The Story
Narrative arc from diagnosis through surgery, recovery, and chronic lymphoedema, explicitly separating lived experience from clinically verified record claims.
Health · Recovery · AgencyGezondheid · Herstel · Zeggenschap
My body changed.
My life had to change with it.Mijn lichaam veranderde.
Mijn leven moest mee veranderen.
This is not a cancer diary. It is what I learned about living inside a body that no longer behaves predictably, and inside systems that were not designed for the person in the middle of them.Dit is geen kankerdagboek. Het is wat ik leerde over leven in een lichaam dat zich niet meer voorspelbaar gedraagt, en in systemen die niet ontworpen zijn voor de persoon die er middenin staat.
This site distinguishes lived experience from medical documentation.Deze site onderscheidt geleefde ervaring van medische documentatie.
What brought you here?Wat bracht je hier?
Come in through your own question.Kom binnen via je eigen vraag.
The same material answers very different needs. Pick the one that fits and the section will reorder itself around you.Hetzelfde materiaal beantwoordt heel verschillende behoeften. Kies wat past en het onderdeel herschikt zich om jou heen.
The story
What happened, in order, with the medical record kept separate from the lived experience.
Cancer
Diagnosis, surgery, treatment decisions, fertility, and recovery, told in nine parts.
Lymphoedema
Resource hub covering recognition, diagnosis, measurement, compression, movement, and treatment.
Life Between Appointments
Editorial essays on daily life with chronic illness: body, clothes, work, sleep, relationships.
The knowledge
What I learned the slow way, and the parts of it you can actually use.
Start Here
Entry point guiding new visitors to the journey that fits why they came.
What I Have Learned
Reflection essays: mistakes, surprises, and things I would do differently.
Healthcare Navigation
Practical guide to referrals, specialists, appointment preparation, and record-keeping.
Body of Evidence
Visualized measurement data, timeline, and photography with progressive disclosure.
Resources
Curated external links, organized as Start Here, Go Deeper, and My Experience.
The system
What working through illness asks of a person, and what ought to change.
Health & Work
Thought leadership on disclosure, visibility versus capacity, and returning to work.
Advocacy
System-change essays on patient agency, healthcare design, and dignity.
SimultaneityGelijktijdigheid
Health did not happen instead of a life.Gezondheid gebeurde niet in plaats van een leven.
-
2019-06
Cancer diagnosis and treatment
Diagnosed with Stage IIB cervical adenocarcinoma in June 2019, following an April–June sequence of abnormal cervical smear, colposcopy, and biopsy. Underwent a radical hysterectomy with lymph-node removal on 23 August 2019; ovaries preserved. Postoperative pathology did not lead to chemotherapy or radiation at that time.
-
2019-09
Recovery and rebuilding
Postoperative recovery including catheter, bladder retraining, lifting restrictions, and a gradual return to walking and daily life; occupational health classified this period as not fit for work.
-
2023
First signs of lymphoedema
Right-leg swelling became noticeable during 2023, several years after lymph-node removal during cancer surgery, first affecting shoe fit and initially managed quietly alongside work.
-
2024-01
Lymphoedema clinically identified
A significant right-ankle/foot flare led to same-day GP referral and hospital assessment. Ultrasound excluded thrombosis; the presentation was assessed as consistent with lymphoedema, and chronic management began.
-
2024-2026
Specialist referral
Ongoing chronic lymphoedema management with compression, lymphatic treatment, movement, and tracking, with increasing effect on work, travel, and daily planning. Further specialist escalation/referral details will be added once confirmed against referral documentation.
-
2026
Health, Recovery & Agency section begins
Started building the public-facing Health, Recovery & Agency section of this site.
“Why do healthcare systems require sick people to become excellent administrators?”“Waarom verlangen zorgsystemen van zieke mensen dat ze uitstekende administrateurs worden?”What needs to changeWat er moet veranderen
A boundary, stated plainly.Een grens, duidelijk gesteld.
I read what people send me, but I cannot diagnose anyone or recommend individual treatment. Everything here is one person's account, placed next to the documents that support it. The resources page points outward to organisations that can actually advise you.Ik lees wat mensen me sturen, maar ik kan niemand diagnosticeren of individuele behandeling aanraden. Alles hier is het verslag van één persoon, naast de documenten die het onderbouwen. De pagina met hulpbronnen verwijst door naar organisaties die je daadwerkelijk kunnen adviseren.