15:33 The bell that no one wants to hear
It was a call on Friday afternoon at 15:33. I was just preparing a kwis beer tasting. In a few minutes my afternoon changed from light to heavy. Since then, I've been trying to write down everything that happens. Not to get pity, but to keep my head and heart together. These blogs are my way of understanding, sharing and showing how I deal with this, sometimes seriously, sometimes with humor, but always really.
“Life does not call in advance to ask if it is convenient.”
⁇ The 20-minute limit
For the first time in a while, I almost felt like myself again. I had energy, talkative spirit and even a desire to do something useful. So when MEPAL called for a call, I thought: Why not? A little work, a touch of normality, that could only be good. The first few minutes I felt sharp, alert, almost triumphant. But somewhere around minute 20 something happened. My voice got hoarse, my throat started burning and it seemed like my brain was going into slow motion. Like someone pulled the plug.
Afterwards I sat on the couch with a blanket around me, cold and exhausted. Sylvia had warned me that I was going too fast, the interlocutor too, and I had laughed kindly, as people do when they know the other person is right but try anyway. The rest of the day was silence. Silence with tea, pain shoots and the realization that recovery is not a straight line but a winding path that does not care about my planning.
“Recovery is not a straight line, rather a winding path with a will of its own.”
⁇ The four-kilometre journey
This morning I took Mandy to her internship.
I slept more than 8 hours continuously that night. Four kilometers, a small ride that nowadays feels like a mini expedition with Everest allures. Mandy sat quietly next to me. She knew for a long time that it was difficult for me, but she didn't say anything about it. We listened to the news, I pretended to drive effortlessly, and meanwhile focused on every breath. Sylvia was still in bed.
I promised I'd drive quietly, and I did. No rush, no heroism, just being on the road together. When I got home I felt like I had cycled to the hardware store five times. My heart pounded, my muscles protested, but somewhere under that fatigue there was also pride. Proud that I had done it, that Mandy kept her mouth shut out of love, and that Sylvia could sleep quietly for a while.
‘Sometimes love is just taking someone away and then collapsing.’
⁇ Lunch in the expensive canteen
We drove later in the morning to the hospital in Enschede for what I thought would be the first real consultation about the radiation. There was an "agreement" on the agenda, so that sounded serious. But the reality turned out to be different. It was a tooth photo, to check if there was anything in my teeth that could get in the way of the radiation. Fortunately not, although there are two minor inflammations. They can wait until after irradiation.
That was the good news. The bad news came afterwards: Radiation in the mouth is not bad. Dryer mouth, more cavities, pain, and teeth that wear out faster. The nurse said it kindly, as if she was passing on the weather forecast, but the message stuck. I tried to be light-hearted and said that I finally had an excuse to eat more ice cream. She laughed politely.
We would have to wait another hour to "have caps made" for the treatment. We decided to stay. In the canteen we ordered lunch that was so expensive that I wondered if there were gold flakes on the sandwich. When we finally wanted to walk back, the appointment turned out to be a mistake. No caps today. Not until Thursday. Lunch was literally and figuratively the highlight of the day.
‘Sometimes a cheese sandwich costs more than your patience.’
⁇ The official word
Later in the afternoon, Antoni van Leeuwenhoek called. The doctor sounded friendly but businesslike, as if he came to confirm a piece of the puzzle that we actually already knew. The result was clear: It is indeed cancer. Not a surprise, but a stamp. The doctor was surprised that the radiation had not yet started in Enschede. He recommended starting as soon as possible. Sylvia was immediately back on the line, determined to speed up. She got polite words back: “Sir has our full attention.” That sounds good, but it also sounds like waiting.
And waiting turns out to be a tiring activity. You can do nothing for it, nothing against it, just hope that the next step is finally taken. We don't know when the radiation will start, just that it won't be Thursday. And not before.
“Confirmation does not make anything better, only however.”
⁇ For now
For now, this is where I stand. The days bring news in small doses, like drops from an infusion that runs just a little too slowly. I try to find the balance between doing and resting, between trust and distrust, between joking and just being quiet. Humor helps, so does coffee.
‘Heaviness may have light. And light sometimes weighs surprisingly much.”
English (UK)