Diary October 2002


PEG, continued

On Tuesday night my PEG gave out completely. Right now I have a 4cm tube sticking out of my stomach and the cap no longer fits. The contents of my stomach were spewing out. After closing the tube off with a clamp, my PEG spent the whole night dripping fluids. It’s not a good time, let me tell you. The next day, Floor discovered that the clip we use to reseal bags of peanuts was the perfect way to seal the tube; no leakage. Too bad it’s so huge. Every time Hein put me on a chair, there was a chance of it coming loose. My greatest fear was, and is, the tube retracting inward, meaning I would need a new endoscopy.

On Wednesday we visited the AMC. Just as I needed him the most, it turned out our professor wasn’t available that day and nobody else was trained to install a new PEG. Thus, we had to improvise. In the end, I went home with a clamp used for umbilical cords (my idea) and a bandaid to keep the tube from going inward. I can’t use my PEG anymore, but that’s not much of an issue. I’m perfectly fine without it. The average lifespan of a PEG is 2 years, I’ve had mine for 2.5. I’ll hopefully be getting a new one on Monday.

By now, I’ve got it. It was a cakewalk. Despite that, I’m always incredibly nervous in moments like this one. My mouth cramps up and my teeth chatter. Good luck talking to doctors, who are likely already low on time and patience. The worst part was the laxative treatment to get the old cap out of my system as quickly as possible. I took 2 litres of laxatives in 2 hours. Luckily it was relatively manageable, no incidents. My only question: did I actually excrete the cap? I hope this marks the end of my “troubles”.

Aesthetically, my new PEG leaves much to be desired. The cap is bulky because it has three valves; one for water, one for medicine and one to fill the balloon in my stomach with water. As a consequence, it keeps tumbling around under my bra. When I look down I can see it bulging out. Right now it’s still concealed by winter vests, but come summer it’ll be very visible. All of that for a thing I barely use. For that reason I’ll probably have a word with my doctor. These troubles aren’t over yet.

Power outage

It’s a thought all of us have sometimes; what if the power were to go out right now? It happened on Sunday. The light had been flickering for a while beforehand, which is when the thought first crossed my mind. I calmed myself though. The lift was still working, so I’d just go upstairs. Barely a minute after I got off the lift, everything went pitch black. What if I’d been on the stairlift when the power went out? Luckily, Floor and Hein were quick to find some torches. Apparently, our whole street was out of electricity. For a while, I thought “luckily I’m already upstairs, I can still go to bed. But I forgot that my adjustable bed is always upright to make getting in and out easier. That position makes sleeping in it impossible. For a lack of better alternatives, I decided to sleep in a garden chair. In the middle of the night, the lights went on again. Anxiety came over me again. I don’t like surprises.


I’ve never been much of an adventurer, but I have never needed as much predictability in my life as I do right now. I had barely recovered from my PEG and electricity hijinks when my shower chair got stuck one morning. While I’m in an upright position I can’t hold my head up straight, meaning I can’t talk and everytime I pass a threshold I slump, go rigid and spasm. That means I’m in my chair, stiff as a board, slowly sliding down. Time to think of a temporary alternative again. Another disruption, as if I needed any more.

Art route

There was an art route in Oegstgeest on Sunday. Artists opened their doors and a few schools had expositions of art made in Oegstgeest. We had good walking weather. Because of limited accessibility, we decided to focus on the schools. Two times, I was parked outside, in front of the stairs. Schools from the 30s liked their stairs. I couldn’t see anything. By a stroke of luck, we found a gallery close to the mall, where I bought a pendant. That saved the day. And, like I said, it was a good day for a stroll.


Every email I have to answer (and I usually answer every single one), I flag. That way, I know how much work is still ahead of me. Sometimes I get disheartened when I see how many flags are still left. Other times, they invigorate me and I make quick work of them, leaving me content. But the following day, I find I already have a backlog. My happiness was fleeting.

Crap weekend

Everyone has an empty weekend every once in a while; not a thing to do. Sometimes, it’s a good time. Not this weekend. My standards for weekends aren’t exactly high; I want to at least have seen someone or have gone outside, preferably both. This weekend, I didn’t get to do either. On Saturday I was overwhelmed by self-pity. That rarely happens. I see my situation as a given, but right then I was extremely upset about being stuck in my chair, I felt bad for myself. I couldn’t even look at my computer, my eight-thousandth game of bridge couldn’t hold my interest (I still haven’t gotten any better). On Sunday there was a storm so we couldn’t go into town. In short, a crap weekend.

Hein 50

Hein will be 50 on November 6th. We’ll be celebrating it that Saturday in small company. I asked friends and family to write some things about Hein so I can compile it. You see, I have a computer program for making newspaper layouts. They always come out looking lovely. I have some work ahead of me these coming weeks.