⁇ Cancer light – Between top feeling and 98 years

⁇ 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.”

⁇ Mechanically restored

The days go by. I feel fitter, I guess. But honestly, I don't know if I'm fitter or just better at selling that idea. I often say that I am fit enough to be bored but too lifeless to do anything about it. And more and more often I have to admit that that sentence is awfully accurate.

Mechanically everything seems fine. The bump in my neck is still shrinking and is now hard to find. My skin recovers, although there are places where it feels like I'm a newborn. New skin, no hair to be seen, a shaver that jams as if it is driving against a wall. At the bottom of my neck is a place that requires ointment several times a day and that also shows emphatically. My throat feels weird but not painful. The lack of saliva is more practical in nature. After three bites of a dry cake I can't get anything swallowed without water.

And then there's my taste. It has become a strange phenomenon. I can thoroughly enjoy everything Sylvia puts on the table. I can taste the difference between young and old cheese, but don't ask me what that cheese tastes like. I can't explain that. I had two whiskeys the other day. The burning of the alcohol was obvious. One was smokier than the other. But the moisture itself tasted like thick cool water. Does that sound crazy? That's what it is. I can't tell the difference between Gouda and nettle cheese. A beer is like spa red, although I can tell it's beer. IPA and Bock are fine. I like to drink coffee, but every bowl is a flaccid one, no matter who puts it or how carefully put it.

My voice is almost normal. My weight is stable. My skin is healing. I can spend hours concentrated behind my computers. And if the fatigue overtakes me, I recover faster than before. It's actually better than predicted. That's profit. But recovery turns out to be more than a checklist of features that return.

“Objective recovery is measurable, subjective recovery is only felt when you stumble.”

⁇ The campsite as a reality check

A few weeks ago I felt so good that I was thinking about work again. All day behind my laptop, physically strong, mentally resilient. In short, not sick.
There was an association day at the campsite. Such a day where everyone is present, drinks coffee, chats and then works. My plan was clear: help, in between to the hairdresser, back to work. It's fun. Productive. It's normal.
Until Sylvia spoke to me harshly when the first coffee was over. I had to sit down. She saw in me what I didn't want to acknowledge myself. I was tired. Not a little, but fundamentally. She was right. I collapsed and sat down until it was time to go to the hairdresser.
The drive to the hairdresser was unwise afterwards. I drove like a drunk, while my only fuel was coffee and breakfast. At the hairdresser I first sat down with a cup of coffee, then chatted with Ninorta while she cut me. When I finished, I had no energy to drive back to the campsite. Fortunately, Sylvia had already arranged for her to be taken home. She saw what I didn't see. Or better yet: Which I didn't want to see.
That moment chopped in. At home, I feel great. I'm actually a 98-year-old.

“Sometimes the outside world confronts you harder than any diagnosis.”

⁇ Grief that comes later

That event did more to me than I wanted to admit. For days I had to get used to the idea that my head recovers faster than my body. That hurts, especially with a company that does not generate income but does have expenses. 
During a conversation with our case manager at the MST, a lot became clear. It's not uncommon that as soon as you feel physically better, the mental blow follows. A grieving process, she called it. You grieve for what was self-evident. To the loss of ‘normal’. I'll get help with that. That will help, although I have to learn to live with this new reality myself.
I've learned to recognize signals. Is my voice starting to crack? Does my throat feel thicker? Do I get negative thoughts or do I suddenly get annoyed by the color of someone's socks? Then I know I've reached my limit. Or rather, that I'm trying to shift it. And then comes the essential question: How far do I want to go, and what price am I willing to pay?

“Recovery is not only healing, it is also learning to dose.”

⁇ Living outside the bank

It's moving forward. That is undeniable. I can have conversations of about an hour. I can blog. I've been building my digital sovereign world all day. I learn about Linux, Python and NixOS. If it doesn't tell you, no problem. The nerd in me is alive and kicking.
I recently visited my last client, MEPAL. Worked for five months, but people feel like friends. They were genuinely happy to see me. I got tired after that thirty-six-minute ride, but it was good to meet them. When I left, I was completely devastated. At home I had to recover, and we had more plans that day. I still have a headache from that day, but it was worth it. Some prices are paid with conviction.
I made a call on LinkedIn on Friday. Looking for a small job or maybe a job. Not steering, I can't do that yet, but I can do something. Calmly build up. Because I want so badly. And 16 hours a month keeps my company alive. Our ochre bank has now developed an active dislike of me. Or vice versa. I've been on it too much. Even my Toastmasters membership is temporarily on hold. But for those who read: I'm eager.

“Willing is strength, but being allowed is recovery.”

⁇ For now

For now, I accept that my body is not going as fast as my head desires. That progress sometimes consists of an hour of conversation, a 36-minute ride and three bites of water. I keep exploring my boundaries, sometimes cautiously, sometimes stubbornly.
I'm fine. Very clearly ahead. Just not in straight lines.

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