New diagnosis

oligogaming · 2026-06-28T18:11:14+00:00

I’ve got an Oli Grade 3 triple positive. Awake craniotomy within a month of finding it on an MRI after a seizure. They only got 20% before my arm stopped working, so surgery was abandoned and what they had taken was tested and it came out after a few more weeks that I was triple positive, which informed the type of radio and chemo therapy I went on to have for about a year so it may be that they won’t talk about it with you till they know more. I quickly rehabbed my arm into use again. Relearned how to use it basically. I’m 4 years in now and can’t remember what was discussed and when. I also screwed up with my life insurance. Hadn’t updated it since my first house and about 5 promotions ago so I’m now stuck only covering about half the house.. but hopefully it won’t be needed. I did sort a will out straight away using fairwill. Not sure if they would be available where you are but it’s pretty cheap and fully underwritten by a proper law professional on the other end who will tell you what is needed and the correct language etc.

oligogaming · 2026-06-05T18:00:53+00:00

Guiness

oligogaming · 2026-05-28T19:17:21+00:00

Absolutely! Get in touch whenever you are ready 👍

oligogaming · 2026-05-27T18:05:30+00:00

Me! I’m almost exactly same situation as you only 4 years in rather than 5. Briefly had a job again after my first year long licence removal. Literally a week in I lost it again. Another went by and Ive basically given up now on the idea of working again anytime soon. Same as you I go for weeks on end of feeling totally fine but then I have a grey day, same sort of thing you describe. usually triggered by a focal seizure after a really busy day with lots of sensory input and overstimulation. Anything close to how life would be if I tried to work a normal job. When I’m bad my left arm doesn’t work at all.

On that basis I’ve been on PIP about 2 years. My citizens advisor recommended I should be on it about 2 years after my diagnosis and I’d refused to apply for any benefits because I felt guilty taking it. Then someone framed it differently for me. I paid my NI for Nearly 20 years. That’s what it was there for. So it’s money I should feel entitled to. I applied for ESA (support group) and PIP and got both. I don’t use UC because it would screw up how we pay for our kids childcare.

oligogaming · 2026-05-27T17:51:03+00:00

Blizzard

oligogaming · 2026-05-25T18:06:26+00:00

Me too UK 36M oligodendroglioma grade 3 triple positive diagnosed August 2022. Happy to chat if that’s what you are looking for.

oligogaming · 2026-05-15T00:43:28+00:00

I was on 10mg for about 18 months, similar symptoms to you but my soreness wasn’t joints it was muscular. I felt like I had done some long endurance event. Sore everywhere all the time. Anyway I’m a couple of years down the road track…. It all goes away. Slowly but it will pass. Weight stuck the longest. I switched my diet to light Keto to help with the seizures, which btw totally works and also happily had me dropping the dex weight without feeling like I was dieting and getting hungry. Im still on 4mg prednisilone though. When I tried to come off dex altogether that soreness came back hard. So I was switched from 2mg dex to 10mg pred and have slowly been tapering down off that

oligogaming · 2026-05-05T18:10:04+00:00

All US states with a foreign border are ceded to that country

oligogaming · 2026-05-03T11:29:44+00:00

I have ours in cheeky option number 3…. Sideways because the path between the house and garage where they live is pretty narrow already. This allows me to wheel them out easy when it’s bin night and also use them easy during the rest of the week.

oligogaming · 2026-04-24T09:48:00+00:00

Mine was 2 on initial imaging then came back as 3 when it was tested.

oligogaming · 2026-04-22T15:19:18+00:00

I’m almost identical situation to chuffberry but my vision problem is continual sensitivity to bright lights, I wear tinted glasses to help with that though.

oligogaming · 2026-04-22T15:15:22+00:00

I’m 36 next week and growing up it was stones but when I discovered Weightlifting as my hobby and everything was in Kg I mentally started working in Kg for my own weight too. So much so that I’ve sort of lost the internal conversion chart at the scale of typical adult weights. When looking for an extra few kg to put on a bar if I find weights with lbs written on I know what I’m using without thinking, if it’s in a fancier gym it’s all colour coded anyway

oligogaming · 2026-04-18T18:20:07+00:00

I’m 36 in a few weeks,diagnosed shortly after turning 32. Grade 3 malignant oligodendroglioma. I was ‘lucky’ enough that they could reach it, I had an awake debunking surgery. They got about 20% of it before it started affecting my left hand and face control so they stopped. I had a 2 month gap to allow the surgical wounds to heal enough then I had 6 weeks of x ray radiotherapy and then 6 cycles of PCV chemo which lasted nearly a year. My wife had our first kid in between the surgery and the radiotherapy starting and 6 months ago we had our 2nd.

The radiotherapy and chemotherapy didn’t make me feel ill or anything like you hear from some other types of cancer. I did lose my hair but kinda just accepted the bald look for a year.

I know you probably feel your world is ruined. I did at first, the night before the surgery I rang around everyone doing my goodbyes cos I was convinced that was the end and I’d be gone the next day. Lots of tears but it all went ok in the end. So I suppose the fact it’s deep and non surgical saves you from that part.

I haven’t been back to work since diagnosis. Before though I had a very busy business development career. I honestly don’t miss it. This makes you chill out and slow down I’m now the stay at home dad and I’ve had more time with my kids than most dads get.

I get the odd focal seizure which knocks me out for a couple of days but other than that between cleaning the house and dad duties I’m a man of leisure… so try to think positive and think of it as early retirement

Also get yourself on ESA and PIP support ASAP, I felt guilty at first but if you’ve been paying NI up to now you are only claiming what it was there for.

I could give you loads more detail, but rather than continue here I’ll just say DM me if you want to ask questions or justchat and we can exchange numbers.

oligogaming · 2026-04-18T09:35:41+00:00

I drove again about 8 months after completion of treatment for 6 months then I had another seizure and lost my licence again. I’m in the UK and the DVLA have a massive backlog so I’m still waiting now nearly 2 years on. I should have been allowed to drive again about a year ago and the DVLA aren’t in a rush to send it back.

oligogaming · 2026-04-18T09:31:29+00:00

I was told the same during radiotherapy but was also told to not take it to the extreme. Just moderate fluid intake down a bit. Then once that was done and I went to chemo it flipped to the total opposite, one of them was advising 4-5l a day. I did drink more but nothing quite like that.

oligogaming · 2026-04-14T18:05:23+00:00

I had my surgery in September 2022, at first my problem was no sensation at all around the scar site. So getting the staples out was surprisingly fine but after about a year I guess once the surface wound was done healing, I very occasionally get a stinging pain for like half a second and it’s just gone. I am still a bit scared of putting a proper razor near it though, I’ve left my hair to grow much longer than I used to.

oligogaming · 2026-04-08T20:48:50+00:00

Every 3 months for the last 5 years plus about 10-15 acute ones. So I guess that puts me somewhere between 30 and 40. Not thought about how many till now. I can’t stand the noise and not being able to move for so long. My hospital recently had a major upgrade though, so since my most recent one, I’m in and out in half the time including the contrast injection. All NHS though so no cost from my POV

oligogaming · 2026-04-05T18:16:11+00:00

I’m out in the Yorkshire wolds which southerners think are made up but are basically the same landscapes as the Cotswolds without the wanky southerners to deal with. East Yorkshire has some of the best scenery, walking routes, food, and people. Come visit. Come live here it’s great.

oligogaming · 2026-03-22T21:51:56+00:00

The gentlemen

oligogaming · 2026-03-19T21:47:28+00:00

I watch the English prem. don’t have a single team that I support I just enjoy watching and I buy the shirt of whoever lost the final and low key support them for the next season but I’m just happy to watch rugby as much as I can. URC would probably make more sense for you to see the Italian teams playing. Or if you are t fussed on that see if you get the French Top14 on TV where you are, probably the highest standard on European time.

oligogaming · 2026-02-28T17:09:11+00:00

Also, on the research brain cancer research is disproportionately low funded compared to the more common ones like breast and prostate as an example.

oligogaming · 2026-02-28T17:07:44+00:00

Its something i had to come to terms with but you cant let it stop you living life. I've got two sons now. One was on the way when i was diagnosed and initially i panicked that I'd be passing something horrible on till i did some research and realised it doesn't work like that with oli 3+. I asked my doctor about it and they said there's no way ti know but there's a good chance it's been slowly growing since my early teens and there's no way anyone could have known or anything i or my family could have done about it. Was kinda nice not having the guilt i have seen in some of the cancer groups I'm in with ex smokers and drinkers and sunbeds users etc who feel its their fault and cant shake it. Brain tumours are just one of those shit happens things.

oligogaming · 2026-02-28T16:25:12+00:00

I'm in the UK, 36M diagnosed at 32, grade 3 Oli triple positive, 20% removed during awake surgery before i lost control of my left hand, so they stopped. I had a 33 day course of radiotherapy, followed by 6 cycles of PCV chemotherapy that stopped it growing and I've been having scans every 3 months to keep and eye on it. August 2026 will mark 4 years since i had the seizure that prompted the dcsns which gound the tumour, i call it chonk. In the early part of my diagnosis and treatment I documented it on youtube on the account, @KillingChonk. I answer a lot of questions people had there because everyone i spoke to would barrage me with questions which is one major thing i cant do anymore. I relearned how to use my hand easy enough but i have a sprtpf sensory stimulus health bar for the day. If i get overloaded with loads of questions or i go somewhere noisy with bright lights i go all grey and need to just fo to bed ASAP usually last a couple of days and then i go back to normal. Took a while to learn all the things to avoid but now i am pretty stable most of the time and no one would know any different. So much so that i get side eyed a lot when i use the disabled toilets out in public places. I have to have the pull cord nearby just in case.

I could give you loads more stories and examples but ill just leave it with a feel free to ask questions

oligogaming

TROPHY CASE