Hi y'all, I'm a teen currently being treated for brain cancer with proton beam therapy after having two craniotomies and a ventriculoperitoneal shunt installed into my brain to firstly get rid of as much tumour as possible and to deal with the ensuing hydrocephalus caused by damage in surgery :)

Am doing this because I want to both answer questions on a somewhat touchy subject that most don't feel comfortable discussing, and because I enjoy talking about this issue because it helps me deal with it :D

Don't hold back, if you have a question, just come out with it, I'm not particularly sensitive haha

The Room/Machine: https://i.redd.it/ncq62aw6qbw01.jpg

The Mask: https://i.redd.it/1hivoh8recw01.png

My Proof: https://i.redd.it/6i1ieinxdbw01.jpg

I know this may not seem like much proof but that's the side view of the tumour at initial diagnosis, I'm not gonna post my medical documentation here for obvious reasons

Comments: 1227 • Responses: 103  • Date: 

AltxAccountWilla3006 karma

What superpower are you hoping the proton beams give you?

SCP1063475 karma

Teleportation, shit'd be awesome

Pyro_Dub259 karma

Wasn't a proton beam hulk's thing? Im not really up to par with my comic character origin knowledge.

SCP10665 karma

Not sure but it does ring a bell. Perhaps I'll turn green! Definitely not muscly though! :d

martinaee30 karma

So I had a month of targeted radiation to the chest after my transplant in 2016 for Hodgkin's. What is up with this and is it similar?

And the masks are kevlar? Didn't know that. I still have mine lol

SCP10666 karma

What do you mean what is up with this? And this'll be six weeks of protons being shot into my brain to deal with a cancerous tumour, when the protons hit they release their energy in the form of radiation and hopefully shrink/kill off the cells.

From what I know of H's lymphoma this isn't too similar due to it growing from the meninges not the lymph nodes but there was some isotope uptake in my lymph nodes in my recent PET/CT scan so that needs to be checked out

David4741089 karma

How did you discover you had brain cancer?

SCP1061576 karma

Huge pressure headaches concentrated at the base of my skull, temples and eyes as well as big vision problems, dizziness and fatigue not to mention the brain fog.

brennanx1377 karma

What type of vision problems?

SCP106728 karma

Massive sections of vision just turning off/going dark, partial blindness especially when laying down or straining for something. Didn't help I already had vision related darkening issues from my low blood pressure upon standing

womb0t230 karma

i wish you everything you ever dreamed of and more, no1 should go through this, let alone a teenie!!! the one thing you're body has on it's side is youth and strength, may the beam's be with you!

SCP106349 karma

Thank you, so basically just infinite chocolate and a god-tier internet connection?

womb0t135 karma

you're wish is my command.... send me a postal address (annywhere dosent haave to be you'rs)...even you're local police station for trust reasons, ill send you chocolate.... cant send internet.. sorry :(

SCP106164 karma

Sorry my dude, I'll just accept the chocolate in spiritual form :)

brennanx166 karma

Slightly unrelated but I’ve been on oral chemos since age 3, man does that stuff mess you up over time. Your surgeries and condition are more complex though, so I can only imagine the pain/annoyance of that. Fortunately science and technology never cease to advance, so I have high hopes for us. I wish you the best in your treatments and life!

Ps- Please try to post an update after the treatments if you’re up to it, I’d love to hear how it went.

SCP10644 karma

I definitely will post an update!

Carnith12 karma

Do they expect your vision to improve or will you have low vision?

SCP10659 karma

It already has, I regained my peripheral vision after surgery and now it's back to my normal (which is pretty bad anyway but a tonne better than before my surgeries)

TallVanGuy62 karma

How often did / do. you get headaches? Did they start occurring more often? I got these bad headaches for a week then got even worse one that woke me from sleep twice in a night. Then later in the week had dizziness vertigo. Doctor said it was migraines. Luckily haven’t had them since November or December.

SCP106238 karma

I got them every day, they lasted hours. I wrote hem off initially because I assumed they were just an evolution of my already diagnosed chronic migraine disorder. Turns out, nope. Chuck Tumour

And don't fret, that most likely is migraines, I used to get woken up by them too :) the headaches are gone now aside from when I sneeze. That hurts like balls due to the shunt.

Gymbawbi122 karma

Youre one badass motherfucker.

SCP106322 karma

Thank you, but look in the mirror for a sec, you probably are too, even if you don't realise it

SimplyPure90 karma

Badass and wholesome.

SCP10693 karma

<3

the_silent_redditor40 karma

Turns out, nope. Chuck Tumour

Fuckin funny.

Keep fighting the good fight!

SCP10632 karma

;)

Malachite_Wrath17 karma

Fucking lol, Chuck Tumour

SCP10636 karma

;) I was gonna write chuck Testa then realised the opportunity for a God-tier pun

ljleonard27642 karma

What does a typical treatment session consist of? Also good luck with your recovery!

SCP1061084 karma

Excellent question!

https://i.redd.it/ncq62aw6qbw01.jpg

I lay on the bed and one of the medical technicians puts my Kevlar mask on my face and clips it onto the bed to make sure my head is in the same place every session, then two X-ray panels extend from the wall and scan me, they review it to make sure I'm lined up with the beam, fit the brass plate and lucite mould into the machine, exit the room and turn it on. I hear the particle accelerator spin up and then two minutes later spin down, the entire section of the circular room rotates to get the machine into a new position, they fit a new brass plate and mould and repeat the process twice more before unclipping the mask and letting me go on the way.

This process goes on for about 45 minutes but they let you put on any music you want whether it be radio or spotfiy so that's a good way to ignore the relentless boredom every day!

JuicyJay339 karma

I guess you don't feel anything?

SCP106813 karma

Nope, rarely flashes of light because the protons are going into my visual cortex but other than that I wouldn't bkniw it was happening.

JuicyJay231 karma

Cool thanks! Good luck with the treatment.

SCP106237 karma

Thank ye

Signs80181 karma

Do you ever tell them to turn it up because you want to become immune to proton beams by slowly building resistance?

SCP106412 karma

Aha well I've heard you can build resistance to bullets by shooting yourself with low calibres and working up from there. Just hit 20mm autocannon rounds ;)

(And no, I also definitely wouldn't want to somehow become resistant even if it was possible)

Signs80150 karma

Have you ever heard about this guy

https://en.m.wikipedia.org/wiki/Anatoli_Bugorski

SCP106158 karma

Yeah I have! Unlucky guy but technically proton patients are going through a very minor version of what he did!

Aotius96 karma

What about this guy? Ever heard of this one?

https://en.m.wikipedia.org/wiki/Hulk_(comics)

Maybe cuz you’re getting lower energy particles hitting you, instead of turning massive and green you’ll just get a strange urge to work out and notice green screens are a little less effective.

Jokes aside good luck on your battle with cancer! We, the internet, believe in you and wish you a speedy recovery!

SCP10645 karma

Thank you :)

moration62 karma

The flashes of light are likely cherenkov radiation when the proton beam passes though the fluid in your eye.

SCP10671 karma

Huh, I've read about Cherenkov radiation before but didn't connect the dots with the flashes, that's a really interesting idea!

SoMuchForSubtlety57 karma

Are those flashes a bright, actinic blue? I had radiation treatment (gamma knife) for an oligodendroglioma a decade ago and wore that same mask. Every once in a while the beams would line up just right and I'd "see" the cherenkov radiation as they passed through my visual cortex. It was freaky.

SCP10642 karma

Mostly white, sometimes blue :)

marrch48 karma

What sort of music have you been picking for it?

SCP10695 karma

Indie, calm stuff. Search for the Life is Strange soundtrack on YouTube or Spotify, that sorta stuff. Keeps me relaxed and makes it easier to stay still in the relatively claustrophobic mask

EdGG25 karma

Loved that game! <3 What about podcasts? I've noticed they distract me quite a bit when I'm doing mindless stuff. Good luck and speedy recovery!!

SCP10625 karma

Ooh yeah I should ask them about that, my current favourite is Halo Conversationalists

24destinyh34 karma

Can you sing along or move your feet to the beat of the songs? I know in MRI’s you’re very limited in movement and I’d assume it’d be the same for proton therapy?

SCP10659 karma

Yeah no movement, I have to stay as still as possible because of how precise the machine has to be, anything that could slightly adjust my head is a no-no

hungryhungryhippooo22 karma

What happens if you move in the middle? Do they just have to redo that session? Or does it have adverse effects on the non-targeted areas?

SCP10636 karma

They'd have to redo it, luckily each treatment session is done in three stages so the dose to the wrong area is minimal

lotusblossom60508 karma

Are you going to live? Do you have headaches? What was your first symptoms?

SCP106885 karma

Most likely going to live, it's grade three out of four into terms of severity, meaning it's malignant but luckily it's very slow growing, and takes over blood vessels but doesn't generally harm other types of cell or cause many other problems other than pressute issues. They have an 80% regrowth rate from full removal though so like most cancers I'll never be free of it but hopefully I'll be able to live a mostly normal life :)

I have headaches from the shunt, it's slower than the organic method of drainage so when I cough or sneeze it hurts like hell but nowadays no tumour related headaches.

My first symptoms were horrendous migraines concentrated at the base of my skull and temples as well as severe vision problems like vision loss, dizziness and bad brain fog/fatigue. This lowered then disappeared with my first and second craniotomies :)

Ironandsteel249 karma

My dad had his brain tumour removed last year that was the size of a plum. No real side effects so far. Wish you the best !

SCP106247 karma

Dayum, at least it didn't have a hard core! Good luck to him and thank you!

anotheredditors47 karma

Wishes you the best of luck in your treatment. Hope you will get well soon:)

SCP10655 karma

Thank you :)

lotusblossom60157 karma

Wow. Good luck with your treatment and try not to sneeze!

SCP106228 karma

Ahahaha thanks, hopefully it goes well and yeah, it's damn painful and for some reason ever since I swear I've sneezed more in the two months since than I have across the rest of my life combined! Universe likes playing tricks on me

snow-ninja48 karma

Next time I get a cold, I'm going to think of you and stop being such a little bitch about it.

When you feel a sneeze coming on try pressing your tongue as hard as you can into the roof of your mouth. Works quite well for me. I've also found that firmly pressing the base of the middle of my nose, pushing into my upper gum from the outside can help too. Whatever you do, don't look at the sun or a bright light! 100% will make you sneeze when you're 'ahh-ahh'ing.

Best of luck with your teleportation training!

SCP10616 karma

Thank you for the tips! And I will master it by 25

IsReadingIt56 karma

Nothing to add other than best of luck. Your outlook on the whole thing is extremely positive. Keep fighting the good fight.

SCP10652 karma

Thank you! I shall.

Yossi25193 karma

Is it the white area in the middle of your brain, or the buldge out area at the top?

SCP106281 karma

Both, it sorta sloped down the side of the brain and pushed inwards, the other side it was much deeper, as well as the fact it straddled both hemispheres. Apparently I had about three tennis balls of mass on top of the brains and if it had been caught a week later I could have gone blind or died due to the massive pressure and blood flow issues it was causing.

EmperorKira166 karma

3 tennis balls? Holy shit

SCP106225 karma

I was only told that afterwards, was pretty much my reaction too mate

Yossi2561 karma

I'm sorry you're going through that. One thing I've learned is, having anxiety is the worst part of having a chronic illness.

I don't quite know the right way to word that. But just taking one day at a time and having faith in something is good.

SCP106147 karma

Oh definitely, luckily I've spent my life with chronic pain and a physical disability that has a lot of mental ramifications so by the time I found out about it it was a little easier, because it was just another shit and painful thing to deal with rather than something terrifying, even if I feel that way sometimes.

The anxiety is bad, especially since this disease is a dark cloud that hangs over you, even moreso when you know it's in your brain and is threatening everything that makes you, you. But, as I said, just another thing in my medical trainwreck of a file to get through, and it most likely won't kill me yet so that's certainly something to be happy about.

I've found the one day at a time thing to be a good strategy, never looking too far forward and making sure the present is the best it can be

InternetIsWow41 karma

Sorry to hear about the cards you’ve been dealt. I lost my mom to a very rare form of cancer a couple years ago, and I can’t imagine what it must feel like for you. It sounds like you’ve got some great doctors taking care of you. Keep fighting and try to stay positive, your willpower can be a major X factor. You got this!

SCP10645 karma

Thanks mate, I'm sorry to hear about your mum :( luckily the doctors are both excellent in training and in general, hear at the proton centre they're so understanding and hold weekly get-togethers for the patients and a doctor always does a presentation on their research area/speciality. It's a great way to know that there are others in the same situation, even if they don't have the same type of the disease they know what it's like

aris_778 karma

So sorry to hear about your situation. You mentioned anxiety, does the medical staff provide you with any sedatives to make you feel more comfortable and at ease during therapy?

SCP10635 karma

They can and will if you move around a lot/get claustrophobic but I'm good at laying still, the anxiety is more existential due to the fact of having brain cancer. I have minutes whether it's gonna show up anywhere else and it's always scary hearing scan results as well as it being like a constant dark cloud hanging over you, as well as worry about the long term negative impacts of the radiation

aris_7713 karma

Wow. I personally don't know how I'd cope, you're extremely brave! If its not too much to ask, I also would like to ask whether you were awake during craniotomy? How long did the surgery take to remove the tumor?

SCP10618 karma

Definitely not awake, the surgery took about six hours for both times, give or take half an hour!

lockd0wn176 karma

So they use protons to kill the tumor cells. Does the body naturally remove the cells or does there need to be a follow up surgery to remove them?

SCP106177 karma

Hopefully the body should just naturally absorb them like any dead cells but I'm not sure on this part, don't know much about it

orionsgreatsky150 karma

Good luck! I was also very sick as a teenager (13 doctors and 3.5 years to get diagnosed with a rare form of MD). I found it very difficult to relate to my peers and form friendships. I developed PTSD from medical trauma and still struggle with anxiety (I’m 23 now).

My questions are do you have a support system? How do you manage your anxiety? What do you want to be when you grow up?

Also just wanted to say it gets better. When I was diagnosed two months before I turned 16, I thought my life was over. Now I’m 23 and just graduated college last year with my degree in mathematics. I work in a Fortune 100 now and I know my health experiences gave me the perspective and work ethic to succeed. Wishing you the very best and if you want more advice, feel free to PM me! :)

SCP106123 karma

Thank you for the kind words and advice! I have a psychotherapist that specialises in teens with cancer so she's very useful. I mostly manage my anxiety by doing things with my best mate because he's sort of an anchor, someone I can rely on and know can help in strange or new situations as well as a reliable confidant.

needmorexanax144 karma

Are you in a lot of pain most of the time?

SCP106224 karma

Luckily, no. It's fully intercranial meaning that since it's not incredibly large like it used to be I can't feel the mild pressure it puts on my thinking meat slab, and it's been a few months since surgery so that pain is mostly gone too. If it were elsewhere there'd be a lot more organs for it to push on and a lot more damage to be done to perhaps more sensitive parts so it'd probably hurt more then.

I do have a physical disability that basically amounts to arthritis everywhere as well as ultra flexible joints and vey weak tissue, so any movement is painful, and being in a hospital bed for months made it much worse due to muscle wastage but that's easing up a bit as I get steadily more active again. Worst part was the serious weight gain from the steroids I was on, at 8x the standard dosage it made me put on the pounds so quickly

TheRavioligarchy71 karma

Do you have Ehlers-Danlos? I don’t know too much about it but it kinda sounds like the hyperflexibility type

SCP10692 karma

Indeed I do, it's technically Hypermobility Spectrum Disorder but that's a new designation because nowadays physicians are moving away from EDS III and have started using that instead to separate it from EDS vascular and classical.

AeonThoth144 karma

This is a personal question: do you see a future in quantum physics and neuroscience around the corner? Also, is it like a straight beam of protons attacking the tumor?

SCP106138 karma

Yeah constant beam :)

Perhaps, but sadly I don't have the qualifications to get into uni for physics related stuff so I won't be getting into it yet at least

shahob92 karma

Can you feel the tumor constantly or do you forget it's there sometimes?

SCP106195 karma

Don't feel it at all anymore! Fully inside the skull and the body doesn't really feel anything in there, only time you can is when the pressure gets bad enough to start affecting the brain stem/upper neck, jaw, temples and eyes. Hopefully it won't get to that stage again now I'll be having three monthly checkups and six monthly scans to look for anything!

I can always feel the shunt/valve, it clicks and whirs a lot as well as I feel the drained fluid slosh in my abdomen from time to time as well. It's gross but better than being dead.

jessesewell42 karma

Wait, how does it drain to your abdomen??

SCP10672 karma

Thin tube runs from along my skull into my neck, over my ribcage and into the peritoneal cavity :)

jessesewell49 karma

Wtf that's insane, you're a robot

SCP106127 karma

beep, boop SHIT THEY'VE GOT ME

allonzy15 karma

I'm going to the hospital tomorrow and may be getting a shunt soon. How quickly did you feel better after getting it in? I've been scared to get mine because my friend died from an infected shunt, but I'm getting to the point where I may finally go for it. Or I may be getting to the point that, like you said, it's shunt or die. In which case I'll for sure do it.

Did you have any trouble with hormone regulation pre shunt? Any trouble breathing?

Edit: well look at that, we both have EDS too! Glad I saw your awesome AMA!

SCP10613 karma

I felt better almost immediately, it was such a relief and the only inconvenience was the pain from the cut in the abdomen! No hormone issues from the shunt I don't think, wouldn't be able to tell though I was on a huge steroid dose that was wrecking my hormones anyway. No issues breathing other than my asthma

rogert286 karma

If the proton beam gives you super powers, will you swear to use them only for good and not evil?

Get well soon. :)

SCP10697 karma

I'll think about it ;)

uvatbc42 karma

It would be so cool if you suddenly start breaking the fourth wall.

SCP10660 karma

And perhaps wearing a red suit of some sort

PedroLight77 karma

How do proton beams work?

SCP106197 karma

Ooh good question, well I'm no scientist so don't expect this to be too accurate but firstly hydrogen is "spun up" in a large cyclotron and then the particles are shot into my head via a huge tube ringed by powerful magnets, a brass plate is custom made for the machine that had bits drilled out is fitted to the open end of the accelerator.

This plate has holes cut into it to allow protons through and is combined with a lucite disc of the same size with a 3d indentation in it to lower/raise the dosage to parts of the brain via the varying thicknesses on it.

Proton therapy is much more preferable than radiotherapy because it has a much smaller dose to surrounding healthy tissue, and depth can be controlled, meanwhile X-rays from normal radiotherapy go straight through, meaning that if it has to be treated from the top of the brain then pretty much everything from your heart to your balls is getting irradiated and increasing the chance of secondary tumours popping up

Meaning, if you can control the depth you can make it much safer. Still with debilitating side effects, hair loss and cognitive problems but a hell of a lot safer

PaulProteuswasframed119 karma

Pretty good explanation. I work as a physicist at a proton treatment center but I can say confidently not at the center you are at. I wish you the best of luck in your recovery. Bravo to you on having the bravery to do an AMA on this topic.

SCP10675 karma

Ooh thank you! I didn't think I was that accurate at all haha. Thank you for the good work you do, people like you are literally saving my life!

I don't really think it's bravery more of a way to get it out there and a bit more awareness of certain brain tumours and this therapy, because most just think of chemo and radio :)

ChromeCadet50 karma

I was given the opportunity to work an internship with a proton therapy center not too long ago. This is an accurate layman's description (which is honestly the most I'd be able to provide myself). It's really neat to hear from a patient's perspective, and I'm glad things are going fairly well thus far. How far along into treatment are you?

SCP10644 karma

Two days, 31 sessions to go!

PedroLight3 karma

Pretty cool, but looks expensive

SCP10660 karma

£140,000,000 per facility, luckily I was sent to the US for treatment by the NHS for free (for me at least) with all living expenses paid as well as medical insurance/coverage by the hospital treating me whilst I'm out here!

durx118 karma

christ, that must be nice

SCP10619 karma

Yup, I'm so grateful for it

AgzerYT65 karma

Was this birth related or an injury?

SCP10688 karma

No clue, definitely not injury, it's not known whether it's been with me since birth/is genetic because I've never had any scans previously to show anything up, and it's difficult to judge based on size because it's such a rare type there's no detailed information on it.

AgzerYT29 karma

Oh cool! Sorry for you know

SCP10683 karma

Aha it's fine :) ehh don't worry we all deal with problems in life, some people get stubbed toes or colds, I just happened to get brain cancer, no biggie ;D

SCP10643 karma

Not sure about birth related, could have been with me for life, or could have been growing for just a few years, this type is rare (66 cases since 1941) so there isn't much info on it that would/could shed light on it's age based on size.

The hydrocephalus is injury, the ventricles inside the brain that usually keep fluid levels in check were practically destroyed during the surgeries and so my intercranial pressure rose rapidly, and I developed a pseudomeningocoele from fluid leaking out of my damaged skull into my scalp and causing my head to balloon in size, requiring the shunt to drain it into my abdominal cavity.

GaLi_iLaG16 karma

Heh.. shed light on it..

SCP10614 karma

;)

MusteredCourage58 karma

What happens when they create a black hole in your brain?

SCP106137 karma

I become one with the universe

MusteredCourage42 karma

Maybe it's SCP-106's origin story

SCP10642 karma

Aw shit the protons are gonna make me all rotten and old? Well at least I could walk through walls!

grrb8820 karma

You’re literally the cutest.

SCP10649 karma

<3 stop you're making the tumour blush!

razorbackgeek51 karma

I hope you beat cancers ass. If you do get a face like an avocado had sex with a topographical map of Utah, will you come kick the living shit out of some people for me?

SCP10631 karma

Oh it would be my pleasure

flamants51 karma

What kind? My best guess would be meningioma but you said it's extremely rare?

SCP10695 karma

Haemangiopericytoma, it acts just like a meningioma but is basically packed full of blood vessels as well as being malignant most of the time. Lost 5L of blood in surgery due to it's unique composition

flamants43 karma

Jesus christ. How many units did they have to transfuse? Do you know if they're going to do a case report or something?

SCP10661 karma

I don't remember the amount of units, nor whether they'll do a report, but I'll ask when I'm back in England and at a follow-up! :) I'm pretty sure I may have some studies done on me/my tumour due to the extreme rarity and the fact I'm so young, average age is 60!

flamants47 karma

Yeah, I noticed it wasn't even a pediatric brain tumor, which makes it especially weird. If you didn't know, 5 liters is the average amount of blood that is in the human body at any given time. If you lost that much they must have had to do some crazy intensive replacement.

Where are you currently and why do you go to England for treatment/follow-up, if you don't mind me asking?

SCP10667 karma

I was told that it was really bloody hard keeping me alive and for the surgeon to continue working whilst I lost that much blood, but they were prepared for it because I lost two units in my previous craniotomy.

I live in England, the proton centre in London is still under construction so I was sent to Jacksonville by the NHS with them paying for accomodation and insurance whilst I'm out here!

flamants36 karma

Jacksonville like in Florida? That's cool that you get a free trip to the US out of all of this! (Not that it makes all the other parts worth it or anything...)

There's actually a proton center still under construction in my city too, not far from Jacksonville, though it's been stalled for a while. I just looked it up and it looks like they'll start taking patients this fall, it's cool to have a real world (albeit online) glimpse into the kind of patients it'll be serving!

SCP10662 karma

Yeah it's a radiation vacation! It's a 10 week holiday haha

I'm happy to give you that glimpse :)

mcewern16 karma

As an ICU nurse, I say> Yikes. ((Healing vibes!))

SCP10612 karma

I think that's what my surgeon thought too!

malik00251 karma

Hey what’s your age and what do you do? Just wondering on how you’re going through it.

SCP106134 karma

17, was in school, but obviously haven't been able to do any of that recently haha. It's difficult being so detached from my previous life but everyone has to deal with hardships at some point, and there are people with more aggressive cancers out there so it keeps me grounded from spiralling regarding bad thoughts

Miserere_Mei43 karma

I have a friend that is doing the proton therapy and posted a picture of himself wearing the mask. I am super claustrophobic, so it looked very scary to me. How is it being in it? Praying for your recovery!

SCP10675 karma

https://i.redd.it/1hivoh8recw01.png

The mask is somewhat claustrophobic but the worst part is the mouthpiece, it hurts my teeth and bends them a little, especially considering I have to bite down for 45 minutes and the fact I have temporomandibular joint disorder so it wrecks my jaw joints

Sombre-Alfonce24 karma

This is really interesting actually. I'm assuming it's a customised mouth bung under the mask. I'm training to work in radiotherapy in Australia, and we tend to cut out a hole in the mask for the bung to prevent discomfort. I've never seen a bung beneath the mask. Even in stereo treatments the mask doesn't cover the mouth.

Similarly, we only cut eye holes if the patient has an issue with claustrophobia, as the brow ridge is one of the best and most stable places to mould the mask to the face. Edit: Although if your treatment is 45 minutes long, I can understand why they would cut the eye holes, most of the treatments we deal with aren't longer than 20.

Wishing you the best man. As we all tend to say to patients on treatment, we all hope to see you around, but not back in the treatment bunker.

SCP10621 karma

It's like a mould of my teeth to keep my jaw and skull in the right place, attached to the mask :) it's the two horn like things poking out at my mouthular region on the pic :)

Sombre-Alfonce14 karma

Oh so it's attached! That's got to be interesting to put on!

Yep sounds like it's more of a jaw stabilisation tool from your description. 'Mouth bung' might just be an Australian term, but they're also used to depress the tongue into the lower mouth (and hence away from the brain). This makes it easier to avoid dosing it with radiation during treatment.

SCP10614 karma

Nah we call it a bung in the UK too don't worry mate. And yes it's difficult to get on, trust me!

DrZack36 karma

Thanks so much for doing this!

What aspects of your care did you like the most? Where there any interactions you've had with your physicians that you found especially meaningful? Asking because I want to know ways I can improve my own patient care.

SCP10640 karma

Well, I especially liked it when my team members got "personal" / were friendly and conversational, not just being rigid and a bit mechanical, offering advice or being realistic about things. As well as jokes, lots of em! :D

Also, when they remember and take into account small details I mention, I've found that improved my situation a lot when recovering from surgery

Sorry if this wasn't that helpful of an answer but it's hard to think of something right now haha

DrZack9 karma

Haha no worries! I'm just interested in getting many perspectives...if you think of anything more let me know!

SCP10610 karma

I shall, Dr Zack! If you don't mind me asking, what field and specific area do you work in?

DrZack17 karma

Third year medical student in the states. Considering neurosurgery....always interested in learning more from a patient's perspective

SCP10612 karma

Ah alright, yeah go for it! I've heard it's one of the most interesting areas in medicine, and especially in recent years many previously impossible things are being achieved :D

Salma7536 karma

@SCP106 , If the treatment is successful, do you think the foundation will lower your classification to Euclid?

Best of wishes by the way <3

SCP10628 karma

Hopefully, god damn! I'm not dangerous, per se, just misunderstood!

Angrysliceofpizza26 karma

In all seriousness how much of your intelligence well remain intact?

SCP10640 karma

Most of it, probably, radiotherapy in all of it's forms can damage or even destroy previously healthy tissue and that may cause issues with my intellect or general function. It's risky but is better than being dead!

Frankly it scares me but I know it isn't usually too much of an issue, and usually becomes a problem many years down the line

showtimesynergy23 karma

How was your recovery from the craniotomy? I might have one over the summer and I’m scared because I don’t know what to expect. Mine would be to remove an AVM in the ventricular system.

SCP10629 karma

The recovery was relatively quick, was discharged from hospital within a week and a week after that the staples were taken out a few days after that. As long as you're very careful with not touching the scabbing and being vigilant looking for signs of infection then you'll be fine, the rates of bad shit happening are very small and I've had two without many problems. Just be careful about sleeping lying down, I recommend propping yourself up and please avoid sneezing or coughing after the surgery because Jesus it's painful

matt_the_mediocre20 karma

3 questions if you have the time or inclination to answer.

  1. Has this encouraged you to change your future goals in any manner? (Different career, hobbies, paths)

  2. How can you turn this to help people you down your path, be it the original plan or a new plan.

  3. How can we, the Reddit masses, help you to get where you want to go?

Thank you. -Matt

SCP10627 karma

Trust me I have the time, it's 23:30 but I'm still trying to reply to every single top level comment I can!

  1. It's made me consider different options/routes in education, but I'm not letting it sway me from the path I want to go down of some tech development job in future.

  2. Once I'm fit enough I'm going to try my best to raise funds for various brain cancer charities as well as offer myself up for various studies because I'm sure there's a lot of scientists that want to study my case, considering how rare it is!

  3. By being courteous, and kind, really. I don't know, and I don't want people's money so nothing like donatios! I just really appreciate people being so interested and wishing me good luck

Jstone3915 karma

What does brain fog entail/feel like?

SCP10624 karma

Not being able to remember words/what you were talking about in the middle of a sentence, always half-remembering stuff without full grasping what it is, constant confusion and sort of emotional vagueness. I still get it but that's because it's also a problem caused by my Hypermobility Spectrum Disorder/EDS III

Mememan69696911 karma

When you heard you were using proton beam therapy did you know about it before? If you didn’t did it sound like a device from sci-fi?

SCP10619 karma

Didn't know about it and yeah it sounded super futuristic, now I've seen the machine I think that tenfold, you can't see it in the picture but the emitter looks like a goddamn cannon barrel, it's about half a meter across!

aalevelthree11 karma

What kind of brain cancer?

SCP10625 karma

Haemangiopericytoma grade 3/solitary fibrous tumour, very vascular, loves to metastasise to the bones and or lungs, masquerades as a meningioma early on leading to misdiagnosis! Overall a lovely type of tumour/cancer

TehSteak8 karma

If I took that mask off, would you die?

SCP10616 karma

It would be extremely painful

SoberApok4 karma

I don't mean this as offensive, but do you ever wonder 'is this really worth it?'

I worked as an EMT for over 5 years, and saw people with horrible, degenerative diseases that spend months/years and all their money and their family's money, fighting for a very decreased quality of life or a very shortened life span.

I've personally decided if anything like that happens to me, I will let nature take it's course.

Have you ever considered that maybe.....this isn't something meant to be fought? If so, why? If not, why not?

SCP10626 karma

Hmm, good question!

To be honest, yes I have thought that, when dealing with the awful drugs, the horrendously painful recoveries, and especially that one time the cyst full of spinal fluid that encompassed my whole head burst in an MRI ( Google pseudomeningocoele) and I had it sewn up without anaesthetic to stem the flow,.

But, I know I can get through this, and I have family members and friends who care about me who I wouldn't want to be hurt by my death, especially at such a young age. I know I have alright chances of getting a significant amount of extra years compared to if it was left alone (when diagnosed apparently within a few weeks I would have died from the extreme pressure on my brain)

And also, by fighting it, it's another fuck you to the multitude of medical problems I've had. None of them have beaten me yet and Ii'm not letting something as trivial as a rare type of brain cancer do it either. I haven't had a proper life yet, this sorta shit isn't meant to happen to me and so I'm gonna fight it off to actually try to get somewhere, to enjoy what I have instead of dying sick in a bed somewhere and being added to some statistic and leaving a family behind.

SoberApok5 karma

Hey, thanks so much for the reply. And I really hope it didn't come across as insensitive. I had very different views on medicine and life in general after working half a decade on an ambulance. And if you look at the thread, there's a guy that seems to be thinking I was being heartless, and I wasn't.

I was curious about your thought process, and I'm impressed by it. I like the 'fuck you' attitude, but I like that you seem to have given it honest thought.

I believe life is about LIVING, about making each day great, about making people you meet have a smile on their faces when they think of you. I don't think it's about just 'taking your next breath.'

So give that cancer hell dude, and I'm hoping the best for an awesome recovery!

SCP1068 karma

Well thank you for the well thought out and honest question! And no, you're not being heartless you were being curious and asking a question that requires a lot of consideration.

And when I'm done kicking this tumour's arse imma throw a massive fancy dress party and I'll use that as an excuse to incorporate that cool but vaguely terrifying Kevlar mask into an outfit.

Zahn_Romusiae3 karma

What kind of music would you listen to during the procedure, if any? I've only dealt with MRIs, and the music was the only thing keeping me sane in there. Very curious about how you handled it.

Best of luck!

SCP1068 karma

Huh you're lucky to have gotten music in your MRI's :) I just got the horrendous deafening BWEEN BWEEM BWEEM things haha. I've been going for calm indie stuff, think Life is Strange's soundtrack kinda stuff, helps me stay still and relax

Pablosamo2 karma

Symptoms before diagnosis?

My head hurts almost 24/7, always has been chronic, but last month has been non stop; getting a bit paranoid here.

SCP1064 karma

I had debilitating headaches concentrated in the base of my skull, jaw joints and temples as well as vision loss and dizziness + brain fog and memory problems

Talk to your doctor, try to get an MRI schedule if you're worried, it's always worth checking just in case, even if it's not a physical problem you may be prescribed medicine to help?

Cafe_link1 karma

What was the reasoning for doing proton instead of carbon? I believe japan has a facility for carbon therapy.

SCP1061 karma

Never heard of carbon therapy! I'm guessing it's because proton therapy is already well established and the NHS has a partnership with Jacksonville and Essen to send patients there for treatment so the legal infrastructure is already there.

boyzmama1 karma

Are you in San Diego? My sister in law works at cancer Treatment center in SD. I wish you strength and the power to love yourself no matter what! I've been living with a disease for 24 years. The Drs said I wouldn't walk again. Haha I showed them! My MOTTO is #nevergiveupneverquit

SCP1062 karma

Nah, Jacksonville, FL and only temporarily :(

You show that disease what you're made of! And I agree. Mine is "Know your enemy" because so many people I know have buried their heads in the sand then didn't know what to do when things went wrong.

Pukalo_Reincarnate1 karma

What is your favourite Toy Story movie?

SCP1063 karma

3, the feels man, the feels

ChezRoxwell0 karma

What kind of teen? Male Or females?

SCP1062 karma

Male :)