⁇ Cancer light – pushing boundaries with a Renault Trafic

⁇ 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 serious, sometimes humorous, but always real.

“Life does not call in advance to ask if it is convenient.”

⁇ Complete together again

Sylvia and Mandy are back. That sentence alone feels like a profit. Together with Steijn and Jurjan we drove in the Renault Trafic towards Schiphol. Jurjan turned out to be an unexpected bonus along the way. He knows how cancer feels, how masks smell, what radiation does and what AOV insurance does not do. The conversation was lighthearted and educational at the same time, which is a rare but pleasant combination. On the way back I slept almost the entire ride. In retrospect, I had greatly underestimated the impact of the trip. Apparently, you can mentally think that you're back, while your body is still on its way somewhere. It was good that someone else was holding the wheel, literally and figuratively.

“Sometimes companionship is not necessary to stay awake, but to be allowed to sleep.”

⁇ Routine as a guide

In the weeks that Sylvia and Mandy were away, I stuck tightly to a fixed morning routine. Kitchen in. Hot milk in the microwave. Was on. Unpack the dishwasher. Walking the dog. Then a large bowl of Brinta and a cup of latte macchiato. Both largely tasteless, but the routine was pleasant. It gave structure to days that could otherwise fall in all directions. It was not a culinary experience, but a mental handrail. Now that the two women in my family are back, I'm trying to pick up that routine again. That turns out to be more difficult than I thought. Rhythm tolerates bad competition, even if that competition is loving and welcome.

‘Rhythm is not a luxury, but a silent form of self-care.’

⁇ Baby soft and rock hard

I had hope. Seriously. I felt stubble and thought my beard was coming back. That turned out to be wishful thinking of the purest kind. Large parts of my face and neck are now baby soft and baby bald. That sounds endearing, but felt painfully confronting. At the same time, I was busy that week. Every day no later than 10 a.m. Household. Move. Continue. I even lost weight every day, despite the fact that my stomach and intestines were finally calmer. Physical recovery is not a straight line. In the meantime, my throat feels as if too much has been removed and as if there is continuously a thick patch of fabric in it. Swallow is a project. Cookies, potatoes, candy, everything sticks. Taking it two or three times is no exception. Recovery, yes. Comfort, not yet. And then there's the itch. In the places where burns were previously, it comes back with great regularity. Not painful, but persistent. It is still often lubricated to keep it within limits. I take itching gratefully above pain these days, but it remains a daily reminder that recovery is also discomfort. Recovery, yes. Comfort, not yet.

“Your body does not lie, but it tells its truth without subtitles.”

⁇ From the front to the middle

Mentally I notice that it is getting more and more difficult. Not because it goes wrong, but because my battery only charges slowly and has no spare. Everything I do takes energy right away. There is no buffer anymore. I notice this mainly in human contact outside my own family. Conversations with others are pleasant, sincere and often even fun, but they cost more than they yield. I enjoy it while I'm emptying. That's a strange sensation.

I say it more and more out loud: I'm fit enough to be bored, but too lifeless to do anything about it. That sentence is no longer a joke, but an observation. At the same time, not everything is heavy anymore. A visit to the supermarket is no longer hell. Yesterday I even sat with Sylvia on a terrace. It almost felt normal. Almost, because also there my battery ran out slowly, but this time without panic.

On top of that comes uncertainty. There's still a lump of meat in my throat that doesn't seem to shrink. The irradiation was successful. It's all gone. I need to be treated even further. Answers won't come until March. Waiting eats energy I don't have. And precisely because I am someone who is normally full of ideas, plans and movement, this mental standstill feels heavier than the physical limitations.

What also wrings is the feeling that I have lost my place somewhere. Before my illness, I was at the forefront when it came to digital sovereignty. Not screaming, but visible, involved, substantively sharp. Now I'm in between. In the masses. It feels like a loss. I want that place back in the front. Not out of ego, but because I believe that Europeans should be helped here. That will be my first point of attention. My return to professional life. Not faster, but more conscious.

“Recovery sometimes means learning to choose when something costs.”

⁇ For now

The first week that our family was complete again, turned out to be harder than expected. Sylvia came back sick and her bad nights became mine too. Many of the tasks I had taken over during their absence turned out to be... creatively executed afterwards. The crane was crooked. Glued frame parts did not hang straight. Kitchen and bathroom got a second round of cleaning. The only thing that really went well was a glued plinth of ten centimeters. It felt symbolic. I overestimated myself and collapsed a little. That really hit me mentally, and that affected my self-confidence.

Last Monday I brought Mandy to school in Zwolle. Because this time I was fitter than Sylvia, I drove myself. It felt heavier than a trip to The Hague, even though the car drove most of the time. I did the return ride, too. Because if you don't know your boundary, you can't move it. I was demolished. So I went again yesterday. Zwolle, then Staphorst for coffee with my parents. I had to lie there on the couch for half an hour before I could go back. Zwolle went well. Hengelo as well. But at home I fled the dining table. Too busy. Too tired. Which was really cool: My daughter had wrapped my spare laptop. Maybe she's doing my main laptop now, too. For now, this is where I stand, getting to know borders. Sometimes shifting. Accept it sometimes.

‘Heaviness may have light. And light sometimes weighs surprisingly much.”

PS: Brinta is completely european, I'll tell you....