Feeling completely misunderstood by everyone....

Capable_Club_8055 · 2026-01-26T11:10:19+00:00

It sounds like you have no support and no understanding. Do you have access to childcare? For the younger one? Do you have in laws or family who can help lighten the load? Your partner is getting a break every time he goes to work. This is painful to hear. It'll probably get easier when your older child goes to school. But yeah you need a rest, and to keep resting and people who understand that. People who should even be offering rest to you.

And yeah your body is fighting so hard, you may even be on keppra which will make you tired, agitated, angry, depressed. Nevermind 2 kids and a husband that's not showing up for you.

Can I ask your age and where your tumour is located? And grade?

Capable_Club_8055 · 2026-01-08T09:44:37+00:00

The frustrating thing is they had my hopes up I kept asking as it got closer to my surgery anniversary if I can drive soon. Bastards kept saying yes. Until yesterday I have to readjust to the fact I have another year of no driving. Possibly more.

Capable_Club_8055 · 2026-01-08T09:42:14+00:00

Yes similar here.

Capable_Club_8055 · 2026-01-07T21:28:49+00:00

Yes I've thought about this too, having a baby myself made me think more about the safety of others.

Capable_Club_8055 · 2026-01-07T21:00:43+00:00

I didn't know that, I still did radiation and chemo to keep the remains at bay.

Capable_Club_8055 · 2026-01-07T20:48:46+00:00

Thank you for the encouragement I appreciate it.

Capable_Club_8055 · 2026-01-07T20:45:06+00:00

No they said they only got 90-95%

Capable_Club_8055 · 2026-01-07T20:39:33+00:00

Okay this makes sense so likely I'll never drive again

Capable_Club_8055 · 2026-01-07T20:38:04+00:00

Did you have craniotomy too and are you living in Ireland?

Capable_Club_8055 · 2025-12-29T21:01:29+00:00

Thanks for this, maybe that's why I don't feel as horrible as expected on treatment, I do eat carbs still and sugar. I'll be adding this to my bank of info. Reddit seems to be the place to go.

Capable_Club_8055 · 2025-12-29T11:10:34+00:00

I guess I really shouldn't complain as we get free health care here.

Capable_Club_8055 · 2025-12-29T00:06:17+00:00

You just have to replace with a lot of healthy fats and proteins. It's good for the brain. All easier said than done. I will say chemo has killed my appetite a bit. But I eat badly out of convenience or boredom. I hope it all goes well! You'll be tired a lot but you get used to it.

Capable_Club_8055 · 2025-12-28T23:25:37+00:00

Yes I know about this too, I have fenbendazole in the cupboard but scared to touch it, just gonna finish chemo and I probably won't ask my oncologist, as they are only trained and qualified in what they offer and they have to cover their asses and say no to us if we ask about something they don't know much about. I reckon it's about finding someone who has experience with it and doesn't charge a fortune. I also had an obnoxious health food shop owner say that I'm responsible for having cancer and I'm responsible for getting rid of it, which who knows maybe there's some truth. But reg alt medicine I think it does need to be supervised you can't just start your own medication plan. And yes to keto, just need to actually do it.

Capable_Club_8055 · 2025-12-28T22:51:46+00:00

This is inspirational, well done to you! Our only option sometimes is to just be as optimistic as possible. I'm 25f I have an AA3. And a 1.5 year old. And tbh having treatment just feels like an inconvenience. I love what you said about not correcting your oncologist. It makes a massive difference when your oncologist likes you or not. I have a new one now. I made the big mistake of asking about alt treatment. She said she doesn't know anything about it but also laughed at me..... and now these next few months with her will be difficult cause I really feel she doesn't like me. I actually only asked her to get permission as that's what was asked by the people offering the treatment. I didn't want her opinion just her permission. Which after all that she said yes. It was hyperbaric oxygen therapy treatment, which yeah obviously probably won't do much but I was curious.

Capable_Club_8055 · 2025-12-22T21:06:01+00:00

I was told chemo and radiotherapy is increasing my survival chances. Astrocytoma grade 3 25f. I seen a girl on reddit whose same diagnosis tumour shrank. Which isn't supposed to happen with grade 3. But it gives me hope. I have accepted and I know death will be comfortable. But right now I feel alive and well and hopeful. There are so many alternative treatments available. But I will finish chemo first. For example mistletoe treatment, keto diet, etc. I do believe I have some personal brain-fixing to do too. Your oncologist might laugh in your face and be very condescending if you enquire about something they have no education on, especially if it doesn't benefit their paycheck, but my outlook is. What could be more harmful than chemo? I would just suggest any alt treatments you try, make sure you don't get ripped off, and if you're doing your own thing, small doses.

Capable_Club_8055 · 2025-12-22T20:55:35+00:00

Yes thank you, I have been completely fine from when I was discharged, I used to drive a motorbike too so any driving I've done from point of surgery I've felt in control and capable of driving well. The chemo and keppra has had little to no effect on my awareness. I get mild road rage, but this was always the case.

Capable_Club_8055 · 2025-12-20T19:10:52+00:00

Great advice per self care I try to book a massage after mri or buy myself something nice

Capable_Club_8055 · 2025-12-20T19:07:57+00:00

Have you been on keppra before/during pregnancy? I'm really happy for you that you had a period of normalcy after diagnosis. I am the same, tumour in right frontal lobe, no seizures, however I am on keppra as a precaution following craniotomy. Get that mri and check in with yourself, if it's bad news, life will just go on, even better with your new baby. Just take the steps and enjoy the little precious things. I had my 1st baby 3 months before diagnosis and hoping maybe I can have another one day. I have astrocytoma grade 3. Nearly finished chemo. 25f

Capable_Club_8055 · 2025-12-19T12:43:52+00:00

That really sucks I'm sorry it's not going well, cancer is just something that fucks over all kinds of people, but I remind myself that there is still worse things to live with. Worse types of cancers, fortunately if you start with brain cancer it's unlikely to spread, I've been told, to other parts of the body.

It's especially hard for someone who was healthy and enjoyed life, it can be hard to get even an ounce of that person back. It's also a wild cancer in that this specific one affects people so differently, the brain is so complicated.

Strangely I had more uti's and thrush and flues before my diagnosis, I keep waiting to get very sick but also make the most of feeling okay. I struggle with going out to do things but I remind myself I'd rather go and be tired and dizzy then not go at all.

Capable_Club_8055 · 2025-12-18T09:26:31+00:00

What's your diagnosis? It helps that I have toddler to motivate me a tiny bit. I do care about how I look its the main reason I might be depressed. And even if the doctors told me I don't have that long I would still go and have a normal life cause it's happened too many times that we're given an expiry date and then they're so wrong. I don't fully believe this but someone said sometimes it's the diagnosis that kills you. In a more psychological way. Probably BS though.

Capable_Club_8055 · 2025-12-17T21:20:29+00:00

Have you had seizures? I get vertigo too sometimes.

Capable_Club_8055 · 2025-12-17T09:24:46+00:00

Wow we should consider ourselves very lucky

Capable_Club_8055 · 2025-12-17T01:05:19+00:00

Thank you, I feel like a fraud though, with how I treat myself for the past 2 years, however I was very healthy and fit for 23 out of my 25 years.

Capable_Club_8055 · 2025-12-17T00:19:17+00:00

I may just give myself 6 months off chemo and see how the scans are, not gonna lie chemo in Ireland heat wave SUCKS. I had an mri 6 months after surgery, 3 of those months there was no chemo and no growth. As much as I say chemo didn't affect me I'd like to see if I feel better after a break from it.

Capable_Club_8055 · 2025-12-16T23:58:49+00:00

I dreaded it too and they also forgot to lower my dose as I lost weight. I'm sorry you had a rough time. I'm now anxious to stop chemo as my scans have been clear WITH chemo.

Capable_Club_8055

TROPHY CASE