A Cancer Journey

Proton Therapy at UMCG Groningen

August – October 2024

Ken Copeland · Wijnjewoude, Friesland

★ Good News ★

24 December 2024: Nothing to see — another look in April ☺

Written for family and friends

A Note Before We Begin

Some of this has been sent in emails, but I was not sure who had what. So I taught myself how to use Google Docs and started there. I am also keeping up with This Week in Wijnjewoude — but not including any of this — so the weekly blog might seem a little disjointed for a while.

Funny. TWIW was meant to be for my kids as an alternative to Facebook, if they ever wanted to know a bit more about me sometime in the future. This document is something different: a record of the process, written in real time, as much for myself as for anyone else.

I think it is helping me — at this stage I can be an observer as well as a participant.

I am also keeping a separate index of useful information about proton therapy, the UMCG centre, and practical matters like talking to friends and family about a cancer diagnosis. Those sections are gathered at the back of this document for easy reference.

A Note for the end of the Treatment

Monday 16th March, 2026

I mentioned in the text that there were some other things found in the course of obtaining my Roadworthy Certificate.

Namely, the full chest and neck scans revealed 3 anomalies in my lungs - suspected cancer spots. One was large enough to be removed surgically - the other two were very small and I actually had to wait until they grew enough to be the subject of photon radiation - ie. the other sort.

One was treated successfully a few months ago. The results of the 2nd treatment were made known to us on Monday 16 March, 2026…relieved to say ALL GOOD!

So, now the reset to get on with things as an "active 75 year old".

(The rest is the old stuff - rewritten by Claude - well, re-organised using my writings)

Part One: The Journey

What follows is the account I wrote in real time, week by week, as the treatment progressed. It begins in August 2024, when things became very real.

Tuesday, 13 August 2024

Preparations: Masks, Moulds and Oral Hygiene

Yesterday I went to the hospital again — for an oral hygiene check-up. All the years of good dentist visits have certainly helped.

It seems that teeth can be badly affected by the treatment, which is why I had to have a wisdom tooth removed (too close to the radiation zone). The dentist then took plaster casts of top and bottom in order to make a rubber mould. Every evening after the treatment, I have to put fluoride gel in the mould and wear it for five minutes or more.

Tomorrow and Thursday I have to go again for talks and explanations. They are also going to make a mould or mask of my head, neck and shoulders — they can then mark this with the exact location of where the radiation has to be.

This they did — so very clever. It is a sort of rigid plastic mesh. They have it in an oven so that it is pliable. The technician put it on my face and chest and then called her assistants to push it into place — a mould over my head and shoulders.

I am also getting a dietician to help with some of the side effects — dry mouth, swallowing, and so on.

All still pretty scary, but remaining upbeat and looking forward to moving into the (new) house.

Today, I had to cancel my yearly visit to my cardiologist — a bit like 'we haven't had any sharks since the crocodiles took over'. :)

Love to you all. xxxx

Friday, 30 August 2024

Treatment Begins: Killing Me with Kindness

I had my 2nd radiation treatment yesterday.

So far, nothing in the way of side-effects. Not that I expected any this early.

After the first treatment, my first words to Janny were: "Gee, they're killing me with kindness." Everyone is just so caring and efficient.

It's still a bit scary as it is very real now. I walk down a corridor to Proton Machine 1 or 2 — they give me a bathrobe and tell me which number. I only have to take off my shirt, but it seems to be protocol to wear the bathrobe. I have my own bathroom that I can lock, then put the key in the pocket of the bathrobe.

Then I make my way to the right machine by following the numbers on the floor.

I then have to climb on to a table — it has a raised knee block for comfort. They announce every step of what's happening:

"We are going to put the mask on."

"Is it comfortable?" (Thumbs up, as I can't talk with the mask on — it's very tight.)

"Wiggle your shoulders to the left" — it feels like only a millimetre as they line up the laser lights.

"Now a couple of photos" — they check by overlaying the new photo over the old to make sure it is lined up correctly.

"We're leaving the room — raise your leg if anything is not right." A bell rings to clear the room.

"The scan is beginning" — I remain perfectly still, my hands gripping handles placed in my position to keep my shoulders still.

"OK, that's it" — after 10 to 20 minutes. Time goes fairly quickly, but I'm not yet sure exactly how long.

They take the mask off and place it in its cardboard carrying box.

Yesterday, I had to go straight away for another CT scan — putting the mask back on. They will be doing this every Thursday to check if anything is happening to the tumour.

Back to my bathroom, dress and return the bathrobe — it goes in a plastic crate with my name on it, for next time. I looked at the cupboard where they keep the dressing gown crates; there seemed to be room for about 24. I was trying to guess how many they do in a day. Mine must stay there all the time as it is five days a week — but I still can't work out the total number of patients.

The mask also has its own box — and they ask my birthdate each time, just to make sure they have the right person (and the right computer program for the machine).

Today we have arranged a taxi — just to make sure that works out OK. I'll be going mostly on my own from now on, but it is OK if Janny comes too when it works out timewise. Ben is going to come when he can.

After every radiation session, I can go to the Oral Hygiene room — they will be expecting me but it is OK to miss it if it doesn't work out. "If the door is open, just walk in."

They are obviously expecting side-effects — but I did ask, and it is not always the case. They do it as a preventative measure. I also have to rinse 8–10 times a day with a salt/baking soda solution.

A thought from the fire service days…

When I was in Fire Protection, I got deeply into high-rise building fire systems. An odd story always stuck with me: a high-rise fire investigation revealed that a janitor had discovered the fire but did nothing, because it was outside his routine and he didn’t know what else to do. The point is that I find myself totally determined to go about my daily routine for as long as I can — even next week means I can do my full day’s work and have the treatment in the evenings. That should lessen the burden on Janny as well.

Janny is my strength, but we have to watch that it doesn't take too much out of her.

Ankie is helping enormously with our work. Janny's brothers and sisters sent me flowers on the day of the first treatment. And Janny's Mum is praying for me — she said so.

We told the clients this week. One of them actually cried, but we settled it down with positive thoughts. Ankie wrote a letter for them to take home — to explain the situation for family or carers, just in case they take some concerns home with them.

So, I hope you don't mind this — it somehow seems to help me to think it through with loved ones in mind. xx

Wednesday, 18 September 2024

Session 15 of 35: Routine and Side-Effects

I've had 15 of the 35 radiation treatments.

The taxi really is the easiest way to go — much less stress. I've only had to go on my own once so far. Ben will be there twice this week and can catch the train from Groningen back to Amsterdam. He has to be in Den Haag on Thursday.

I really have the routine down pat now — dressing gown, Machine 1 or 2, get picked up, get asked for my date of birth, hop on the table, and in no time at all I'm heading out again. Sometimes an extra talk with the doctor or a session with the oral hygiene nurse.

Noticing some side effects now — mainly not being able to swallow easily, extra fatigue, and a bit of skin irritation around the neck. All manageable so far, but the doctor did prescribe some morphine to take 30 minutes before eating, just to keep up food intake. They said at the start that not losing weight was important. Morphine sounds a bit drastic, but it is a small dose and I am not in a hurry to use it if I can avoid it.

Saturday, 21 September 2024

Session 18 of 35: Over Halfway

A little milestone: I've had 18 of the 35 radiation sessions — over halfway.

The taxi trips are easier. The (young) blonde assistant at reception is always so bright and cheerful — no need to say my name. She just says "Hello, I'll call you when we're ready" with a big smile. She is also Janny's favourite — must be the bright and bubbly personality.

I have a constant sore throat and am losing my voice, but at least I am able to do things — even though my helper Tjeerd is on a three-week holiday. Probably a good thing, as I don't have to do quite so much, and I can plan a few jobs to do before the real winter arrives.

Janny had to tell the weekend kids today. They wondered why my voice sounded so funny. She also had to tell all the parents, just in case the kids take some concerns home with them.

Next week I have an appointment at 0700 hours. They warned us that we will probably see children in the mornings — so be prepared.

Last week, we saw that a partner was allowed to go to the changing room and then on to look at the machine itself — so we are going to ask for Janny to come during this week.

Some of the other people in the waiting area look surprisingly young — and some look far worse off than me. There is no real conversation as such, just a nod and the equivalent of "g'day". Sometimes a "good luck" as we pass in the changing room area.

Still no feedback one way or the other. I can only hope that the changes in my throat are for the better as a result of the radiation.

Saturday, 28 September 2024

The Last Week of Treatment

Tuesday:

We missed Monday because the machine needed some maintenance.

• Talk with the doctor. I asked: "Is there anything to see yet?" "Well, the CT scans don't reveal much because it is at the back of the tongue. We will need MRI and/or PET scans to see fully, but we don't want to do them while the radiation therapy is ongoing." So, I have to wait.

• Janny was able to have a close-up look at the machine — bigger than she thought.

• Oral Hygiene Nurse check-up and salt spray — it really helps.

Wednesday:

Early start — to no avail. The machine needed an unexpected update that took about an hour. The waiting room began to fill up, including a few children. I had to let the taxi go and arranged a later one. Strangely, the hospital feels like a comfortable place to wait — not the dread that one might expect.

Thursday:

I had to fill out a questionnaire — about the lead-up, the decision-making process, the doctor/patient relationship, whether I have enough care and support, whether I am able to still do things on my own, and quality of life. Luckily, I am still able to tick off "uitstekend" (excellent) to just about all of it.

Friday:

I had a visit from a member of a committee that Janny is on — "Eer den Doden" (Honour the Dead), a local group that organises funerals and remembrances. I was able to joke that I hoped he was not here to measure me up (to Janny, not to him). He was there simply to offer support — "sterkte" (strength).

I also told the radiation team that I hoped they didn't have a microphone — I think I was actually snoring on the table. :-)

And our favourite receptionist is leaving. She has to spend more time studying. At least I told her that she was the highlight of my days visiting the centre — she and her workmates liked that, I think.

I reflected in the taxi on the way home that these lighter moments are important right now.

Saturday:

We drove ourselves so that we could visit IKEA for some dried flowers. When I walked into the radiation chamber I said "Good morning — again new faces!" They laughed and said yes, there are 30 of us. I had been wondering. Only three are males as far as I can remember.

Saturday, 12 October 2024

Two to Go

We only have two more sessions to go — Monday and Tuesday of next week.

Janny and/or Ben have come with me every day but two — so it is very much 'we'.

I then have six weeks of recovery time — we think this is standard, as is the number of radiation sessions (35). I asked the doctor: "What if it takes 36, for example?" Well, studies have shown that 35 is the recommended number. So that's it at the moment. The questionnaire/study that I am involved in is aimed at determining whether or not they can tailor the treatment to individual needs.

After the six weeks, they will do all the testing required to see if it was successful or not. I just have to wait — and try to remain positive and active.

The Groningen Proton Therapy Centre is the only one of the three in the Netherlands that treats children. They have a special house on the grounds where the children can stay, instead of travelling every day. The whole hospital is like a giant suburb with a mixture of old and new buildings.

Thursday, 17 October 2024

The Last Day: An Emotional Farewell

All done and dusted, as far as the radiation goes. Now to wait until they can check the results. In the meantime, a couple of other things that they found whilst doing the roadworthy certificate have to be attended to.

Tuesday was the last day. I was totally overwhelmed when I walked into the chamber.

The room had been decorated — for me. "What's this for?" I asked. "For you," came the reply, "because it's your last day of treatment."

Yes, I ended up in tears at the receptionist counter — more at the thought of their kindness and professionalism. I told them about my early thought of "they're killing me with kindness" — and so it was, until the very end.

I had a thank-you card and a small pot of hearts, which I handed over, and then got out before I totally broke down.

♥♥♥

Part Two: Reference & Background

The following sections contain information that was useful to us during the treatment — on proton therapy, on the centre in Groningen, on Maggie's support centre, and some practical notes on talking to friends and family. They are gathered here for easy reference.

Proton Therapy vs Photon Therapy

Both photon therapy and proton therapy are types of radiation therapy used to treat cancer. They share the goal of delivering radiation to a tumour to destroy cancer cells, but they differ in how they achieve this.

Photon Therapy (conventional X-ray radiation)

• Uses high-energy X-rays (photons).

• Photons travel through the body, depositing energy along their entire path — including in healthy tissue beyond the tumour.

• Widely available and generally less expensive.

• Can cause more damage to healthy tissues surrounding the tumour.

Proton Therapy

• Uses protons — positively charged particles.

• Protons can be precisely controlled to deliver most of their energy directly to the tumour, at a predetermined depth, and then stop. This is called the Bragg Peak.

• Minimises damage to nearby healthy tissues.

• Potentially reduces side effects such as fatigue, nausea and hair loss.

• Less widely available and generally more expensive.

• Particularly valuable for tumours in the head and neck region, and for children, as healthy cells repair themselves better after proton radiation than after photon radiation.

The selection team opted for proton therapy in this case because the tumour was in the head/neck region, where precision matters most and where the proximity of sensitive structures — including teeth, saliva glands and the spinal cord — makes minimising scatter radiation especially important.

UMCG Protonentherapiecentrum, Groningen

From January 2018, the University Medical Centre Groningen (UMCG) has been operating the first Proton Therapy Centre in the Netherlands. The building, with metres-thick concrete walls, floors and ceiling, was completed in 2017. The UMCG needed a year to test the advanced equipment, including the 220-tonne particle accelerator.

The centre is part of the UMC Groningen Cancer Center, where oncology patients are offered all available treatments in one place, for both children and adults. It is the only one of the three centres in the Netherlands to offer treatment to children — around 60 to 70 per year (probably more now, as that figure dates from 2018).

The other two proton therapy centres in the Netherlands are in Delft and Maastricht.

The estimated cost to build the Groningen facility was €62 million. In 2020, the total cost of a head and neck proton therapy course at Amsterdam UMC was approximately €90,000.

Maggie's Groningen

Janny and I had some time one Friday to go and have a look at Maggie's. It was a warm, welcoming experience just walking inside — with people on hand to talk with, or simply to show us around.

Maggie's Groningen is situated in a park along a watercourse, near the north side of the University Medical Centre in Groningen. The centre was designed by Marlies Rohmer Architects & Urbanists, with landscaping by internationally renowned landscape architect Piet Oudolf. It opened in April 2024.

Who was Maggie?

Maggie was a writer, gardener and designer. When she was 47, she was diagnosed with breast cancer, and five years later she was told it had returned. After hearing this news in a windowless hospital corridor, she and her husband Charles Jencks resolved to create something better — a place for people with cancer that was outside of, but near, the hospital.

The first Maggie's opened in Edinburgh in 1996. There are now centres across the UK and abroad.

"Above all, what matters is not to lose the joy of living in the fear of dying."

What Maggie's Offers

When you are diagnosed with cancer, it can be overwhelming — not only for you, but also for your loved ones. At Maggie's, support is free and no appointment is necessary. You can come in simply to sit, or to talk, or to find comfort in the experiences of others.

Maggie believed that with encouragement to become actively involved in treatment, and with the right information and support, people could change the way they live with cancer — for the better.

A Poem — Just for Me

Written by an old workmate, Col Harris, on 18 September 2024.

The Big “C” — Thinking of You, Ken

by Col Harris

We will deal with it in our own mindful way(s)

We’ll hear advice from others, maybe even our brothers

We’ll hear it from our doctor

We’ll hear it from our wife

Sometimes through the journey

We may think we could be in strife

Will there be pain?

Can we bear that pain?

Will there be relief from the said pain?

Should I have a bottle of 15 Y.O. whiskey on hand?

To have a sip while I’m boating or when on dry land

Or could it be a Dutch Gin, with just a trickle of tonic?

To keep me happy and not think about the what-ifs

Ken, my friend, you’ll be with Janny along this journey

She will keep you focused, busy and not to over-worry

Your solid partner is there to keep you busy

Not thinking bad thoughts, just positively engaged

There’s things still to do around the house

Winter’s coming and firewood to chop

The kids may still come for learnings and some respite

So, Ken, your job is to keep well and keep up the fight

You can beat this horrible, insidious little “C”

And in the end, mate, what will be, will be!

GO KEN & JANNY — AND GO PIES, NEXT YEAR!

Tips for Having Easier Conversations

Telling people about a cancer diagnosis can be tiring and difficult. The following tips can help.

Tell them in the way that feels best for you

Talking face to face can be difficult, especially if the other person lives far away. You may find it easier to give the news over the phone, in a letter, or by text or email.

Introduce the subject gradually

If you are not sure how to start, you could say something like: "This is going to be difficult, but I need to tell you something" or "You know I have been feeling unwell for a while. I have had some tests and they have found out what's wrong."

Think about what is most important to you

You may feel as though there are a lot of things to think about. But if you focus, you might find that there are only two or three things you really want to talk about. Try to tell the person the main things you are worried about.

Give the information slowly

Say a few sentences and check if the other person understands before you carry on. Asking the other person if they understand may help you feel listened to.

Tell them how you feel

It is important they know if you are worried, so they can support you. Do not feel you have to sound positive and cheerful if you are not.

Do not worry about silences

Sometimes neither of you will know what to say. Holding hands, hugging, or just sitting quietly together for a while may help.

Be open

It is better for family and friends to know the facts from the start. If they find out later, they may feel hurt and upset that they were not able to support you.

Accept and ask for help

Family or friends will often offer support. If you cannot think of anything at that time, thank them and tell them you may ask later. If they do not offer and you would like some, ask them for it.

It is okay not to talk about cancer

Just chatting about everyday things can also help you feel that normal life still goes on.

20 months on — and counting.

Thank you to everyone who walked this with us.

Ken & Janny

The Cancer Journey 2024 - 2026