The Story
Narrative arc from diagnosis through surgery, recovery, and chronic lymphoedema, explicitly separating lived experience from clinically verified record claims.
I was just diagnosed
Start with orientation, not the whole archive.
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.
Lymphoedema
Resource hub covering recognition, diagnosis, measurement, compression, movement, and treatment.
Healthcare Navigation
Practical guide to referrals, specialists, appointment preparation, and record-keeping.
Resources
Curated external links, organized as Start Here, Go Deeper, and My Experience.
Start Here
Entry point guiding new visitors to the journey that fits why they came.
28 chaptershoofdstukken
Everything tagged for this path.Alles wat aan dit pad is gekoppeld.
4 Access Waitlists, appointment scarcity, and what it costs to get a timely specialist referral.
MY EXPERIENCE
What happened
The clearest access failure was an out-of-network referral sequence where clinical urgency and administrative permission did not align.
INTERPRETATION
What I know now
Transitions are where responsibility becomes ambiguous unless ownership is explicit.
MY EXPERIENCE
Must stay verbatim
Every handoff needs an owner, a deadline and a receipt.
5 Dignity Being treated as a whole person, not a case, across diagnosis, treatment, and chronic management.
MY EXPERIENCE
What happened
I repeatedly needed written plans, copies, correction emails, confirmations, and access to what had been recorded.
INTERPRETATION
What I know now
The written record often determines what the next room believes.
MY EXPERIENCE
Must stay verbatim
If a record can change my care, I should be able to see what it says.
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.
1 What It Is A plain explanation of lymphoedema and why it happens.
MY EXPERIENCE
In my own words
My lymphatic system no longer moves fluid efficiently through my right leg. Fluid can accumulate in the tissues, causing swelling, heaviness, pressure and changes in how the limb feels and functions. Because pelvic lymph nodes were removed during cancer surgery, the lymphatic system has less capacity than it once had.
MEDICAL RECORD
A note on this explanation
This is a patient description, not medical instruction. The final wording here should be reviewed by a qualified lymphoedema professional before it is treated as clinical guidance.
2 Presentation What lymphoedema can look and feel like.
MY EXPERIENCE
What it looks and feels like
Swelling of the right ankle, foot and lower leg. Loss of the normal ankle outline. Pitting, where a thumb leaves a visible indentation. Heaviness. Warmth. Pressure or throbbing. Shoe fit changing. Compression marks. Symptoms extending toward the knee. After severe flares, pins and needles or areas of altered sensation.
MY EXPERIENCE
What makes it worse
Long periods of sitting and travel can make management more difficult.
3 Recognition Early signs worth paying attention to.
MY EXPERIENCE
What happened
The earliest signs I currently place in 2023. I noticed swelling and changes in shoe fit at work. Initially I was able to hide or minimize it. The first major event that made it impossible to dismiss happened in January 2024, when my right shoe would no longer fit normally and the ankle had visibly changed shape.
4 Diagnosis How lymphoedema is typically diagnosed and ruled in or out.
MEDICAL RECORD
What happened
In January 2024 my GP examined the swelling and urgently referred me to hospital because thrombosis needed to be excluded. An ultrasound did not show thrombosis. The hospital assessment then pointed toward lymphoedema.
INTERPRETATION
What I know now
That distinction mattered enormously: I had gone in afraid of an acute clot and came out facing a chronic condition that would require ongoing management.
5 Measurements Tracking limb measurements over time and why it matters.
MY EXPERIENCE
What I track
Yes. I track measurements at the foot, ankle, calf, knee and thigh, together with photographs and symptoms.
INTERPRETATION
What is published here, and why
For the public website I publish trends rather than every raw number initially — for example, "ankle circumference increased during a flare," "shoe fit changed," "swelling became visibly asymmetric," "measurements improved or worsened following treatment or travel." A detailed measurement table could later live in an evidence/data section if there is a clear reason for publishing it.
6 Compression Compression garments: fitting, wearing, and living with them.
MY EXPERIENCE
What happened
Compression is a central part of management. I have used compression stockings and, particularly around travel or more significant swelling, compression wrapping/bandaging.
INTERPRETATION
What I wish someone had told me
It is effective management, but it is also labour: putting it on, getting the fit right, tolerating pressure, monitoring the skin and planning clothing and travel around it.
7 Movement Exercise and movement as part of management.
MY EXPERIENCE
What happened
Movement is important to me and forms part of how I manage the condition. Walking has been particularly important throughout my recovery history. I also monitor activity because there is a difference between helpful movement and simply forcing a swollen leg through another workday.
MEDICAL RECORD
A note on this section
Any exercise recommendations here are my experience rather than universal medical advice.
8 Treatment Manual lymphatic drainage and other conservative treatments.
MY EXPERIENCE
What my record includes
Compression. Manual lymphatic drainage / lymphatic treatment. Bandaging or wrapping. Movement. Elevation. Photographic tracking. Circumference tracking. Self-management around travel and prolonged sitting.
INTERPRETATION
What I know now
Treatment is management rather than a claim of cure.
9 Tests Imaging and diagnostic tests along the way.
MEDICAL RECORD
What happened
The most important acute test in the record is the January 2024 investigation to exclude thrombosis. An ultrasound did not show a blood clot.
INTERPRETATION
What's not yet published
Further specialist investigations should only be listed when the medical reports are confirmed and in hand.
10 Surgery Surgical options and what they involve.
MY EXPERIENCE
What happened
I have not had lymphoedema-related surgery. If surgical options are being considered or discussed at any point, that stays private until a specialist consultation and treatment plan are confirmed.
11 Preparation Preparing for specialist appointments and procedures.
MY EXPERIENCE
What happened
Travel requires more planning than it once did. I think about compression, sitting time, movement, swelling, shoe choice, the ability to elevate the leg and what happens after the flight.
INTERPRETATION
What I know now
A long journey does not end when the plane lands. My leg can continue responding after I arrive.
Another way inNog een ingang