Friday 13th November, one year on
A year ago I was told: you have oesophageal cancer.
Still here folks, been wild ride. Almost all my energy has been sucked away into imperatives either to stay alive or sleeping or being ill.
This was not the situation until rather late. Poorly managed chemotherapy and unnecessary delays did for me.
This is not good, the formal report to my GP says the prognosis is poor. However there are plenty who were in a worse state, some from 20 and more years ago.
The most recent scan shows nothing abnormal. (CT scans even with contrast enhancement dye still have a limited resolution, plus of course any problem has to be spotted by a human)
Since I last wrote I’ve been through a 5 week course of chemothrapy and radiotherapy aimed at the bed where the cancer was breaking out. This happened to be my heart so the radiotherapy (x-rays) have been aimed around there.
The effect peaks some time after the end of treatment… sure does. I’ve been through a tough time. Upset more than my heart too.
Good news… yesterday I moved my PC from the attic to a ground floor living room where it is warmer, more suitable for me at the moment. This has twists because I also want to use the same PC from my bed via remote control. Not so easy to do because there is no wired ethernet in that room but WOL (wake on lan) doesn’t work with WiFi. (I’m writing simplified)
After much head scratching I figured a workaround, most WiFi range extenders can also act as a WiFi to dumb ethernet adapter, the radio link notionally vanishes. And… WOL does pass through, it works. (a wrinkle for someone)
The idea here is keeping me off my bed, a push toward normality. I might even start to write long overdue blog articles.
Having more energy, less prone to having to lie down and sleep after some small job seems to have a lot to do with finally following dietitians advice. (I have at least four of these ladies) I’ve gone back to using the feed pump at night, a smaller amount than before so I can calculate a lower feed rate, definitely preferable. This probably tops me up with about a third of the calories I need.
They’d guessed I was running on empty.
Maintaining a body weight is proving hard, I am probably losing. Given I am almost underweight anyway, this is unwelcome. (
Since the operation I can eat but only in small quantities, in effect half (or less) what you eat for a meal. I might then be able to eat the other half re-heated a couple of hours or so later. Try as I do eating enough is difficult, if only from forgetting or being asleep. Then there is can’t eat and drink at the same time, a bother of a limited capacity.
As I manage to exercise more, do things, the need for calories will increase. According to the surgeons a certain amount of stretching of the stomach will take place over time. I hope this is enough.
Things are getting better.
Any questions? If I can help others, great.
1. Prior to the operation I was fitted with a JeJ feeding tube, saved my life for when I could not eat or drink. (the alternative would have been in-patient intravenous feeding). This is a 3mm OD silicone pipe.