⁇ Cancer light – The neck at maximum tension

⁇ 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 them – sometimes serious, sometimes humorous, but always real.

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

⁇ Inflation of an uncomfortable bump

The treatments do their job and you can feel it. Literally and without diplomacy. The swelling in my neck behaves like a bump that someone with a bicycle pump tries to inflate, while he is already anxiously at his maximum. With each pump movement a pain shoot follows with theatrical precision. Where the pain was still stuck at my jaw the day before yesterday, he has now gained ambition up to my ear and if I even move towards collarbone. Lying on my back is now an Olympic discipline. I drive over traffic barriers with my hand as a protective cap against my neck, as if I were transporting a fragile porcelain heirloom. This morning we hit the first two of the six weeks. There are four more in front of me, with twenty radiations waiting for their turn.

The inside of my mouth also joined the complaints choir. With my tongue I feel the damage and on the left the saliva seems to have permanently withdrawn from the public space. Sleep has become a scarce commodity and I notice that my thoughts sometimes wander to heavier pain relief, morphine and Fentanyl, as forbidden but seductive comfort. Everything within expectations, they say. That is reassuring, although it mainly sounds like a hallmark for inconvenience.

“Sometimes it feels like my body is following its own meeting agenda.”

⁇ Optimism with building kit

Yesterday Sylvia and I decided that fresh air and flatpack furniture would work therapeutically. The IKEA offered hope, fluorescent light and a pain impulse that relativized every Scandinavian simplicity. I had a pain attack at the restaurant. According to Sylvia, my complexion became a subtle shade of hospital beige, although I attribute that to the lighting that no one flatters. We continued our urban expedition along CoolBlue and the Mediamarkt, convinced that normality was feasible. At home, this normality turned out to be exhausting. Two people, a sofa and a collective sense of light minor.

‘Optimism sometimes comes in kit form, including missing screw.’

⁇ Rough eyebrows and taxi tango

My appearance currently balances somewhere between controlled and fearless. The length of my beard is neatly tracked, necessary for the mask that keeps me tightly in line during the radiation treatments. But although the length is controlled, the whole cheerfully grows in all directions, as if each hair has claimed its own creative freedom. My neck looks like a slightly wild nature reserve and my eyebrows have decided that subtlety is an overrated concept. Sylvia's embarrassed to death for me. Me too, though I try to sell it as a temporary avant-garde phase.

Then the taxis. I finally got permission to take the taxi to the irradiations, a small administrative victory that was immediately followed by two new headache files. The first is the book itself. For every ride I have to go through a labyrinth of input fields, followed by a double confirmation that feels like a philosophical test of my patience. Did you enter the data correctly? Yeah, yeah. Do you want to confirm the ride? No, of course not, I did all this purely for relaxation. Thirty to forty rides later I felt almost nauseous from the efficiency.

The second problem is more subtle, but at least as irritating. The authorisation of the health insurer does not allow me administratively to declare trips that are before the date of approval. In other words: The necessary trips to Amsterdam are simply not reimbursed. When I asked how I should have arranged that while I heard on Friday afternoon that I had to be in Amsterdam on Monday, it remained silent. Strange people. Fortunately, we drive electric, otherwise that six times 158 kilometers would also have resulted in a financial update.

“Bureaucracy is also a form of cardio.”

⁇ For now

For now this is where I stand. The swelling remains visible and growing, the nights are short and the humor is half-powered but still ready. Sylvia misses her education today, which weighs more than she wants to admit. I recognize the loss of control and sympathize with her. We have decided to temporarily spare the agenda: We leave existing appointments, but new plans remain in the waiting room for a while. The cake is up for a while. Tomorrow we'll see again.

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