Explanation to my brother during the last weeks was very limited because of reasons: my brother was way too distracted, without a clear indication why (many things going on in his life), the side effects of my radiation therapy were at it's peak during X-mas/new-year, and
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@NvCronenburg was recovering from the long surgery to remove a very big and a less big cyste (and now getting adjusted to having immediately entered menopause)
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@NvCronenburg My brother was somehow way more worried about me than @nvcronenburg, which we could not pinpoint to a cause: his brain works in even more strange ways than ours, and it is tough to assess his state given the effects of his mental retardation and autistic spectrum disorder.
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@NvCronenburg It was also very a very unstructured period: he being off from work, we not having enough energy to cover for that whole period, his caretaking having lots of "Sunday shifts", weekly rhythm changed, and special dates early this year:
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@NvCronenburg her birthday, his birthday, dads date of death and his colonoscopy (and whole bowel irrigation) are within 2 weeks of each other.
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@NvCronenburg Handling his birthday was worrying him, as it's a custom to do birthday treats for colleagues at work/hobbies, but last year his work department merged into a much bigger one, and last year mom forgot to call him (because of Alzheimer's) of which his anger back then returned.
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@NvCronenburg So we limited explanation on my condition to "very serious bowel problems", not further explaining they were caused by radiation therapy.
Instead we focused on the festivities and preparing him for his colonoscopy.
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Instead we focused on the festivities and preparing him for his colonoscopy.
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@NvCronenburg He misplaced the date his colonoscopy to be last weekend because his caretakers totally forgot to fill in his paper diary, which messed up his sense of time and schedule.
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@NvCronenburg Luckily we planned for him to stay at our place during the weekend and the second half of this week (the colonoscopy is on Friday) so we could again explain the planning, and re-explain what would happen to him (somehow caretakers forget about that too: common sense is rare).
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@NvCronenburg Next to explaining, we had to re-do his groceries and re-prepare most of his meals as caretakers have problems following simple instructions on allowed food during colonoscopy preparation.
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@NvCronenburg The result is that we ended the weekend way more tired than we started, so yesterday and today we had to relax so we are fit enough for Thursday and Friday, and have some slack on Wednesday for preparing a few late birthday treats to distribute at his horseback-riding class.
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@NvCronenburg My radiation therapy itself was OK. I was amazed at how much has changed in 20 years of radiation therapy. Equipment, personnel, everything at an astonishing higher level now.
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@NvCronenburg What made radiation therapy cumbersome, time consuming and stressful is the requirement of having a full bladder and an empty rectum.
Luckily I found beforehand that physical exercise helps increasing the urge to defecate: so I went by bicycle to the hospital for 5 days.
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Luckily I found beforehand that physical exercise helps increasing the urge to defecate: so I went by bicycle to the hospital for 5 days.
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@NvCronenburg The bad thing with defecating is that it usually also urges the bladder to empty itself. Which voids the full bladder requirement.
That means drinking at least half a liter of water and waiting close to an hour for the bladder to fill up again, then get radiation treatment.
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That means drinking at least half a liter of water and waiting close to an hour for the bladder to fill up again, then get radiation treatment.
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@NvCronenburg The full bladder is needed so the intestines other than the rectum are outside the radiation therapy zone. The bladder itself is better resistant against stray radiation than the intestines.
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@NvCronenburg I was prepared for side effects of radiation treatment, but not for them to kick-in all at once and so heavily exactly 9 days after the radiation therapy ended.
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@NvCronenburg It is not fun spending most of the day sitting on the toilet with rectum cramps almost vomiting because your body is so confused about the consistency of feces (gas/liquid/solid) while recovering from the radiation therapy.
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@NvCronenburg Luckily the cramps and urges faded gradually during the next week, and wearing diapers only lasted only for 13 days. I'm down to 10-12 hours of sleep per day instead of far over 14 back then. But I'm still constantly tired.
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@NvCronenburg This means I have a bit more energy now, and started practicing cymbals/percussion with the @adestmusica brass band again.
A big step, as it helps me distract from the situation.
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A big step, as it helps me distract from the situation.
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@NvCronenburg @adestmusica With some luck, I can play for 2 evenings during the finale of @claudiadebreij's shows at @theatercarre this week: Wednesday and Saturday evening. She has a great show, and it will help me and @nvcronenburg distract.
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@NvCronenburg @adestmusica @claudiadebreij @theatercarre Saturday night, we will have dinner and stay at @INKHotelAMS for some serious relaxing anyway.
Fingers crossed my brothers colonoscopy results will be OK. The goal is to ensure he does not have to undergo the same treatments I have to.
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Fingers crossed my brothers colonoscopy results will be OK. The goal is to ensure he does not have to undergo the same treatments I have to.
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