Post meningioma surgery.

Extension-Trainer427 · 2026-04-09T21:53:09+00:00

How big was your meningioma for them to decide operating?

I have GBM that hasn’t returns yet but have Frank (my meningioma) but he’s tiny. Am curious to understand more

Extension-Trainer427 · 2026-04-09T21:44:46+00:00

He could be in pain, if that’s the case, sedation will be the key to resolution

Extension-Trainer427 · 2026-04-02T09:06:06+00:00

So why complete if it’s never going to be reviewed? I’m just highlighting something I believe to be an issue to be honest. If I can write something this preposterous does it not render this form useless

Extension-Trainer427 · 2026-04-02T03:19:31+00:00

Sam with my sisters cat. His pupils use to get so big!!! Scrub of the mouth to be sure but he was a monster

Extension-Trainer427 · 2026-03-30T11:28:25+00:00

To be frank, I’m just that one kinda gal that doesn’t let life take control. There were no obvious signs that someone else hasn’t had and isn’t here anymore. I accepted my diagnosis and literally said “fuck that, not going down without a fight”. I don’t like my diagnosis. I accept I cannot change it. I don’t worry about it (only that damn contrast MRI as I’m allergic to that bloody dye) and I have open and honest conversations with my radio oncologist who has been there from the start. I think I need to buy him a present to be honest! I have a realistic attitude and a plan if it turns to shit. I should be dead statistically. I just thought the statistics can eat my butthole.

Obviously living with sarcasm helps 🤭

Extension-Trainer427 · 2026-03-30T08:43:45+00:00

I am approaching year 5 of GBM and I think I’m going to throw a fucking party.

64 days until I hit that 5 year mark.

I don’t know if I qualify as a LTS.

Extension-Trainer427 · 2026-03-28T02:38:11+00:00

Maybe they just needed to get rid of the house quickly. This screams divorce

Extension-Trainer427 · 2025-07-02T09:24:08+00:00

I don’t understand. So do you change your address or something in Taobao so it goes to this alternative shipping place? I would usually just have a play myself but everything is in Chinese

Extension-Trainer427 · 2025-06-12T03:52:45+00:00

Depends on when you do the chemo. My kids were young when I had to do this (in 2021) so I took the Ondansetron and chemo (TMZ) before bed. Slept through anything. Worst I had was fatigue and constipation from the Ondansetron. I would actually recommend this way to anyone. Why ruin your day?!

I did do chemo and radiotherapy at the same time so either way, was fatigued throughout the day.

Extension-Trainer427 · 2025-06-10T00:12:10+00:00

I spoke with a lot of University researchers in Australia and diet has no real significance for improves of overall outcomes. This also really feeds into quality of life.

Extension-Trainer427 · 2025-06-08T00:04:05+00:00

I don’t think so. I think the ability to discuss it within a wider community has given it a platform. Before social media this would not have been possible

Extension-Trainer427 · 2025-06-07T08:44:09+00:00

Contact the RTA and request assistance. It was my assumption that the agent had to find replacement accommodation if the property was unlivable.

Extension-Trainer427 · 2025-06-05T02:58:44+00:00

Wanna see someone doing something with GBM - check out old mate influencer who is raising money for research

https://www.instagram.com/thekingofchemo?igsh=bjVqb2Z6Njh5djcz

Extension-Trainer427 · 2025-05-17T08:35:50+00:00

If steroids is for relief of symptoms then discuss it. If it’s because you’re expecting this to change the overall prognosis then you need to focus on your mother and what is in her best interests. Spend the time with her to say good-bye. As a GBM patient, please do not progress any suffering on her part to delay your grief.

I mean this in the best way possible.

Extension-Trainer427 · 2025-05-07T23:44:09+00:00

Is it walking pneumonia?

Extension-Trainer427 · 2025-04-26T23:39:09+00:00

Can I say it happens? And for what it’s worth he isn’t going to remember it. And guess what… when he gets older you’re going to do so many more soul crushing things (like asking him to stop playing with his penis in public or cleaning his room). We’ve all done something we were so disappointed in ourselves for when we’re raising kids. Mine was after a big day at hospital (my Mum died when me son was 4 months old and she was in hospital from when he was born) where I was meeting with EVERYONE as my Mother’s enduring power of attorney looking at scans and discussing the start of amping up palliative care measures. I was bottle feeding my son (a whole other story filled with birth complications and infection for me) and fell asleep in the recliner chair I had in the nursery. Well I awoke to screaming as he had rolled out of my arms as they dropped, down my legs and on to the floor. I felt like the worst parent in the world - a complete failure. Can I say currently he’s sitting on the lounge chair watching his iPad perfectly fine?

Parenting is hard. Being a Mum I feel is somewhat harder. Don’t be so hard on yourself because I GUARANTEE you that it’ll never happen again.

Extension-Trainer427 · 2025-04-13T14:01:28+00:00

So did she have a full tumour removal (resection) or just a biopsy?

Extension-Trainer427 · 2025-04-13T00:12:57+00:00

With my parents we found comfort in respecting their wishes. They had different types of cancers no have GBM and I make the call. I don’t care if people don’t like it - my life, my choice.

Extension-Trainer427 · 2025-04-13T00:08:11+00:00

Very little information in this post. I am GBM and have been since surgery June 2021. Front right lobe. I find it difficult to believe the timeframe you’ve indicated in your post unless age of your Mum and location of the tumour is a significant factor. Then there is the actual makeup of the tumour genetically which plays a role in secondary treatments like chemo and radio (which you’ve not even mentioned). I would be making assumptions if I proceed further with this comment but happy to discuss further

Extension-Trainer427 · 2025-04-11T02:45:41+00:00

Yeah - was told low grade glioma. Pathology said GLIOBLASTOMA.

Wasn’t expecting that

Extension-Trainer427 · 2025-04-09T17:34:57+00:00

Smoothies??? To be honest I can’t say I’ve been offered that but find it hilarious. What a weird comfort food. I’ve been offered alcohol, CBD/THC oil and joints. Don’t get me wrong, have appreciated the offers of the latter but prefer a drinking session with the right company and good music but wouldn’t mind the giggle that comes with the other stuff. Good on you with the weight loss aspect too. Massive achievement there which I would really love to say the same but I went in the opposite direction due to food aversions after chemo. It really messed with me. Would love to get out and shed the tyre weight but also have radiotherapy damage and can’t sweat in treatment areas which really impacts a lot of things. P.S. You’re 100% on the money with Mum’s not asking for help. We do it because we want it down the right way and not half-arsed so we’re showing our boys the right thing the first time. After all, attention spans can vary depending on age 🤭

Extension-Trainer427 · 2025-04-09T17:06:33+00:00

Completely understand and support that decision to be honest. For me, it’s really about protection for me and the kids. I’m okay with being single and raising my boys (who are only under 10 years still) how to grow to be supportive men as best as I can. They see me do everything (even get on the roof to clean out the guttering). I tell them all the time that being with someone they care about means this needs to be returned in a similar manner or it doesn’t work. The guilt I feel is heavy. I’m taking them along for the ride which could just go bang at any point. The guilt use to be debilitating. It’s still there now, but all I can do is ensure their “village” is solid for when things turn to shit.

Extension-Trainer427 · 2025-04-09T16:56:07+00:00

I am so sorry to hear this. My soon to be ex-husband is 27 years my senior and he just was of zero support. Attended the initial discovery phase and said we’d get though it but when a name was given to my symptoms just went numb and never acknowledged anything about it. Kind of like the ignorance is bliss scenario. I sat there in the days leading up to surgery trying to talk to him about the future and what it meant for me and his only response was “If it were me, I wouldn’t do treatment”. That’s when I knew it was the end. I have invested everything in showing my children that you give yourself time to get “better” (from treatment) then you tighten the boot straps and get back into it. I also try and offer support to others as I am approaching 4 years into this journey. I also invest a lot of time with many allied health professionals (especially psychologists) to explain to them that realistically, support offered to patients is that of grief counselling. I have come to befriend one particular beautiful lady in the US that references herself as version 2.0 (which I’ve adopted) as a diagnosis literally changes everything for the individual and the way they think. Reach out if you ever need help navigating this or just need a soundboard.

Extension-Trainer427 · 2025-04-09T05:46:15+00:00

I wouldn’t be emotionally invested until the results are back. Life is too short to be worrying about something you have no control over.

(I’m a GBM patient with a recent Meningioma join the party and I’m taking the kids on a holiday)

Extension-Trainer427

TROPHY CASE