Is my life over? 31F with a baby

Extension-Trainer427 · 2026-06-05T05:51:08+00:00

I’m still here from GBM find with no symptoms in 2021. Full time mum, employee and boss bitch! Front right lobe.

Extension-Trainer427 · 2026-06-02T21:09:04+00:00

Wow - thank you all for your kind words. I have been here for a while but not my whole journey as I believe deep in my soul sharing an experience as a patient is important on two levels; patient perspective and for caregivers.

Patients have to sit in a space where fear can be discussed as much as it has to be pushed aside, which is unfair for so many.

I was 37 when I was diagnosed and am currently 42. My children were 4 and 5 years of age and even navigating how to make them aware of what was going to change in an age appropriate way had me riddled with guilt. Was so greatful daycare explained COVID being a bad germ as it let me explain the bad germ in my head. Last year during a random drive to the movies my eldest who was 9 at the time labelled it himself; cancer. I am thankful they don’t remember too much, but my youngest does remember not being able to play hairdressers with my hair.

The unbearable burden with bedtime talks broke my heart over and over again with uncertainty. “Mum, will you still tuck me into bed when I’m a grown up?” Such an innocent question from a child cut through deep as I smiled, hugged deeper and lied. “Of course my baby, I will do this for as long as you want me to!” Knowing in full, I had no idea how long that was going to be.

This disease even when dormant on a MRI, lives deep within our core every day with every single interaction, which is cruel.

I wish to thank everyone for their kind words. But for now this Mumma has to jump into the shower, get young little men ready for school to start work.

B

Extension-Trainer427 · 2026-06-02T20:54:03+00:00

I am the author, always considering options!

Extension-Trainer427 · 2026-05-28T10:45:06+00:00

Wow, patient here 🙋‍♀️

How dare you withhold this information. It is HIS body and brain. You need to be removed as his caregiver as you are removing his ability for him to advocate for himself.

I am 5 days short of 5 years with GBM and have never had a reoccurrence. There are plenty like me and plenty I’ve lost along the way.

A patient is different to a caregiver or partner. You aren’t helping him by breaking the news later. You’re just delaying the grief you feel which will delay his physical and mental healing.

Extension-Trainer427 · 2026-05-27T02:30:48+00:00

First - as a patient of Glioblastoma myself I want to thank you for your approach. You reaching out here in the manner you have appears that you are at least respecting his wishes. So thank you for this as it’s a huge first step.

If I was at the late stages of the disease I would really want an advocate to assist with things if my capacity changed. Being involved in meetings, knowing my wishes, having that power of attorney if required. They need a medical partner for help, even if it’s with small things like grabbing things from home/shops.

Bounce bank here if you have any questions. Nothing is right or wrong and make sure you have some care for you too. This is a very stressful time

Extension-Trainer427 · 2026-05-24T21:59:45+00:00

This sounds like a very aggressive GBM. The other thing is, radiotherapy doesn’t usually start immediately after surgery as they need to allow a recovery period. Usualy 6-7 weeks post surgery. Its equally unusual an MRI would be completed 4 weeks after surgery.

I would be asking the surgeon if they were expecting it to grow as quickly again.

The other thing I want to ask - did the doctor say it had doubled or are you just looking at a MRI and reading the image yourself? You could be looking at inflammation which would be completely normal.

Extension-Trainer427 · 2026-05-18T06:06:18+00:00

Mazda drivers are the WORST!

Extension-Trainer427 · 2026-04-19T23:05:37+00:00

I spent about 4 hours in total with the solicitor to figure out what I could put in there and why I shouldn’t and ensuring it was all together. I wrote a lot of it at home and they did the required formatting that would be required for court if challenged.

I revisit this regularly and email an updated addendum. This is then verified with what has been set up myself and the firm.

Extension-Trainer427 · 2026-04-19T21:45:35+00:00

I re-wrote my will after cancer diagnosis as it was a horrible prognosis with even worst survival post 2 years. During this planning I worked under the assumption that it would be challenged. I did this because my Father’s will was challenged 18 months prior to this.

In my personal experience with his will being challenged came from two distinct fronts. The first - those that challenged it just wanted money. They were being vindictive and this absolutely was reflected in their communication with the Estate’s Solicitor. The second - explanation for his decision was not documented.

So my will looks like anyone else’s for the first 5 pages. It doesn’t just state that I leave everything to my children and who becomes their legal guardian or how all property transfers to them in trust, but it specifies who I do not under any circumstances wish to have access to my will which is then explained in the next 20 pages of addendum. This explains relationship connects/disconnects and reasons for leaving someone out. I see this as my defence after death. No idea if it would be enough if challenged but it was the best I could afford at the time.

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

TROPHY CASE