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Sometimes we have an experience or a bit of knowledge that we have so much to say about but no one asks or has the patience to listen.
Like: What was it like to have cancer? Who was so and so in the past and what was important about them?
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#1
TLDR: extensive account of my first brain surgery and what led up to it.
TW:Several Medical terms and Diagnoses, my stupid humor.
So many things to say, being diagnosed with a brain tumor at 27 was rough. I was working full time. One day I was at work, and I suddenly awoke to these strange men touching me (Just EMTs doing their job, but extremely disconcerting post seizure.)
Get loaded into ambulance, ask coworker for my purse and can they call my mom (She was just barely recovered from uterine cancer herself)
Get to hospital, CT scan "Oh no you have a mass in your head! that's what caused your seizure." So I spent the rest of the night in the E. R.
I felt completely beat up.(that's what happens when your coworkers hold you in your chair as you have a seizure) I had recently figured out I have a gelatin allergy( this is relevant I promise) and was starving since I hadn't eaten since breakfast, because of my allergy they couldn't give me Jello like they normally would for hungry people. The nicest nurses in the place got me a plate of cut-up fruit. Now just imagine eating pineapple with a tongue you have chomped to shreds during your Tonic-clonic/grand mal seizure. I was so grateful even though, despite the pain.
I finally fell asleep and when I woke up again they had moved me into a private room.I needed the bathroom badly since it had been something like 16+ hours in hospital, when no one answered the call button to come unhook the necessary things so I could go I just pulled the lead wires off and went. Apparently a sudden loss of input from those lines really upsets people. Cue angry nurse waiting for me to come out of bathroom.
So because they did not know what the mass in my head was they started pushing IV antibiotics, they have to put in a PICC line and it takes them three tries to get it right. A PICC line is a catheter they thread up a vein so they can drop medicine directly into the large veins around your heart. They kept threading it up into my neck instead of to my heart so when they administered the Vancomycin I got RMS. After that they pulled the line and tried a third time and got it right.
The next step is MRI of head to get a better look at the mass. It comes back as it does not appear to be an infection but we're going to keep using the antibiotics just in case. After getting neurology to go over the MRI, "Congrats it's a tumor!"
Astrocytoma diagnosis. Let's biopsy it to make sure this isn't cancerous. I sign the papers for the burr hole biopsy and get composed for my cancer diagnosis.
Wait a minute, on second thought this has apparently been there for years as your skull has grown outward slightly to accommodate it. Since it's been there so long and this is the first problem you've had with it we don't think it's likely to be cancer and we don't want to aggravate it into becoming cancerous.We're just going to try controlling the symptoms with medication. I was talking with the Surgeon's assistant and asking why they weren't willing to check it out/operate when I wanted them to.
She must've been having a bad day because she blew up at me. " You should be happy it's not getting tested, There's a 17 yr old boy dying in X hospital because of a brain tumor." (More about why this angers me to this day later in the story)
I take my allotted time off work and adjust to my new anti-seizure medications. During my 6 months of permitted leave I continue to have break-through seizures and get taken to the hospital each time.
Finally my doctors say that since they can't control my symptoms with medications anymore they will do surgery to remove the tumor.
I asked the surgeon to take pictures during surgery. I love all medical oddities and thought it would be super cool to have pictures of my brain( Plus I am one of the few humans with photographic proof that they have a brain)
Part 2 to come soon
Final score:
6points
#2
Part 2 as promised.I was very frigthened that I would lose my most important memories during surgery and I knew I just had to trust that I could relearn them. During surgery they removed the tumor and took what they called a "healthy margin" My response was " you took what you thought was healthy brain?" Turns out they made the right call because when they tested it, it was cancerous right to the edge of what they removed. I need Chemotherapy AND radiation. Keep in mind that my time off from work has been devoured by them trying to control the seizures that they could've just removed it to begin with and i wouldn't have had to go back to work during this terrible treatment and in later years lost so many teeth from the dry mouth side effect of the anti-seizure meds.(This is why I remain angry with the surgeon's assistant from earlier) as the TLDR at the begininng states this was just the story of my first brain surgery.
Final score:
6points
#3
Psychosis.
I suffered abuse when I was a kid and as a result, developed Psychosis in my teenage years which lasted for about a decade. My type of Psychosis was one of the worse ones, in that I suffered from visual, auditory and tactile hallucinations. That meant I could see, hear AND feel things that weren't there.
For an entire decade my life was like watching a horror movie, for all the things I saw. The worst was when you could feel things, as that's the bit that really starts to freak you out and convince you that what you're seeing is actually real (I was once licked in the face by a man made of tumors and I felt it all).
If it were me and I had a friend who'd been through this, I'd probably be really morbidly curious and ask what it was like and what they saw. Every time I bring it up though, everyone I know looks at the floor and goes quiet. I'm not even that bothered about talking about it; how else are people supposed to learn, right? But nope, it freaks the Hell out of people and I think that's a shame.
I might not need to talk about my trauma any more but if you know someone suffering from Psychosis, please take the time to let them talk about what's happening to them. Sometimes talking about it is all we have.
Final score:
6points
Purplescales 2 years ago (edited)
My sympathies that sounds absolutely horrific . If you happen to need to talk again in the future, please respond here. I am interested in hearing all about it.
#4
CHICKENS
THE OWL HOUSE
My adoption
My autism
Final score:
3points
#5
Anything comic related and stuff like that
Final score:
2points
#6
Its not exactly that they don't let me, but few people have the depth to keep up in the conversation.
I love reading, and I love history. I'm also very opionated and tend to draw conclusions not written down on the page. I've gone on hour long deep discussions with my mom about american history and politics, or theology, and I love doing it. We both challenge what the other thinks. These conversations are some of my most treasured times with my mom, but it's hard to find someone else who can even get the conversation going.
Final score:
2points
#7
The Beatles
Final score:
2points
#8
Anything that jas to do with my cptsd (the c stands for complex), my anxiety, depression or anything that causes it.
Final score:
2points
MusicalNerd 2 years ago
You explained it to Purplescales yesterday, and I tell you, that should NEVER have happened. *hugs* Wanna talk more 'bout it?
#9
I found out I have cancer and honestly I'm more afraid then I've ever been but I feel like when I try to talk to people about it I somehow end up reassuring them that I'll be OK. I end up feeling more alone then ever.
Final score:
2points
Angi (Submission author) 2 years ago
It's Basal cell carcinoma which fortunately isn't generally fatal but it can be disfiguring. I need moh surgery in which they remove layers of skin until the cancers gone. One of the worst things is evey spot I see I now think is cancer
#10
My random interest of the day or really controversial and deep topics. People like small talk a lot for some reason. I would love to hear about people's opinions on stuff in a respectful environment but they don't really do that sometimes. Also my random interests are specific and go into a lot of detail and people don't really care. I stop talking about it when I realized all I got from them was "mhm. Yeah"
Final score:
1point
#11
Softball/baseball. I've been playing softball for about 6 years now, and before that, baseball for 20 years growing up and into adulthood. I mostly just want to spread my knowledge of the game and teach people or answer people's questions on how to be a better player. I just think passing down your knowledge of something you love is important.
Final score:
1point
Purplescales 2 years ago (edited)
Yes, giving other people the cliff’s notes from the school of hard knocks is important
#12
How I'm incredibly scared when I grow up there's going to be nothing left for me. How I feel like the world is against me.
Final score:
1point
Purplescales 2 years ago
I’m sorry that you have to be frightened. If you feel no one is on your side you can look into support groups, or if you have family that’s perhaps just unaware of how you feel, a candid chat when no one is upset, might help.
#14
The history of Taize - a Christian community devoted to reconciliation.
Final score:
1point
#15
The guy I like and all the cute stuff he did that day...
Final score:
0points
Purplescales 2 years ago
I could recommend that you write it in a diary, provided he remains your person of interest in the future they would be fun to review.
#16
It changes... mostly I’ve learned to shut up though, because otherwise I’ll see their disinterested and get sad- BUT my ocs, and the stories and plans I have for them, and the random obsessions Pinterest gets me into. Like currently? Arcane, that show with Jinx. I’m obsessed with her, and I’m thinking about making my oc end up like her because she’s very close already. Have I ever watched the show? No. Do Inolan to? Probably. not. But the edits of Jinx make me very happy
Final score:
0points
Purplescales 2 years ago
I am no stranger to the Pinterest rabbit hole, I had to self ban to get some sleep.
#17
My life or my side of the story
Final score:
0points
#18
FNAF. I love it and nobody lets me talk enough about it. Very upsetting. Once (when I was like, early teens, I found a friend group that enjoyed talking about the stuff I liked. Unlucky me, we moved!
Final score:
-1point
Purplescales 2 years ago
You live in the neighborhood of the biggest group of FNAF fans, online. https://steamcommunity.com/app/319510/discussions/
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