@Kareja821 @2unter2 I'm going to reply in English as (see profile) right now too little energy to do this in proper German. Sorry for that.

Some 20 years ago, we brought my mentally retarded brother to a winter holiday where we could stay at my best friends place 30 minutes eastward of Bern.

1/
@Kareja821 @2unter2 We don't have kids, but I've known since I was 10 that someday I would become responsible for him. So he has been our "big kid" for quite some time now.

By now we know a bit more about his level (IQ slightly less than 50, mental age about 36 months), than we knew back then.

2/
@Kareja821 @2unter2 So indeed he is a kid in a grown up body, sometimes with remarkable consciousness (he immediately related my intestine problems with what my mom had in the early 1990s).

I digressed (I'm autistic, similar to him), so back to winter holiday early 2000.

3/
@Kareja821 @2unter2 One day we decided to go sledging with all of us near Interlaken.

My best friend went down hill on his sledge first followed by (now) my Eega, then my brother, and finally me.

By now we know that somehow we both have a habit of "things happening to us".

4/
@Kareja821 @2unter2 On a wider part of the slope, I slowly overtook my brother, and while looking backwards, I saw him trip over, so I immediately stopped, yelled for Eega and friend, and walked back to my brother.

He was crying, not from being startled, but from pain.

5/
@Kareja821 @2unter2 That was unusual, as his pain barrier is way higher than mine, where I'm like a baby, and he's like a warrior.

He could not stand up, and barely sit, so we improvised a way to get him further down hill towards the car and finally succeeded.

6/
@Kareja821 @2unter2 So we managed to get him to the car, and drive him to the Spital Interlaken.

Since he speaks no German, I was his translator (I was not yet custodian, that's another sad story maybe for another day).

They X-rayed his spine, but the results were inconclusive.

7/
@Kareja821 @2unter2 So they wanted to keep him overnight. I was OK with that, so I made some phone calls (this was the era where international GSM phone calls went by the second) to both my parents and the health insurance company so neither would be unprepared.

8/
@Kareja821 @2unter2 Then I discussed with the hospital staff what to do about the night as he would not be able to properly communicate (both from a language and a mental level).

They managed to arrange an extra bed - a real bed, somewhere in between an emergency bed and a hospital bed.

9/
@Kareja821 @2unter2 Of course we had slept next to each other before, but this time it was so different.

Somehow by instinct, every time he whimpered, moved, or even changed his breathing rhythm, I woke up and checked him out, then fell asleep again.

I learned the parent/kid bond that night.

end/

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More from @jpluimers

5 Sep
MRI last thursday was a pain: the infusion needle didn't go in well at first, and took a while to settle. In the midst of the MRI the contrast infusion blocked, so part of the MRI had to be redone.

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@archer_rs The utter stupidity is fitting.
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Too much to let sink in, not just about the hospital results and upcoming surgery, but also about Cindy and @danny_thorpe who just lost their house in the California forest fires, despite it being on the humid side of the Santa Cruz mountains.

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Today was a tough day: MRI scan and pathology results, treatment plan, and trying to fix the stoma base plate leakage.

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a still present adenocarcinoma (bummer) with the excision having clean margins (yay) and one of the 32 lymph node being contaminated (meh).

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MRI indicated 4 or 5 visible tumor regions in the liver, which (given the means of spreading) means there easily can be more (even outside the liver) that are not visible on the scan resolutions.

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Read 7 tweets
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Me and my bags.

State: devastated.

Today I get an MRI scan to determine state of the rectum cancer metastases in the liver.

No "if metastases", but detailing may 2nd CT scan results.

A new phase for which I am not ready, but have to be.

This was so much *not* the plan.

1/
I cried many times over the last few days, after decades of not doing as in the past it would not help.

So that's why there were no updates the last few days. Too many things to process and arrange for, a completely overflowing autistic mind which saw everything at once.

2/
Crying brought some relief, but did not take away the feeling of the shattered dream where I would outlive my mentally retarded and autistic brother. This is not to diminish the eega in any form: the best thing that ever happened to me.

3/
Read 4 tweets
1 Apr
@LangeDikkeTrien @Giuliettaman @mhbroekhuizen Ik had de link al gevonden.

Het kistige met Duden voor mij is dat ik geregeld niet vanuit een betekenis het woord in Duden kan vinden.

Teminste: mijn Google-fu is daar nog niet goed genoeg voor.

duden.de/rechtschreibun…
@LangeDikkeTrien @Giuliettaman @mhbroekhuizen Ik heb als kind spelenderwijs Duits geleerd door heel vaak op vakantie in een Konvikt in Bad Münstereifel tussen het personeel te zijn. Ze spraken vrijwel geen Nederlands, maar met handen en voeten leer je langzaam dingen.
@LangeDikkeTrien @Giuliettaman @mhbroekhuizen Wat dan niet helpt is woordblindheid en (wat ik pas een half jaar weet) autisme.

Het heeft bijvoorbeeld heel lang geduurd voordat ik snapte waarom het Duitse woord voor suikerklontjes Würfelzucker is.

Suiker en Zucker snapte ik wel, maar klontjes en Würfel niet.
Read 5 tweets

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