⁇ Cancer light – Five days that felt strangely familiar

⁇ 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 days in a row

It's been five days since my last blog. There's a lot to say but very little actually happened. I'm still sick, still tired and still fluctuating in energy. The peaks are more Vaalserberg than Mount Everest and the valleys are fortunately less deep than the Mariana Trench. The daily rhythm sometimes feels like it's in slow motion while your head still wants to move forward.

“Rust is not a standstill, even if it feels like it sometimes.”

⁇ The schedule that keeps me afloat

The only thing that was really worth mentioning is that I finally made a feeding schedule. That was about time, because Sunday night I took a bottle of drinking food just before going to bed and I bounced half the night. 480 kilocalories on the edge of your bed is not a recipe for deep sleep. Now I have a schedule that works and I try to stick to it neatly.

To be honest, it does its job. In the past week I have gained two kilos again. I wanted to get back to my starting weight before this condition and I almost succeeded. For the first time in weeks, my body not only feels like something I have to maintain, but also like something that very carefully seeks the way up.

“Whoever wants to make it to the end of the day sometimes starts at the beginning.”

⁇ Walk with a border

We had to move more, according to the case manager, so Sylvia and I made a plan. Go to the shopping center, do some shopping, see some shops, past the pharmacy and then back again. The practice turned out to be less rosy. After the first store it was ready for me. I spent the rest of the adventure in the car while Sylvia completed the route. You only get to know boundaries by jokingly bumping into them.

“Sometimes the most ambitious plan is simply walking back to the car.”

⁇ Monday got a crack

And then came Monday night, which clumped everything that was physically and mentally heavy into an unsavory cocktail. The pain increased, the fatigue became dominant and somewhere I noticed that my resilience got a big dent. Not only my body protested, but also my head. It felt like I had to fight to stay positive and at the same time be careful not to slip away towards gloom. That constant pushing against heaviness in heels.

The doctors, meanwhile, cautiously started talking about Fentanyl patches. A remedy that I'd rather not use for a while. It is extremely potent, difficult to dismantle and is known to be highly addictive. I don't want to think about it until there is no other option. For now, I stick to a thousand milligrams of paracetamol every six hours, a kind of shaky but fair compromise between willpower and necessity.

“Sometimes positivity feels like a muscle that keeps training you against your better judgment.”

⁇ What you miss feels heavier

Tuesday was another tough day. The Nextcloud Enterprise Day in The Hague took place and it really hurt that I couldn't be there. So many people I wanted to talk to, so many plans I wanted to discuss. Fortunately, I had a live correspondent who kept me informed. Thank you, Jos, for the updates and the commitment. It made the distance a little smaller.

‘Being absent sometimes hurts more than being present.’

⁇ A house full of help and a head full of noise

My parents-in-law came to help in the house and garden. I wanted to participate, but after one late cleaning I was completely empty. Too many stimuli, too much exercise, too much everything. So I went upstairs and fell asleep. Sylvia also discovered leakage in our house, so the insurance may soon count on a cheerful email from me.
In the evening we ate at my sister-in-law's house. It was fun, but Sylvia saw that my face was getting paler around the eyes and redder around the nose. Everyone told me to report it if it got too much, but of course I didn't. Rody warned me I'd pay this back triple. He was right.

“Listening to others is sometimes easier than listening to yourself.”

⁇ For now

This morning I started quietly, a lot of pain, little energy. I still swept the driveway, which felt like an expedition. Jurjan came by unexpectedly. He's been through almost the same thing, but even more intensely. Because of him I realize every time that it could have been worse and that I still slip everywhere in between.
The decay has started and will probably continue until the end of December. After that, it's gonna get better. I sincerely believe that. I know what a wonderful woman I have and how much she does for me. My family carries me now that I can't always do it myself. And as I write this, the dog is lying on my feet, as if to say it's going to be okay.

‘Heaviness can have light and light sometimes weighs surprisingly much.’