The Story
Narrative arc from diagnosis through surgery, recovery, and chronic lymphoedema, explicitly separating lived experience from clinically verified record claims.
I'm a clinician or researcher
Provenance, confidence levels, and the source register.
This site distinguishes lived experience from medical documentation.Deze site onderscheidt geleefde ervaring van medische documentatie.
Start with theseBegin hiermee
The sections written with this question in mind.De onderdelen geschreven met deze vraag in gedachten.
Cancer
Diagnosis, surgery, treatment decisions, fertility, and recovery, told in nine parts.
Body of Evidence
Visualized measurement data, timeline, and photography with progressive disclosure.
Advocacy
System-change essays on patient agency, healthcare design, and dignity.
Start Here
Entry point guiding new visitors to the journey that fits why they came.
12 chaptershoofdstukken
Everything tagged for this path.Alles wat aan dit pad is gekoppeld.
1 Patient Agency What it takes for a patient to stay a decision-maker inside a system built around cases, not people.
MY EXPERIENCE
What happened
Agency became concrete when I learned to ask for wording corrections, written plans, copies, dates, and specificity before accepting what a file said about me.
INTERPRETATION
What I know now
Agency means participating in the record, not simply being recorded by it.
MY EXPERIENCE
Must stay verbatim
Agency is not being offered a form. Agency is having a meaningful choice before the form becomes the record.
2 System Design Where scheduling, referral pathways, and record-keeping quietly shift the burden back onto the patient.
MEDICAL RECORD
What happened
A GP referral could be clinically sensible and still fail at reception because insurer contracting required a different route.
INTERPRETATION
What I know now
A clinically sensible path and an administratively permitted path can diverge.
MY EXPERIENCE
Must stay verbatim
The patient should not be the API between institutions.
6 The Change We Need Concrete asks for clinicians, employers, and systems designers — and how to get involved.
INTERPRETATION
Top five changes
Every significant referral should identify the next owner and expected timeframe. Important treatment and consent decisions should be provided in accessible writing. Correction mechanisms should be simple and traceable. Return-to-work should be designed around function, not appearance. Chronic-condition pathways should account for time, money, and administrative labor of self-management.
MY EXPERIENCE
Public-safe wording
I am not asking systems to remove uncertainty. I am asking them not to manufacture avoidable uncertainty.
MY EXPERIENCE
Must stay verbatim
Do not make the sick person carry the coordination failure.
1 Before Life before anything changed.
MY EXPERIENCE
What happened
Before the diagnosis I was highly functional and work-focused. I was accustomed to pushing through discomfort and keeping life moving. The first significant physical warning I remember was abnormal bleeding and cramping while travelling in Greece in early 2019.
MY EXPERIENCE
What I knew then
Very little. I could tell something was wrong, but I kept looking for ordinary explanations.
INTERPRETATION
What I know now
The important part was not that I failed to understand cancer. I was not qualified to diagnose myself. The important part was that my body had changed and deserved investigation.
INTERPRETATION
What I wish someone had told me
You do not need certainty before you ask for care. A symptom does not have to become dramatic before it deserves attention.
MEDICAL RECORD
Documentation
Journal notes, GP/referral sequence, PAP 3B result, colposcopy and biopsy records where available.
2 Something Changed The first signs that something was not right.
MY EXPERIENCE
What happened
On Syros I noticed vaginal bleeding while out with my sister. I went into a bathroom, saw the blood and improvised protection with toilet paper. Then I went back outside. That detail matters because it captures how I lived then: contain the disruption first, ask questions later.
MY EXPERIENCE
What I knew then
Only that it was abnormal.
INTERPRETATION
What I know now
Continuing the day did not make the symptom less real.
INTERPRETATION
What I wish someone had told me
Your body does not need permission from your calendar to interrupt you.
3 Diagnosis Receiving the diagnosis and what followed immediately after.
MY EXPERIENCE
What happened
At the end of June 2019 the hospital called while I was travelling to a business meeting in Utrecht. I was initially on a crowded bus and asked them to call me back. When they did, I stepped away from the commute and was told the biopsy showed an aggressive cervical tumour, an adenocarcinoma. The diagnosis was later described as Stage IIB / Stage 2B.
MY EXPERIENCE
What I remember most
The world continuing normally around me. My work calendar still had meetings in it. Traffic still moved. Other people continued their day. That was one of the first lessons of serious illness: your world can stop without the world stopping.
MY EXPERIENCE
What I knew then
Cancer. I did not yet understand treatment, staging, prognosis or what the diagnosis would cost physically.
INTERPRETATION
What I wish someone had told me
You are unlikely to absorb everything said in those first conversations. Write things down. Take someone with you. Ask for copies.
4 Treatment The treatment decisions, surgery, and what they involved.
MEDICAL RECORD
What happened
I was presented with major treatment decisions, including chemoradiation and radical surgery. I eventually underwent a radical hysterectomy on 23 August 2019 with lymph-node removal. My ovaries were preserved. After surgery I had a catheter and needed bladder retraining. I was restricted in what I could lift and how I could move. Postoperative pathology did not lead to chemotherapy or radiation at that time.
MY EXPERIENCE
What surprised me
How much of cancer treatment is not the operation itself. It is forms, consent language, waiting, fertility decisions, pathology, bladder function, mobility, dependency, work clearance and the uncertainty after everyone else thinks the "treatment" is over.
MY EXPERIENCE
Side effects and consequences I am comfortable naming
Loss of my uterus and the ability to carry a pregnancy. Postoperative catheterization. Changed bladder sensation and retraining. Physical weakness and lifting restrictions. Later lymphatic complications following lymph-node removal.
5 World Kept Moving Work, relationships, and daily life continuing around the illness.
MY EXPERIENCE
What happened
Work did not pause. I received the diagnosis on the way to a business meeting. While waiting for surgery, career opportunities and work events continued. After surgery I wanted to return faster than my body was ready for. Occupational health subsequently classified me as not fit for work for a period. Bills, meals, home life, relationships and administrative responsibilities also continued.
INTERPRETATION
What I know now
Serious illness did not remove ordinary life. It made ordinary life harder to carry.
6 The Hard Part The waiting, uncertainty, and hardest stretch of the experience.
MY EXPERIENCE
What happened
I would not reduce the entire experience to one moment. One of the hardest periods was the waiting after surgery for final pathology. I was home with a catheter, recovering from radical surgery, while waiting for calls about what had been found. Sleep became fragmented. I woke reaching for the phone. Eventually I was told there was no indication for chemotherapy or radiation at that time. In the same period, I was also told that the hysterectomy might not have been necessary.
INTERPRETATION
What I know now
Relief and grief arrived in the same conversation.
7 After Isn't After Why recovery did not mean the story was over.
MY EXPERIENCE
What happened
Recovery was not the clean ending I had expected. I thought surgery would create a before and after. Instead there were layers: catheter removal, bladder retraining, physical weakness, occupational-health restrictions, fertility grief, fear around follow-up, the pressure to return to work, the need to appear functional, and years later, lymphoedema.
INTERPRETATION
What I know now
The body can leave hospital long before it leaves the experience.
8 What Stayed The lasting physical and emotional effects.
MEDICAL RECORD
Physical changes
The surgery permanently changed my body. My uterus was removed. Lymph nodes were removed. My relationship with bladder signals changed during recovery. Years later, my right leg developed chronic lymphoedema.
MY EXPERIENCE
Mental changes
I became much more attentive to wording, consent, records and what institutions write about a patient.
INTERPRETATION
What I know now
I also became more aware of the difference between appearing capable and actually having capacity.
9 Who I Became How the experience changed identity and outlook.
INTERPRETATION
What I know now
I would avoid turning this into "cancer made me a better person." It did not. Cancer made certain bargains impossible to ignore. I became less willing to give institutions, work or other people automatic authority over what my body meant. I became more deliberate about consent, documentation, boundaries and where I spend my energy.
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