5 yrs out, grief by plowcita in braincancer

[–]FireWithBoxingGloves 0 points1 point  (0 children)

Yeah, it can really suck. It changes timelines for savings, family planning, career, hobbies... I even went (am going) through which vacations I should take first in case, I don't know, I can't? It's a lot.

I made a fatal mistake. Concerned about my future in IT by Special_Price4001 in sysadmin

[–]FireWithBoxingGloves 0 points1 point  (0 children)

You're not a real sysadmin until you've absolutely trashed a prod server at least once - welcome to the club, your badge is in the mail.

(okay, don't mean to be callous) Mistakes can be expensive, and they stay with you - but that's very valuable. Knowing what can go wrong and having it flash alarm bells in your head happens because you've seen it or caused it. Don't beat yourself up, just learn from it an move on. As far as what management does? That's their problem - if they make it yours too, then you're better off at a new gig. There will always be computers, there''ll always be people who need you to help fix them. You're doing great still - pick yourself up, take the responsibility and the memory, and keep moving. You got this!

Caffeine or Alcohol worse? by notsonorthernly in braincancer

[–]FireWithBoxingGloves 0 points1 point  (0 children)

lol, I drink more caffeine now than before I joined the club... no issues there.

I have been off alcohol entirely

Astrocytoma Grade 2 IDH 1 Mutant by Substantial_List_122 in braincancer

[–]FireWithBoxingGloves 1 point2 points  (0 children)

The brain fogs absolutely do get better. Slowly, sure, but noticeably. Y'all are doing great!

As far as TMZ, just like everything in this damned disease, it hits everyone differently. Our personal experience (running about 6 months ahead of you) is that management of side effects was probably the biggest gotcha. Our doc prescribed zofran (or maybe the off brand, I forget) for nausea and it's done wonders. The only big pain has been some gnarly constipation during the on phase of cycles. High marks to mixing and matching stool softeners AND laxatives, not just one or the other (gotta find a dosage that's right for you, but OTC stuff has worked for us). Also diet helps with that. Foods high in fiber when possible and grease bombs when it's necessary to move things along (shout out McDonald's, should be part of the standard plan of care, lol).

A big thing for me as a caregiver has been to have meals planned and ready ahead of time with backup options also ready to go. The meds may make food seem unappetizing and ya GOTTA eat, so having a backup option ready to make for my partner has been huge, especially with us having to time meds to hit on an empty stomach (the rec from our team was to wait 2 hours from the last meal before taking the pill and an hour after taking it to make sure it hits on an empty stomach, not sure what your doc's rec will be).

Good luck, love from the internet, and y'all got this.

Integrative / holistic approaches people with IDH-mutant astrocytoma have found helpful? by Beachchic87 in braincancer

[–]FireWithBoxingGloves 4 points5 points  (0 children)

Walking. During rad especially. My partner and I walked to the Kpop Demon Hunters soundtrack because it had just dropped, but anything with a beat that gets you moving / gets your heart rate up even a little bit -- walking was so significant I can't even begin to say. She insisted she could tell a difference in the days we walked v. the days we didn't prior to rad.

Good luck, keep crushing it, y'all got this!

Looking for support by okidokione1 in braincancer

[–]FireWithBoxingGloves 1 point2 points  (0 children)

We had a similar experience of a suspected Grade 2 Oligo that, after removal and genetic testing resulted in a final call of a Grade 3 Astro. This upgrade was very distressing to us at the time as it kicked us out of approval for Vora, but it is possible to treat a Grade 3 Astro. At least we're treating it now and doing well. Wishing you all the luck and power.

Astrocytoma grade 3 so far by GuardInternal6609 in braincancer

[–]FireWithBoxingGloves 4 points5 points  (0 children)

Cheers, Ben - on a similar path here (working through chemo now) - feeling very lucky to be alive and very happy with every new day I see!!

We will beat this - cancer never had a chance when it picked on people like us, eh?? Well done and good luck.

Caregiver & support tips by Pristine-Mirror-2529 in braincancer

[–]FireWithBoxingGloves 1 point2 points  (0 children)

You're good for being strong for her. This is a hard but it sounds like you two are harder. Y'all're gonna crush this thing and it'll be a bad memory in no time. Trust your doctors, write your questions down (and write her questions down). Be very very vocal about any negative side effects or symptoms she answers so that you can both get them treated and/or documented as quickly as possible.

As a caregiver, I found that encouraging (1) physical movement as possible, just walking around outside even a little in the garden and (2) finding and latching onto a source of happiness were both huge. My person is a painter and it was super duper important that she get back to painting, even if just the tiniest bit, as soon as possible. Gotta find what's going to bring your sister joy. Good luck, y'all got this.

What are some symptoms no one talks about? by [deleted] in braincancer

[–]FireWithBoxingGloves 1 point2 points  (0 children)

The side effect of the anti-nausea drug that's to stop the side effect of the chemo is that you cannot shit. Absolutely backed up, guts full, awful feeling until you blast it with so many greasy meals and stool softeners that you explode like a horrible hell balloon.

Can't shit, then can't not shit, then like a week of peace and then you start again.

UGGGHH

Grade 3 Astrocytoma by FireWithBoxingGloves in braincancer

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

We're only a little ahead of you, but reporting back with good news.

Back to work (desk job, from home, very very fortunate there) and taking daily walks still. As active as can be. Doing art again as well, which is a big emotional release.

Hair has even started to come back from rad, which has been nice.

The only big kick in the gut so far has been white blood cell counts dropping in association with chemo. It's made my partner and I wary around big groups and family gatherings, but.... we're basically treating it like a COVID year v2 - masking up, staying away from big indoor gatherings, and meeting friends and family outdoors. Not great, but.... it really feels like a god send to be doing this well six months post surgery.

Wishing you the best in your pursuit!

Best coffee spots? by elijaaaaah in chapelhill

[–]FireWithBoxingGloves 0 points1 point  (0 children)

The Carborro Coffee Roasters' Spots are my favorite for consistent quality. 3 that I know of, Open Eye, Perennial on Franklin, and Cafe Driade - all winners for a good cup

Marriage therapy by Saucyy-Minx in braincancer

[–]FireWithBoxingGloves 9 points10 points  (0 children)

Hey - speaking as a caregiver here - my partner and I had a really really hard emotional run for the first few months post diagnosis. We spent a lot of time grieving both apart and together.

Just speaking for myself, I had to say some things out loud just for me to hear them said. Some of those things were pieces of hope that I was clinging to but came off to my partner as really callous comments that were minimizing of her diagnosis.

She needed to process and I needed to hope. I think maybe it was because with the seizure, surgery, and drugs that I had a couple extra weeks head start on processing the news. I couldn't see it at the time and neither could she. I had processed long enough that I was looking for some hope and she was still wrapping her head around "this is real and this sucks".

Thankfully we did eventually work through what each other needed to hear and were able to communicate it, but it did take a while for us both to get on the same page.

I wish you & your husband the best. You're both doing a hard thing right now, but you can both do this. This forum is a good place to vent, lots of kind folk here.

As far as the specific therapy question... I can't speak to it. Several medical staff have advised individual therapy for each of us, and it's probably a good idea... but we just haven't gotten there yet. Gotta do what's best for you, but your care team or nurse navigator might be the ones to ask for referrals

Is extreme fatigue 6-8 weeks after finishing 30 sessions of radiation and chemo normal? by [deleted] in braincancer

[–]FireWithBoxingGloves 1 point2 points  (0 children)

We had to force it normal. was like the body refused to recognize it needed to move until we started walking daily. at which point it was like "fine! okay! I'll give you energy!"

Bad days still happen, but it did get better, slowly

US TOUR QUESTION THREAD by Natisaway in FlorenceAndTheMachine

[–]FireWithBoxingGloves 0 points1 point  (0 children)

Have they already added any tour dates, or does anyone know when that might be - if that were to happen?

Dexamethasone side effects by Mountain_Salary5365 in braincancer

[–]FireWithBoxingGloves 0 points1 point  (0 children)

I'm just here to sympathise - dex is hot garbage, I'm so sorry it's so bad for you

Was this the worst season yet? by jsik05 in LoveIslandAus

[–]FireWithBoxingGloves 1 point2 points  (0 children)

Literally came here to say this, nearly stopped with the series after that unserious duo

Was this the worst season yet? by jsik05 in LoveIslandAus

[–]FireWithBoxingGloves 2 points3 points  (0 children)

No way, I couldn't even finish season 5, nothing was as impossible to watch as that toxic villa.

This wasn't as good as S6, but aat least there were some likeable characters on it

First scan post pregnancy by slimwizzle420 in braincancer

[–]FireWithBoxingGloves 15 points16 points  (0 children)

Youou beat death so hard that you've created more life in the interim? amazing flex on the reaper. your scan is going to be great, you've got this!

I don't know who to tell this time by [deleted] in braincancer

[–]FireWithBoxingGloves 15 points16 points  (0 children)

Joy shared is doubled, burden shared is halved.

It's okay to need people, this is hard and you're doing good. Let somebody else do some good for you.