⁇ Cancer Light – The Day Everything Gets Tired

⁇ 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 fatigue that does not listen

The last few days have been strange. Eating and drinking go better, but my fitness seems to be disappearing. My head feels dull, my concentration flimsy. Sometimes it seems like I can't trust my own battery anymore. Maybe it is fear that quietly eats energy, as if my body is already preparing for what is to come. In a few days, the radiation will start, thirty in total, one every working day. Thirty days that I fear and want to count down at the same time. The doctors warned that my throat will become sore and that eating or drinking may not work anymore. That thought alone makes me tired.

“Some journeys are not measured in kilometres, but in courage per day.”

⁇ The garden as therapy

This morning my brother-in-law Rody came to help prepare the garden for winter. Sylvia and I had a bad night, so my contribution mainly consisted of looking, pointing out and encouraging. Still, it felt good to be there. The smell of wet earth, the sound of a rake, the simple feeling of finishing something together. Rody wisely kept his distance. He had a sore throat and didn't want to light me. That gesture touched me more than I expected. My resistance has been low since surgery, and I'm vulnerable. It is a strange sensation that someone keeps a distance from care, while you crave closeness.

“Sometimes love is just keeping your distance.”

⁇ Needles and nervous toes

Today I had to get blood again. Again that little ritual of waiting, calling, sleeve-up and pretending it's nothing. But my body doesn't fall for it. As soon as I see the puncture point, my breathing accelerates. My toes start to wobble, my head shoots in overdrive. I hardly feel anything, but my brain makes it a complete thriller. The sister kindly says: ‘Just relax.’ And I laugh a little sheepishly, as if I could just do that. Every time I pretend to do it calmer the next time, but honestly, it just doesn't get used to it.

“The mind is often more frightened than the skin.”

Being sick is expensive

Being sick in the Netherlands is not a hobby for those who like to save. Sylvia and I are picking up on our savings. Expensive protein shakes are purchased, bottles of fluoride at 27.50 euros per 100 milliliters, and food supplements that cost more than champagne. Anything to limit the damage of the irradiation. In the meantime, I am waiting for a response from my disability insurer. I have paid them about eighteen thousand euros over the years, but now I have to wait for them to call me. The irony is hard to deny. I hope for an advance, so that we do not get into the situation that choices have to be made between family, food and invoices.

“Care is free until you get sick.”

⁇ Digital autonomy and missed steps

In addition to everything that has to do with my treatment, there is something else that concerns me. I've been working on digital sovereignty for over a year: becoming independent of Big Tech, step by step, for myself and for organizations that want to. I also write about that. https://www.data-pro.nu/tag/weg-van-big-tech/. Somewhere in that process I got involved in the initiative Digital autonomy, a group of people working on fair, safe and human-centric technology. It's something I would normally dive into: writing, building, thinking along. But now I'm watching from a distance. Others make progress, organize meetings, develop plans. What about me? I refresh Signal and Discord messages and try to follow what happens. Sometimes it feels like I helped push the train, but didn't see him leave.

“Sometimes the biggest contribution is to do nothing.”

⁇ For now

For now, this is where I stand, between energy and exhaustion, between planning and letting go. Today felt heavier than yesterday, but tomorrow could just be better. I try to stay gentle, for my body and my head. The garden is ready for winter, the blood has been taken again, the forms have been filled in. And that's enough for now. Tomorrow I'll look further, hopefully with a bit more sharpness and less worry.

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