be used. It’s what I would have wanted a decade ago.
I know that when I’m informed by other people’s personal experiences or find evidence that is meaningful to our situation, I can formulate better questions, discuss and align them with whomever I’m supporting, and engage with doctors or others so that we can better understand/get more comfortable with what’s happening.
The BIGGEST hurdle as a carer since 2015/16 (when Dad was diagnosed with bladder cancer on top of everything else he had) was the tsunami of information.
Even with my science background and rudimentary medical knowledge, it was a challenge. I sifted through booklets, websites, and the ‘just read this-ers’ to decipher how the information applied to us, always double-checking the validity and evidence-based premise for the recommendations.
There could be a disconnect between what a doctor says and someone’s understanding. Or a person’s symptoms could be so overwhelming that they’re unable to process and engage with doctors. Maybe the wife/husband/daughter with them is overwhelmed, too?
The dynamics of an initial consultation can be stressful with doctors. We may be navigating information hurdles AND trying to decipher how ‘good’ the doctor is. The doctor (GP in the UK) is probably trying to tread gently, not alarm us, and identify red flags to action within the shortened time they have these days.
These are just a few of the stress factors and risks at the start of a cancer journey. We’ve experienced many more, and it’s been painful repeating this rollercoaster, not just once but a few times, directly or as a ‘care-giving-support’ for others at a distance.
When we’ve learnt some lessons and have our go-to questions and insights, we become a resource for others! This is why we need to share our lived experiences.
‘The Cancer Care Journey’ is a map of insights, lived experiences, and a reference index.
It’s not just about sharing pragmatic facts and information. It’s an anthology of human experiences: real-deal emotions, personal stories and even humour.
The Diagnosis and Treatment Pathway4
Traditionally, we — I mean, everyone involved in someone’s cancer journey—have been focused on each medical step, event and intervention.
Of course, this is the central axis of action. However, there is now a greater acknowledgement and broader understanding of the needs of cancer patients.
It may be because, like my father, the patient may be diagnosed with other chronic illnesses like congestive heart failure, vascular dementia or other infections/diseases.
However, we need to consider more than a patient's medical profile. The most significant shift is the need to see the whole patient.
As World Cancer Day 2025 highlighted, cancer is not about ‘treating it’ as an isolated ‘thing’ to be solved. It’s about seeing, understanding, and treating the whole person, including, by extension, the relationships with people close to them—the Broader Context and Cancer Care Journey.
Broader Context considerations can include:
Friends/Family and Caregivers - the relationships, dynamics and role in the cancer journey.
Daily life activities and lifestyle
Mental wellbeing,
Physical well-being, diet, exercise
Cancer awareness/knowledge and access to references and resources
Care support: nurse, nutritionist, occupational therapist, counsellor.
Work, work flexibility, income and finances
Life administration: Wills, Powers of Attorney, Executors.
Medical Information: Emergency Contacts, History, Allergies, Medications, Operations, Doctors
Considering this broader context, we can start to appreciate how unique each person’s journey is.
A care journey is not just about the differences between cancer types and how they’re treated. It’s also about the personal context.
It’s also about the patient's environment and location.
Access to interventions/medications, nursing care, and support for basic everyday activities and necessities differ globally. Political, environmental, social, technological, legal, and environmental factors can influence a care journey.
The kaleidoscope of experiences is infinite at every step.
This is why I’m building The Cancer Care Journey as an evolving dynamic reference map of insights.
Right now, I’ll continue to work on building insights from existing published resources (other publications on Substack and experts/organisations).
I’m inviting members of the Carer Mentor community to join the Carer Mentor Kinship so that we can collaborate and explore specific aspects of this Cancer Care Journey together. Stay tuned for more information on Build2Care efforts and the Carer Mentor Kinship.
A Final Word
Today, more than ever, the most potent kindness can be connecting and empathising with others through our lived experiences and inspiring each other.
Click here to go to iCARE: Cancer Care Journey
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INSIGHT: Merriam-Webster Definition and Meaning: 1: the power or act of seeing into a situation: penetration. 2: the act or result of apprehending the inner nature of things or of seeing intuitively.
Victoria’s definition. In qualitative market research (my first job) and then in commercial strategy later, we referred to ‘insight’ as the ‘A-ha’ or ‘So what’ meaning/reflection or connection of dots that would enable us to unlock a new opportunity or untapped potential. So, it’s not a simple observation or fact. It can be highly subjective yet still strongly evidence-based. It can give you a lightbulb moment that helps you in some way.
The Carer Mentor Kinship includes patients/carers, caregivers, family and friends/medically trained doctors, and nurses with personal experience of Cancer. These members of the Carer Mentor community have chosen to upgrade their subscriptions and accepted my invitation to collaborate.
DISCLAIMER: The information in Carer Mentor and these articles are not medical advice or therapy. Please seek medical advice and support from your care team. While medical doctors may be included within the Carer Mentor Kinship, their insights here are not meant as medical advice about diagnosis or treatment.
Adapted from the Macmillan Cancer Support: Times of need and cancer
I can't offer a definitive guide for the diagnosis, treatment and care of Cancer because there are infinite scenarios.
I hope this framework gives us a structure to anchor our discussions and share details.
Each step will have insights separated by cancer type within it.
Hi Victoria - Great article, and a great concept. It's consistent with the purpose of my forthcoming book -- increase awareness of colorectal cancer and help people understand what it's like to be diagnosed and treated and try to survive. I clicked to subscribe, and I look forward to reading more.