⁇ Cancer light – The day that fries became a highlight

⁇ 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.”

⁇ About half

Day three of the radiation is over and that means we're halfway through the first week. I have made an overview in which I can tick off every session. A kind of minimalistic advent calendar, but without chocolate. To my surprise, I'm already at 10% of the total. The first two treatments cut into it. The fatigue felt less like little energy and more like an abruptly canceled software update.

Someone told me yesterday that I looked worse than a week ago. I'm sure that was well-intentioned, but my mirror had already told me the same thing. Later that afternoon I was sleeping on the couch. Sylvia looked at me and said that I was so pale that I almost had a body color. It was meant to be a joke, but it was exactly how it felt: It was as if my face was on pause while the rest of me still had to keep up.

“Progress sometimes feels smaller than it is, until you see how many ticks there are.”

⁇ Visit with a timer

Yesterday Patrick, Vera and her daughter Sophie came by. It was warm and cheerful and exactly what I needed, although I noticed after an hour that the cake was really up. My energy is so shaky that I sometimes feel like a smartphone that sticks stiff at 3 percent. Fortunately, Patrick has known me for years and he himself concluded that it was time to leave. A blessing for every cancer patient: Friends who feel when the noise gets too big.

“Some people stay just long enough to leave light behind.”

Patat as moral support

Today, the fatigue seemed to go away. In my throat I notice that everything is happening, which is not surprising given the nature of the treatment. But I wanted to do one thing absolutely: to the snack bar. I wanted to eat some fries before my throat couldn't handle it anymore. And hey, sweetheart, how it tasted. People who know me know that fries are high on my culinary rankings. Even above kale and at the same level as my mother's dot and rice ebb. It was the limit of what my throat could handle today, but a person has to set priorities.

“Sometimes happiness is a patty that arrives just in time.”

⁇ Counting and losing weight

Despite my supplements and sweets, I still fall off. On October 24th I weighed 86.6 kilos and now I tap the 83. I can have it, I say tough, but it still feels strange that your body decreases while you are building yourself. I also started with fluorohappen, every two irradiations. My salivary glands get a big blow and saliva protects the teeth against everything that is acidic, sticky or badly timed. As a result, my oral hygiene is now more important than ever. Brushing, rinsing and controlling are suddenly no longer routine actions but strategy, as if my mouth is a small company of which I am full-time director.

And all this is not a temporary side issue. Because my salivary glands are permanently damaged, I will have to fluorohap weekly for the rest of my life. For the duration of treatment, this happens even every two days. I buy the material at the pharmacy and it is not reimbursed by the health insurance, something I call mildly irritating to use neat words.

In the hospital they also made caps that fit exactly on my teeth. First a 3D scan of my teeth was made with a state-of-the-art camera, after which a printer performed his own futuristic ballet and delivered the result. I fill those caps with fluoride and that whole ritual now feels like a technical evening course Oral Maintenance for Advanced.

In addition, I pay close attention to signs of mucositis, which is charming inflammation that can turn the mouth into an internal battlefield. I haven't found any blisters yet. Every night I inspect my mouth with the accuracy of an archaeologist who does not want to damage a vulnerable find. So far, the area remains remarkably quiet.

“You learn a lot about yourself when even your choices are on a logistical schedule.”

⁇ A meeting in the hall

Yesterday I ran into a former colleague of Sylvia in the hospital. She just finished her last irradiation, nine months(!). You can't compare my trajectory and hers, but our way of dealing with illness turned out to be remarkably similar. We both felt that the environment was heavier than we were. She strongly recommended calling the health insurance company for taxi transport. It would greatly relieve the home front. So I'm just taking care of that now.

“Sometimes support comes from unexpected angles and right on time.”

⁇ For now

For now, this is where I am. Three days on the road, a whole series to go, but today felt a little lighter than yesterday. Maybe thanks to the patatje, maybe thanks to the conversations, maybe thanks to the simple fact that the counter keeps tapping. I keep making my lists, keeping an eye on my throat and gently watering my humor.

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