⁇ Cancer light – When water regained its taste

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.”

⁇ The room without night

The last few days have been like a night without borders. I was lying, but I wasn't sleeping. The pain in my throat grew into a kind of siren that commanded my whole body. Even morphine seemed like a kind of placebo with good intentions but little decisiveness. My world became small and sharp: Thirty minutes each time, then wake up. No dreams, no rest, just waiting for something to change or until I myself become a little less.

‘Pain liquefies time, but never friendly.’

⁇ The conversation that was needed

Sylvia and I videotaped. Her face in my screen felt close, but my attention was thin as rolling paper. I saw a future in which I might not be able to speak clearly to her anymore. That prospect was more painful than the throat itself. Sylvia sent a message that I should have read to the nurse. I did it. And if you've ever wondered if words can weigh: Yes, yes. Her words were taken seriously. There was a head-and-neck surgeon. There was attention. There was recognition that it was worse than thought.

“Sometimes someone else has to say on your behalf that enough is enough.”

⁇ The probe that did not fit

The probe would help, they said. It was a logical solution: If food fails, we bring it in along a different route. But the thing touched the wound and every contact felt like fire in fine reproduction work. Three times I panicked. Not a little turmoil, but a real panic. The kind of panic in which talking no longer works and your body only tries to organise ‘away’. Tomorrow we try again. With other equipment. And hopefully something that tells me that the world is not on fire.

“Solutions are not always immediate solutions.”

⁇ When water got taste again

And then came the infusion. I almost didn't expect it. But fighting is a sacred thing. My body got something back that it was losing. Suddenly I could sleep. Not long, but longer than half an episode of anything. I even dreamed. The room got color. Not much, but enough to see the edges again. Today I washed myself and walked a bit. For the first time in days, my body felt not only like a battlefield, but also like a home.

“Small improvements can carry an unreasonable amount of hope.”

⁇ For now

For now, this is where I stand, a new attempt tomorrow. Maybe probe, maybe food. Maybe pain, maybe light. But today I dreamed again. And that's something.

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