Simone Giertz on her brain tumour [video] | Hacker News Reader

Simone Giertz on her brain tumour [video]

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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.

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.

That is kind of the reality I've living with myself. My father died of Leukemia when I was young. After college, one of my friends died of brain cancer. Right now my wife and I are dealing with my MILs breast cancer treatment. Meanwhile I found out I had kidney disease due to an auto immune condition a few years back and now I'm on dialysis. Just the other day my sister was talking about dealing with her MILs Alzheimer's disease. Sometimes its just hard to have an optimistic view on live when it all can go tumbling down in a moments notice.

>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.

I've had the same experience. Multiple friends dying young of cancer, others to war and it shook my core beliefs about who and what is important. In almost every case, each of them were "the best of us" and were top performers destined for greatness.

A philosophical nitpick too, you're likely describing absurdism, not nihilism. Nihilism doesn't accept the self-application of meaning/purpose. Whereas other forms of existentialism do accept that self application of purpose is valid, with absurdism being the only one which offers that any self assigned purpose is equally valid to others.

I only say this because both handle the question of suicide differently. I'm on the fence between being a nihilist and an absurdist weekly.

> A philosophical nitpick too, you're likely describing absurdism, not nihilism.

You're right, thanks for the clarification! I got confused between existentialism and nihilism, I admit I don't know the differences beyond what's infiltrated pop consciousness. You sent me on a wikibrowsing quest ;)

While you're going down that rabbit hole, check out Stoicism. The Enchiridion is pretty short and sweet.

Excellent! Casual philosophy is a pastime of mine so I think you'll find study of existentialism engaging.

I wonder if the mesothelioma could possibly be from repeated exposure to stone particulates that came off during rock climbing and were inhaled. I don't know much about climbing or cancer, but that was my immediate thought.

Anecdotal, but a relative also had a benign growth in the brain cavity. It was removed, no problems. Simone's being behind her eye sounds a little more technical though.

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.

> 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.

That is pretty heavy. One of my old band-mates has a benign brain tumor, though hers is inoperable. She lives with the specter of something someday changing with it, resulting in personality change or death. (So it is a silver lining that Simone's is operable, though the risk of bad outcomes still sucks.) Yes, gallows humor helps. Perhaps that's why my band-mate was partial to songs including death.

If you can't laugh at something, it owns you.

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 holds her over. Maybe some folks will sponsor some projects.

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.

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

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.

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.

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.

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.)

:-( 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.

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

You can still die during surgery.

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.

Never underestimate the skills of medical pros and a patient's determination to stay our of a rehab hospital ;) My wife had a brain tumor, 100% resection. She's different, but it's her super power really. Only has one good ear now, can tune the kids or me out at will ;) Good luck shitty robots person! Work your magic medical pros!

My then 70 year old mom (three years ago) had this kind of surgery. She was back in action after about a week.

You can absolutely fully recover, I've done it myself. I've had a brain tumor removed 16 years ago and now I am in better physical shape than anyone I personally know.

> It's life changing, if not life shattering.

Yep, that is exactly it. Eventually, we all lose ability in our bodies, if not from illness or injury, simply due to aging. And dealing with those changes is part of life. I don't envy someone being thrown into those changes in their youth... but there is more to recovery than just gaining your physical state. Moving forward with your life, and finding happiness and joy wherever you end up is a far more important goal.

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...

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.

Jesus, I thought that was terminal when I heard the news and dude just muscled right through. Hope the best for him.

I read "It's good that her humor isn't cancerous" :D

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.

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

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.

https://www.goodreads.com/book/show/193749.When_the_Air_Hits...

Good title. Thanks for the tip, will read.

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/25899336-when-breath-bec...

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.

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,

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.

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.

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

https://twitter.com/SimoneGiertz/status/990983271705018368

She is having the surgery in the US:

https://twitter.com/SimoneGiertz/status/990983271705018368

I guess she has a health insurance as part of her employment at Adam Savage's Tested.com.

Having a Swedish citizenship, she also has the option to travel back to Sweden, sign a form and within a day or so be eligle for free healthcare there.

Why would she have to sign a form and wait a day to be eligible?

I have never had to sign a form to get healthcare here.

Probably to re-establish the residency status. The same thing is in Canada except the med coverage restarts 3 months after you settle back on the Canadian soil.

Exactly.

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!

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?

There is no way to make sure, nothing in life is "sure", especially not the random mutations that cause cancer.

Just eat healthy, exercise, enjoy life, and tell people you love them while you can.

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.

Testing is invasive and expensive, and any part of your body could become cancerous. Would you like a colonoscopy twice a year? All your moles biopsied twice a year? Mammograms and MRI twice a year?

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.

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

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

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

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.

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