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Jeroen Wiert Pluimers Profile picture
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13 Jun, 5 tweets, 4 min read
@JerryVermanen Ik heb mijn "maar je ziet er helemaal niet autistisch uit" T-Shirt aangetrokken (dank @biancatoeps !)

toeps.nl/shop/product/t…

Daarnaast meld ik het tevoren en bespreek ik kort hoe het bij mij het beste werkt.

Ze zijn daar overigens heel blij mee,

1/
@JerryVermanen @biancatoeps want velen hebben die angst, maar zeggen het niet (ga er maar vanuit dat 1 op de 3 mensen prikangst heeft, ik zoek zo even een linkje daarover).

Als aanvulling op eerst wat bij mij werkt:

2/
@JerryVermanen @biancatoeps 1. korte uitleg wat ze gaan doen en hoe
2. mijn voorkeur-arm aangeven
3. vertellen dat ze rond het prikken niet tegen me praten
4. wegkijken van waar ze prikken, focussen op iets anders zodat ik me op ademhaling han richten
5. "ja" als ze kunnen beginnen

3/
@JerryVermanen @biancatoeps Je bent zeker niet alleen, en het is al super dat je er nu al over begint. Dat maakt het hopelijk straks makkelijker voor je.

Hierin staat dat ruim 35% angst heeft plus nog wat tips: rtlnieuws.nl/tech/artikel/5…

Sterkte voor straks. Ik mag vanmiddag de 2e en dat komt goed (:

4/4
@JerryVermanen @biancatoeps Prik 2 AstraZeneca zit erin. Beetje licht in het hoofd omdat de angst zakt. Even half uur wachten allergisch voor NSAID's, dus even zekere voor het onzekere nemen.

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More from @jpluimers

Jeroen Wiert Pluimers Profile picture
2 Apr
Triggered by @jilles_com (link: next tweet), I was diagnosed with autism 18 months ago coincidentally in the same month my mentally retarded brother got the same diagnosis, followed by training.

I got a vocabulary explaining so many good and bad things in our lives!

#AutismDay
First the promised link, as it is a start of a wonderful thread:

The diagnosis tremendously helped me get through all the treatments and care after my rectum cancer diagnosis 17 months ago.

Yes, these diagnoses were only 1 month apart!

#AutismDay
Being able to explain I'm autistic (as one does not look autistic at all: hello @biancatoeps), the consequences it has in approaching me, how to sense when I get overloaded and what happens when I do were key in getting proper care.

#AutismDay
Read 17 tweets
Jeroen Wiert Pluimers Profile picture
2 Dec 20
@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/
Read 10 tweets
Jeroen Wiert Pluimers Profile picture
5 Sep 20
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.

1/
(Needle) angst and heat radiation made me sweat like crazy and the stoma prolapse moved itself out of my body very far both before and after the procedure.

Monday the results will be clear during my surgery appointment to prepare for friday surgery.

Loads of questions...

2/
I am still scared for the liver/gallbladder part, but I think I found out why.

If this does not work well, which they will only find out during surgery, I will have far more metastases than detected now, and require at least a new liver soon.

3/
Read 4 tweets
Jeroen Wiert Pluimers Profile picture
24 Aug 20
@archer_rs The utter stupidity is fitting.
@archer_rs Note that I find French a beautiful, but tough to learn language. This has to do both with dyslexia and autism. I still try. Which leads to odd and humorous situations.

1/
@archer_rs A long time ago, I traveled from the 25th W116 anniversary meeting near Frankfurt to a marchingband gig in Northern France.

(It's 20+ years ago, so I forgot the exact city and Google is not of help, so think a city like Lille, Tourcoing, Roubaix or Valenciennes).

2/
Read 20 tweets
Jeroen Wiert Pluimers Profile picture
22 Aug 20
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.

1/
If you can help anybody affected by the
#CZULightningComplex, please do. Many families there are going through a rough time for the foreseeable future especially because of the combination of fires and COVID.

If you are in that area: be careful, be safe.

2/
For me it is mixed emotions time.

The chemo did make the cancer operable. Some tumors have shrunken, a few small ones are invisible, probably because of the chemo-induced hepatic steatosis, and no new tumor were found.

3/
Read 10 tweets
Jeroen Wiert Pluimers Profile picture
14 May 20
Today was a tough day: MRI scan and pathology results, treatment plan, and trying to fix the stoma base plate leakage.

Pathology was mixed: previous biopts indicated high grade dysplasia, but no detectable adenocarcinoma. Full pathology of the removed tissue was worse:

1/
a still present adenocarcinoma (bummer) with the excision having clean margins (yay) and one of the 32 lymph node being contaminated (meh).

Some metastases are already suspected in the liver (and maybe other places) because of CT-scan, so the MRI was really important.

2/
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.

3/
Read 7 tweets

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