iCARE: The Cancer Care Journey
For & By People who CARE about Cancer. A Reference Index of Insights.
The Cancer Care Journey is an evolving reference map of insights that goes beyond the core patient diagnosis and medical treatment pathway.
This map of insights focuses not only on the person diagnosed with cancer but also includes the 360’ perspective and relationships of all involved: 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 community support network, Macmillan Cancer Support, Carers UK and other experts/organisations.
The Cancer Care Journey is part of the broader Carer Mentor: Cancer Articles & Resources.
The iCARE Stack of Carer Mentor is a hub of practical tools, resources, and insights best viewed on the desktop version of the website.
Premise for this Cancer Project (2025)
January The premise: ‘Why iCARE about Cancer. Past and present events that underscore World Cancer Day for me.’
April. Introduction to The Cancer Care Journey, an Insights Map of Lived Experiences.
Cancer Care: The Initial Journey and Long Term
To writers and creators referenced: please let me know if you would like me to edit the reference to your work.
A key pillar of the larger project has been the iCARE Anthology on 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).
Cancer Care Journey Table of Contents
Initial Diagnosis and Treatment
Long-term, including monitoring and further treatment.
Disclaimer: The information and recommendations here are not intended as medical advice. I recommend consulting your doctor and care team to discuss your treatment and address any health concerns you may have. Every person’s situation is unique.
Initial Diagnosis and Treatment
1. Before Diagnosis
INSIGHT: National screening programs are essential preventive measures. Be aware of the red flag symptoms of cancer. If something feels abnormal, get checked, don’t wait to be asked. References:
Carer Mentor: Bowel Cancer Awareness Month (UK). What are the symptoms? How do I get tested? Is there a screening programme?
2. Tests
INSIGHT: Demystify the process to ask informed questions and reclaim some agency. For example, could a general anaesthetic for an invasive procedure, a biopsy, be right for you? Could you talk to your doctor? References:
- and :Talking prostate cancer with Guy Gratton: Diagnosis, treatment & the road ahead (Prostate Cancer) at 8mins44 talking about injections and general anaesthetics.
3. Diagnosis
INSIGHT: Try naming the cancer as a character, to ‘control’ the narrative, and dissociate yourself from it. References:
- : ‘Meet my Brussel Sprout’ (Breast cancer)
- : ‘Flat or Bust.’ “I got through that first cancer experience in 2011 casting myself as Victorious Val, protagonist and hero, and the cancer as Doug, arch-nemesis and villain. I decided I’d be the one who controlled the narrative. I’m a writer after all. So that made sense.’ (Breast cancer)
INSIGHT: Closing any patient-physician disconnects is about partnership-building, trust and empathy—not productivity. References:
- : ‘Letter to My New Cancer Patients: What I Want You to Know as We Begin This Journey’ (Oncologist and Pharmacist)
4. Post Diagnosis
INSIGHT: The tsunami of information and actions can be overwhelming. You don’t need to know everything all at once. Breathe. Write out and group questions, and talk to support organisation experts who can tailor answers to your unique situation. Reference:
Victoria’s personal experience: Amidst the numerous booklets and information, the maze of benefits you can be entitled to, Cancer support groups/organisations are valuable translators and navigators. There is a general template map, but every experience and path is unique. Personalised advice is priceless.
Cancer Information and Support Organisations UK, US and Canada
5. Treatment
INSIGHT: We all have preconceptions about chemo/treatment1 . Each person’s experience is unique. Try to find what helps you feel some level of control. Reference:
- : So what's chemo REALLY like? what shocked me about Cycle 1 (with tips & a hair update) “Prep helps me (and maybe you) feel in control
I am a control freak, unfortunately. Illness, and cancer especially, challenges that. Preparing myself allowed me to feel like an active participator rather than a passive patient.” (Breast Cancer)
INSIGHT: Caregiver-experience-based innovations, such as CareAline, can serve as lifelines of support. You’re not alone. Online and local support groups and forums could be helpful. References:
- : My Daughter's Central Line Was Her Lifeline During Cancer Treatment. ‘CareAline’ became my version of a lifeline. (Neuroblastoma, a form of paediatric cancer.')
“I didn’t expect to find something that existed for my exact problem. I idiotically assumed if there was a solution, I would have already been given it.”
“With astonishment, I reread the site. I couldn’t believe that there was a family making products like this for children like June. I clicked on and scoured all the links on the page. There was a video of a mother discussing why she and her partner started the business of CareAline.
I wasn’t alone.
There were others.
Other moms with children who had cancer.
Other children like June with neuroblastoma.”
CareAline Advancing Safety and Comfort through Innovation Kezia Fitzgerald
Keeping Patients Safe. Clinically Proven Securement for PICC Lines, Central Lines, Feeding Tubes, and More. Our vascular access securement garments are clinically proven to reduce complications and improve safety for patients of all ages with implanted medical lines and tubes.
Founded by Kezia Fitzgerald – two time cancer survivor and bereaved cancer mom – CareAline takes the patient perspective and uses it to drive clinical change in the hospital system to increase safety and comfort for patients with complex medical needs.
Long-Term incl. monitoring and further treatment.
INSIGHT: Rediscovering yourself and healing, both physically and mentally, is a profound, messy yet essential shift after the treadmill of treatment actions. Reference:
- : RECOVERY TIME Giving Oneself Gentle Permission to Heal and Seek Support is not Easy in our Culture (Colorectal Cancer)
INSIGHT: ‘Cancer Survivorship’ is a problematic phrase to swallow for some. References:
- : Redefining Survivor Why the Language of Cancer Survivorship Doesn’t Fit Everyone. “Cancer survivor has always been a sensitive term for me. I’ve never thought of myself that way, and I’ve never felt comfortable using the words. Even “survivorship” feels uneasy, both premature and overly simplistic. It's a term that can feel empowering to some, but to others, it can feel like an ill-fitting badge for a story still being written. It doesn’t fully capture the ongoing reality so many of us face: the long-term side effects, the ever-present fear of recurrence, and the lingering sense of vulnerability that persists long after treatment ends.” (Breast cancer. Jeannie was a caregiver to her husband, who had nonHodgkin’s lymphoma).
Victoria: This is not a term I can relate to because it doesn’t take into account the broader health context. It may be well-suited for those younger than my parents. However, for me, phrases like ‘below detectable levels,’ or ‘unchanged, ’ ‘controlled, ’ or even ‘the symptoms are managed and he’s comfortable,’ are more apt.
INSIGHT: ‘Never Out of the Woods’, ‘Scanxiety’, and ‘adminnoyance’, Terms that conjure an immediate visceral response from those in the know. There is a persistent state of being ‘in limbo’, which is easily exacerbated by delays and miscommunications. References:
- : ‘Never Out of the Woods’ “While he soldiered on, I struggled with anxiety about his health and our future, in the back of my mind. Giving myself grace and letting go of the fear and anger toward the cancer was hard. Few people I knew understood this station in the cancer journey and it was easy to feel alone.” (Caregiver of her husband, who has Breast Cancer).
- : Scanxiety Scanxiety is a well used word in cancer survivorship, but I have added a new one - adminnoyance. What can we do on each side of the doctor's desk, to minimise one and maybe even abolish the other? “when you’re scanxious, you are more sensitive to delays and miscommunication”
INSIGHT: Test results require context (e.g. thresholds, ranges, levels of detection) so patients can ‘right-frame’ results and try to calibrate their emotions accordingly over the long term. References:
An eye-opening explainer by Anthony Feig: PSA PANIC! An Explainer Your post-treatment numbers were fine. Then they went up. Your doc's not worried. What gives? (Prostate Cancer).
INSIGHT: Realigning personal values and purpose enables richer, bolder, more confident living in the here and now. References:
- : ‘No Regrets. Staring at Death Helped Me See Life Instead’ (Stage 4 cervical cancer, and then Breast Cancer)
- : ‘You Don’t Have to Die to Learn These Lessons’ “After my diagnosis last year, I did a deep dive into several things — my purpose in life, healing, and death.”
“I’ve learned that there is nothing to fear. And because I know this, I can live life more intuitively, more deeply, and more boldly.
And that’s what we all want, right? So, why do we wait until our lives are threatened before truly learning this? Is it even possible to really learn these things if we’re healthy?’ (Stage 4 Breast Cancer)
INSIGHT: Clarifying your guiding principles, criteria, and wishes can make treatment decisions and other choices more straightforward. There is no one-size-fits-all. It’s personal. Reference:
- : #36 Ring the Bell. No Regrets “I want to do everything possible to fight this cancer. I never want to face defeat and sadly say, “If only I had done…” Instead, if I eventually fall to cancer, I want to be able to stand proud and proclaim, “I did everything I could to beat this. I have no regrets.”
Viewed from that perspective, I made the decision: Complete hormone therapy; it’s worked for many years for many men. Take the injections. Have no regrets. (Prostate Cancer)
iCARE: Cancer Publications Directory
These publications share experiences of Cancer. The authors/creators are passionate about raising awareness of Cancer and supporting each other.
The Cancer Care Journey is an index reference you can access whenever/however you wish.
I recommend bookmarking this index as a Go-To reference.
I’ll continue to work on building insights from my experiences and existing published resources (other publications on Substack and experts/organisations).
Today, more than ever, the most potent kindness lies in connecting with others through empathy, drawing on our shared lived experiences.
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Treatment: there are many different therapies and interventions for cancer. My advice as a non-medic: never assume you know what the doctor is talking about. Try to avoid misinterpretations. Ask them to write the names of things down and draw a timeline of events to make things easier.