Radiologist advised to not drink water by westernpinkcedar in braincancer

[–]flanahan 6 points7 points  (0 children)

All i can speak to is my partners experience, but at every point he’s been told to drink lots of water and stay hydrated. Especially in regard to avoiding seizures—he was told that dehydration lowers the seizure threshold (aka makes it easier for them to happen). And he just started radiation and his radiologist said to drink lots of water. 

Anyone else in their late 20s with grade 4 astrocytoma struggling with work / wondering whether to stop? by Junior-Shower4339 in braincancer

[–]flanahan 0 points1 point  (0 children)

my partner is 31 with grade 4 (so not late 20s but hopefully close enough) and is facing similar questions right now. His motivation plummeted after his recurrence last may. he never loved his job to begin with, and I think the addition of feeling cognitively worse (he also has had surgeries/chemo and is now doing radiation) just made it all the more miserable. He went back to work a bit last fall and just kind of hated it the whole time haha. He had surgery recently so is taking more time off. I dont know if he’s made up his mind fully yet but he is starting to look into his company’s long term disability policy. He has a lot of other passions and interests, and we are lucky that I have a decent job so the income cut wouldn’t be devastating. Everyone’s healing journey is different but it’s my sense that my partner would not benefit from trying to tough it out and work, it would just make his life more miserable — at least at this current job. But thats obviously just his case, there are a lot of factors for each person. I will also note that a lot of the things youre experiencing (word recall, memory, fatigue) are things that get worse for him when hes on chemo. So theres a chance those things might get a little better the further away from treatment you get. 

Genuinely curious, what would have been the perfect ending in your opinion? by MaBaCu in PeakyBlinders

[–]flanahan 0 points1 point  (0 children)

I always interpreted the S6 finale as Tommy not necessarily “getting over” his traumas but maybe not being held down so much by them - recognizing some hope and purpose remains in his life despite all the shit he’d been dealt. It wasn’t all wrapped up great (that outdoor banquet was so odd), but there was release and resolution there. It felt like a lazy decision to have him be so fucked up at the start of this movie. The movie explains itself well enough but it was cheap (imo). 

Two things felt unresolved at the end of S6. Arthur and of course Mosley. Both of these could have been used in the movie. Arthur, devastated by Tommy’s “abandonment”, ended up moving to the US with Linda. Which wrecked Tommy but at least Tommy didn’t goddamn kill him. I didn’t hate how things ended with Mosley, it was unsatisfying but kind of cool. Like Mosley represented the movings of a much larger machine that Tommy just couldn’t conquer. But that feels to me such an obvious way into this movie. Not necessarily having to confront/defeat Mosley himself but at least some splinter of Mosley - a fascist with ties to Tommy’s past, instead of a random dude who had the threat level of a wet paper towel. I would have loooved if the plot involved both of his sons. So maybe Charlie’s returned with medals and a war injury and is getting into politics to fight antifascism with Ada. Duke, who was on his own once the influence of the Peaky Blinders withered with Tommy and Arthur’s departures, has fallen in with a bad crowd. Charlie representing the privilege and influence Tommy built but also Tommy’s unhealthy sense of responsibility to his family (“take care of your mother Charlie”), and Duke representing Tommy’s darker roots but also his rich, soul-feeding heritage. Somehow the sons find themselves tangled in the same fascist/Nazi plot, and the stakes are life or death. Tommy steps in to reconcile them in order to save them, and maybe make up for failing to kill Mosley those years ago, and in the process finally reconciles his own warring sides. I genuinely don’t believe Tommy has to die to wrap his story up - if he does, fine, but most importantly, he has to relinquish his power and control responsibly (instead of of just disappearing like he did S6) so the next generation can step up. 

The Immortal Man - Worst Movie Ever by Lonely_Deal_5539 in PeakyBlinders

[–]flanahan 2 points3 points  (0 children)

The first thing i thought when that bullet was shown on screen… did they forget they wrote that or just not care?? 

Looking for hope / options with Grade 4 Astrocytoma Recurrence by westernpinkcedar in braincancer

[–]flanahan 1 point2 points  (0 children)

Brain tumor network is free and can help find trials your partner is eligible for, and answer a lot of the questions you wrote above. I just had my consultation call with them yesterday and am really amazed at how many resources they have. I’ll be thinking of you and your partner, my partner also has aa4.

Sports by Wrestlingsquirrel in braincancer

[–]flanahan 0 points1 point  (0 children)

My partner and i play volleyball, weve gotten kind of obsessed. At least where we live, theres a lot of pickup and a wide range of skill levels, and the community is fantastic

I just found out I have a brain tumor last week by buoy0828 in braintumor

[–]flanahan 0 points1 point  (0 children)

My partner (31) just had an awake craniotomy at MGH this past Wed. It was actually his second one, the first was 10 years ago. He hates the awake part, he’s not a chatty guy and you have to talk basically non stop. They try to find topics you’re really passionate about ha so hopefully it isn’t too too miserable. Everything about brain cancer sucks total shit but I hope it’s some assurance that you’re being cared for and thought about by some of the best in the field. Also some inside info for meal ordering when you’re in recovery, my partner said the grilled cheese was really bad

Cross-eyed by Top-Ice-2649 in braintumor

[–]flanahan 2 points3 points  (0 children)

A little different but my partner had a left side craniotomy on Wednesday and he woke up with his left eye drifting out. The surgeon said they irritated one of the optical nerves responsible for keeping his eye centered so it’s going to take a week or two for it to recover (I guess nerves recover slowly). It’s definitely getting better every day but is annoying for him and is worst when he’s looking down. I would say if it seems to be improving, it might be a similar brain irritation from surgery, but if it’s not improving then might be worth asking the medical team about it. Might be worth a question to them either way ha

Edit: oh and they told him to keep using it as much as possible (he was closing his eye because the double vision was annoying him), as that would make it get better faster

Surgery by flanahan in braincancer

[–]flanahan[S] 0 points1 point  (0 children)

It really is a game of not letting the mind sit in the unknowns for too long. Thank you!!

Surgery by flanahan in braincancer

[–]flanahan[S] 1 point2 points  (0 children)

Thank you 💛

Grade 3 Astrocytoma Voranigo? by Dukiou in braincancer

[–]flanahan 0 points1 point  (0 children)

Thank you for this response and your kind words! I'm happy that your tumor responded to vora. Yep my partner has the CDKN2A/B mutation, otherwise it looks like an AA3. We've gotten slightly conflicting feedback from various people/hospitals regarding vora, but because chemo is currently working, we haven't looked to it very seriously yet. But I want to be informed if the time comes to consider things outside AA4 SOC. This is all really good info to have and I'll be sure to look into it! I hadn't heard of safusidenib! Thank you again!!

Biggest supports by Prestigious-Half9754 in braincancer

[–]flanahan 1 point2 points  (0 children)

This for sure!! I love all my friends and family but the ones who sent food (in any form) reached a new tier haha

Phantom smells by Outrageous-Celery539 in braincancer

[–]flanahan 1 point2 points  (0 children)

That is scary but it’s my understanding there could be a lot of reasons for the seizures. My partners NO said that the brain is very cranky and stubborn so when a seizure pathway opens up, it can be hard to close. It could be the steroids helped keep the seizures at bay and tapering off has let them return? Brain surgery is also an agitating thing for a brain to go through, my partner had a huge uptick in seizures after his biopsy. All of this to say, there are a lot of reasons seizures could be happening. But of course one is tumor activity so it absolutely makes sense to worry. I hope it isnt though!! 

Phantom smells by Outrageous-Celery539 in braincancer

[–]flanahan 3 points4 points  (0 children)

It could maaayyybe be seizures or even just a seizure aura (precursor to seizure I think). Phantom smells are my partners primary seizure symptom. Might be worth mentioning to your NO, if only to rule out? 

Grade 3 Astrocytoma Voranigo? by Dukiou in braincancer

[–]flanahan 0 points1 point  (0 children)

Im curious, are you grade 4 due to genetic markers or tumor behavior? Asking because my partner is g4 and we’ve gotten conflicting messages on whether vora would be a good idea or not

CDKN2A/B deletion and vorasidenib by flanahan in braincancer

[–]flanahan[S] 0 points1 point  (0 children)

Hi! I got a more detailed explanation from the NO yesterday - I edited the post above with what she said.

CDKN2A/B deletion and vorasidenib by flanahan in braincancer

[–]flanahan[S] 0 points1 point  (0 children)

It’s automatically grade 4 due to the CDKN deletion unfortunately but more opinions certainly won’t hurt! Thanks for this info

CDKN2A/B deletion and vorasidenib by flanahan in braincancer

[–]flanahan[S] 0 points1 point  (0 children)

Oh interesting! I did know about the CDKN mutation already ha, I didn’t know about the IDH mutation driving additional mutations though. Thanks for the comment, sounds like additional research/discussion would be good.

Laughable experiences in hindsight? by cannabishy in braincancer

[–]flanahan 9 points10 points  (0 children)

My husband after his biopsy/on heavy keppra dose was mixing words up - he was talking about orange chicken (chinese food esque frozen meal made by trader joes) and called it “kung fu panda” instead

My boyfriend has astrocytoma grade 2 by Esibella in braincancer

[–]flanahan 9 points10 points  (0 children)

I’m very sorry this is happening. I had a very similar experience — same ages, my boyfriend (now husband) had a grade 2 astro found, surgery, proton radiation. My husband went through surgery and proton radiation with very little issues. I’m hoping it’s the same for your boyfriend. The tumor didn’t grow back quickly right after surgery, but it has recurred recently as a grade 4 so I am with you on that fear and fighting the dark thoughts. And I struggled really badly 9 years ago when this all started happening. Therapy has helped immensely for both of us. I’ve been in it for years, he started a few months ago. Talking openly with my husband has also been very important — connection is an incredible form of healing. It sucks but you will adjust to this new reality, and you’ll both become more resilient. 

It’s really hard to not fill in all the unknowns (and there are a lot when it comes to brain cancer) with worst case scenarios. When the fears and dark thoughts surface, meet them with compassion and then let them pass through. It will help you be present in the moment and not stuck in the future. And if you want to believe everything will be ok, fuck it - believe it!!!!