
Simone Giertz on her brain tumour [video] - ap46
https://www.youtube.com/watch?v=tpa4kp4lK60
======
AceJohnny2
Wow, talk about curveballs. That's a terrifying prospect, and I wish Simone
the best for her surgery. I'm glad to hear it's not malignant, and I hope that
holds.

I've seen cancer show up unexpectedly among two friends. One discovered she
had leukemia, and underwent chemo and a bone marrow transplant. She died from
a lung infection because of her weakened immune system after the transplant,
not even a year after the initial diagnosis. She had just turned 27.

Another friend discovered they had an extremely rare form of mesothelioma, the
asbestos-caused lung cancer, except theirs isn't due to asbestos and isn't in
the lung. There are less than 300 documented cases, rare enough that there are
no experts, and they're a case study. They're currently living with the
uncertainty in their mid-30s.

Both friends were in great physical health (the former made the regional swim
team, the latter climbs the highest peaks in North America for fun) until the
diagnostic.

Seeing this has reinforced my nihilism (there is no meaning to life but the
one you apply to it), and gave me greater understanding that our multicellular
bodies are a peace treaty among cells that is likely to break down at any
moment.

~~~
middleclick
A close friend of mine, when we were 21, had heart attack and passed away. No
family history of heart attacks, he was in excellent shape (cycling was his
life) and just randomly out of the blue.

I do try to stay fit and eat healthy but there are times that I realize that I
have no control over randomness or my genes. That is humbling and scary at the
same time.

~~~
Barrin92
>A close friend of mine, when we were 21, had heart attack and passed away. No
family history of heart attacks, he was in excellent shape (cycling was his
life) and just randomly out of the blue.

Not sure if this is the case here, but fatal heart attacks in healthy
physically active young adults are often the result of Hypertrophic
cardiomyopathy.

This is a fairly common (~ 1 in 500) inheritable condition that can be _easily
diagnosed by ultrasound_. Everybody do yourself a favour and get at least a
routine checkup in every few years. It prevents deaths.

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wanderfowl
This makes me very sad, but I've also gotta highlight her skill at perfectly
nailing the tone of that video. Humor, sadness, gratitude, and fear, in
excellent measure.

Plus, I'm thrilled to see somebody else with a nice sense of gallows humor.
Sometimes, we have to laugh so we don't have to cry.

~~~
strictnein
> Plus, I'm thrilled to see somebody else with a nice sense of gallows humor.

I was honesty expecting her to wheel out her robot arm holding a scalpel.

------
protomyth
Well that blows. I guess it is a reminder to watch for the little things on
your head and how you feel. My cousin is going through the same "not cancer"
but problematic brain tumor problems. He was further hampered by the learning
he had a brain tumor from the billing department as opposed to his (now
former) doctor. His only warning was a stiff neck for days on end.

Here's hoping that her Paetreon
[https://www.patreon.com/simonegiertz](https://www.patreon.com/simonegiertz)
holds her over. Maybe some folks will sponsor some projects.

~~~
Dangeranger
This is a great time to become a patron. Simone and her team are going to be
relying on the income from Patreon for at least the next several months.

I'm so glad that Patreon exists for moments like this, when a person just
needs some time to deal with a health or a family issue and cannot focus on
creating new material to maintain their finances.

~~~
crunchlibrarian
There's something deeply wrong with a society when everytime someone gets
diagnosed there is a call for money to be sent via patreon/gofundme

I'm not opposed to the concept really but you get that dumping more money to a
middleman is more of a symptom than a solution

~~~
JshWright
Huh? People like the stuff Simone creates, and want her to be able to continue
creating stuff. There's going to be a period of time where it will be tough
for her to make money, and by supporting her on Patreon you make it more
likely she will be able to return to making stuff after her recovery.

~~~
bigiain
I completely agree with you - but crunchlibrarian is right.

This is exactly the sort of thing the social safety net _should_ cover.
Otherwise only popular/beautiful people get the help they need.

There's a whole bunch of other people out there facing equally rough times,
and because they don't have a million youtube subscribers they are not going
to have any chance of riding it out on Patreon donations.

100% support Simone - but don't do it pretending there's nothing wrong with
society and the way our governments treat _most_ people in awful situations.

~~~
gowld
I don't know if Simone is a citizen or Permanent Resident in the US (if not,
she should seek government support from her home nation), but anyone who is a
citizen or Permanent Resident in the US is eligible for >1yr of temporary
Unemployment insurance, as well as Medicare (age 65), Medicaid, CHIP, and
SNAP.

~~~
bigiain
That's good to know. (For the record, I'm from Australia - and most of what we
hear about healthcare costs and social security in the US are staggeringly
frightening.)

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zitterbewegung
:-( I really hope Simone Giertz pulls through on this. I really like her
videos and she has been an inspiration for me to make shitty arduino projects.

~~~
merb
well I guess she does. non cancerous tumor. but it could probably have wierd
side effects on her while removing it.

I just looked into her videos and some stuff is really funny. like where she
had a robot that served her a soup. it also was an ad for google home and at
the end she said, google home probably won't come with a robot that will serve
soup, which is probably a good thing :D

~~~
zitterbewegung
You can still die during surgery.

------
coupdejarnac
It's good that her tumor isn't cancerous, but she's going to be out of action
for at least a year. I see other people saying that she can make a full
recovery, but this is not the type of thing you ever fully recover from. Two
of my girlfriends had brain tumors, both in their 20s. It's life changing, if
not life shattering.

~~~
neurotech1
Sen. John McCain returned to the senate 10 days after "minimally invasive"
brain surgery above his left eye, and he is 81.

[https://en.wikipedia.org/wiki/John_McCain#Brain_tumor_diagno...](https://en.wikipedia.org/wiki/John_McCain#Brain_tumor_diagnosis_and_surgery)

~~~
mulmen
He's also John McCain. Say what you want about his politics but that guy is
tough.

"John McCain survived this" is not a pitch I want to hear from anyone,
especially a doctor.

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Judgmentality
I'm a big fan of Simone, and I'm a big fan or her morbid sense of humor.
#tumorhumor

Obviously I can't predict the future, but it seems like she's going to be
okay.

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agumonkey
It sucks but if it's not malignant it's a huge relief (even if it's a hugely
bad news).

~~~
bobowzki
While not exactly good news it's a huge relief it doesn't appear malignant. I
have worked as an anesthesiologist in neurosurgery and these patients
generally make a full recovery.

~~~
ngvrnd
[https://www.goodreads.com/book/show/193749.When_the_Air_Hits...](https://www.goodreads.com/book/show/193749.When_the_Air_Hits_Your_Brain)

~~~
petercooper
Fantastic book, and if anyone liked this, this one is also fantastic (though
better in audiobook, I feel, as the narrator was so emotive):
[https://www.goodreads.com/book/show/21086818-do-no-
harm](https://www.goodreads.com/book/show/21086818-do-no-harm)

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jacquesm
Gah that sucks. She's pretty brave for putting this out there. And incredible
how she's able to have a sense of humor in this situation, I'm pretty sure I'd
be mean as hell for a while.

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GW150914
Oh damn, she’s an inspiring person, and I hope that this goes as well as
possible for her. No matter how tough and funny you are, a curveball like this
is always going to be a terrible shock, but the strength and humor will
definitely help with recovery. I’m confident that her many fans (myself
included) will wish her well and be waiting for her return when she’s ready,

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sus_007
I can only imagine how she must be feeling right now. But, tumors are such
nasty conditions, almost unpredictable consequences. I hope her operation goes
well.

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nodesocket
Oh wow. Feel super bad for her and wish her the best of luck and speedy
recovery.

At the same time this absolutely terrifies me and shows how fragile life is.
Thankfully Simone is in Sweden so she does not have to worry about the
financial impact (she has enough to worry about). I am self employed here in
the US and pay for my insurance plan 100% out of pocket (don't qualify for any
subsidies). The plan is frankly god-awful with something like an annual max
out of pocket of $10,000 and $7,000 deductible. A cancer diagnosis would
financially ruin me even though I pay nearly $400 a month in health insurance
premiums. If I was diagnosed with cancer, the last thing I should have to
worry about is how I am going to pay for it (especially seeing as I pay more
than my fair share). The reality is I have way more of financial burden even
though I am paying full price than somebody who get's their plan subsidized
from Obama Care. They pay significantly less (sometimes nothing), yet have
better care than me.

I can truthful say, I would fear the financial impact more than the cancer
which is a scary reality.

~~~
timack
She has posted on twitter that she is staying in the US for treatment.

[https://twitter.com/SimoneGiertz/status/990983271705018368](https://twitter.com/SimoneGiertz/status/990983271705018368)

------
staunch
I hope people and technology can fix her completely and this ends up just
being a bump in the road of her life. She's already made the world better (yet
again) by sharing this experience. We all need to be reminded of how precious
life is and how important it is to improve medical technology.

Good luck Simone!

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dvcrn
Currently people in my life left and right get diagnosed with cancer and it’s
awful.

I wonder what one can do to make sure to not run into the same surprise. I am
guessing because of the many kinds of cancer that you can’t just do a “cancer
checkup” twice a year?

~~~
rando444
Cancer cells pop up in everyone's body all the time, and your immune system is
fighting them off on a regular basis. It becomes a problem when your body is
either overwhelmed or these things come up so often that it no longer
recognizes the threat.

If you don't want to run into the same problem, the absolute best thing you
can do is to keep your body in the best shape possible. Physical exercise
often, not overeating, getting an appropriate amount of rest.

Everyones' bodies are different and YMMV, but the tools to prevention are well
known, they just sometimes don't coincide with people's chosen lifestyles.

You might want to also consider adding a little more olive oil to your food,
and/or researching it more. It's really quite impressive.

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Waterluvian
I'm still jealous of Simone's natural voice and cadence lending itself to her
style of humour. You know, just one of those people that just by the way they
talk, funny stuff is amplified.

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martin1975
Thank God it's not a glioblastoma. Had an acquaintance die from it after years
of resections and chemo. She'll pull through.

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petecooper
Sad news. I'm glad I waited 'til the end of work before I watched this and
turned into a crying mess.

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therein
Wow, it is crazy how unpredictable life is. I hope she will be okay.

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berg01
Hesitated whether to share this or not, in case Simone would read it...

My (then 70yo) mom got diagnosed with something very similar three years ago
(golfball-sized tumor just behind one of the eyeballs). It was super scary for
everyone involved.

The surgeon (in Linköping, Sweden) was one of the top specialists globally on
this type of procedure - I did a ton of research before the surgery.

Recovery took a few days. They were wonderful at the hospital.

She's fine now, but her eye-sight on the affected eye is like 30%. I think the
reason for this is that it was diagnosed quite late.

I'm quite surprised that such a young person like Simone (she's 27 according
to wikipedia) has a golf-ball sized tumor.

