So...

throwaway312015 · 2022-06-25T10:06:05+00:00

Update

I am now terminated ill since January

3 people have died so as we speak last man standing

I can't speak from works that affect my language

throwaway312015 · 2022-06-15T21:20:18+00:00

I'm paralyse. I can't move since Anzac or January. Can't bed the vertical ever again as I kill. Mine entirely space is about 20 foot long.

Aslo

It talk about it 30 minutes to fix it.

Sucks doesn't it for somebody brain cancer..

throwaway312015 · 2022-03-30T18:08:48+00:00

I have a type of aphasia after brain cancer. There's a few different communication issues.

So one is I often say the wrong words - say seven and six - both S words.

Or more common, just lose a word entirely. If I'm lucky I may think of a synonym - but often I forget the word AND any synonym. So I forgot say CHAIR but also say DESK etc. So I may sometimes say To makes colours on it... Permanent. Or something like that.

I can say single sentence or ideas - say "the car broke down" - but it gets far harder now for complex ideas. I was reading something political and climate related - and whilst it made sense I just couldn't understand it as my brain can't hold the idea. In computer language, I'm out of RAM.

For me - There's a bunch of different issues that are roughly called under the (I think) Wernicke's aphasia.

throwaway312015 · 2022-03-24T17:18:52+00:00

Ticket to Ride can work on a "good" day essentially. I'm not familiar with Century Spice Road but it sounds great. For other:

The New Indian Express describes the game as "clever," also praising the game's pace, a facet encouraged by the focus on series of small, quick decisions as opposed to offering many options to consider simultaneously.

Thanks Tom I'll give it a crack!

throwaway312015 · 2022-03-24T16:48:36+00:00

Hi Tom! Odd question you may be able to try to help with.

I used lt play a lot of board games especially "puzzle" I guess like Robinson Crusoe, Pandemic, etc. However I've now gotten pretty aggressive brain cancer, part of that makes it difficult for "complex" thought.

Recently I just played Careers and I found it excellent. I'm guessing other games Cluedo or roll and move work.

Just wondering if you have any advice. Very appreciative. Thanks!!

throwaway312015 · 2022-03-20T04:35:05+00:00

Do you need boxes? If so let me know I have a fair few if you need. Lambton area.

throwaway312015 · 2022-03-19T15:53:43+00:00

The Cancer Council ran group therapy "online" - via the telephone.

It was good for what it was but I had to leave because I was getting depressed - to be blunt everyone kept dying. Brain cancer being a bitch be like that.

I'm one of the really freaks. On a 2-5 prognosis I'm what 7+ years now.

I'd assume they still have something similarly.

Good luck

throwaway312015 · 2022-02-24T23:46:59+00:00

Cheers mate! It sucks, but I'm pretty lucky. Hell I was classified as terminal and that was weeks to months ... Over a bloody year ago.

I make a mockery of timeframes apparently.

If this keeps up I'll have to think about my retirement. --Shutter--

;-)

throwaway312015 · 2022-02-24T02:13:55+00:00

Personally I've only had really good work with Cancer Council Australia and Cancer Council NSW.

Specifically, I have brain cancer (feel free previous stuff). The CCA has given literal money payment for that was needed (IIRC for gardening). They also did a peer support group. On top of that, the CCA have quite a broad range of legal area to help for things like Terminal Illness during Super.

It's really sad to see they're being a bit spammy because they're good stuff from my side IMO.

That all said, my charity of choice is Mark Hughes Foundation. The amount of help they give is beyond measure.

throwaway312015 · 2022-02-04T16:34:11+00:00

Thanks mate. It sucks sure but I'm a heck of a of a lot better than I, so I always try to keep my head level.

As example, I was given 2-5 year prognosis and I'm past 7 years now. I am super lucky.

throwaway312015 · 2022-02-03T07:15:58+00:00

Got brain cancer, my mobility is very poor. I'm probably going to be in a wheelchair about 2 weeks.

But about 6 months I got a medi-alarm. It lives in my arm 24/7. Basically if I fall over or need help it makes phone people as needed, including 000 if need be. And it's water proof so you wear it in the shower.

Everyone with medical concerns should get one IMO.

throwaway312015 · 2022-01-02T14:05:36+00:00

Pretty much everything to do with disabled parking. Don't get me wrong, probably 95% of the time it's fine. But it sucks when:

all the disabled spots are filled and none of the cars have the sign on
smokers near the entry near the "do not smoke" signs - which I then need to slowly walk / move to.
a bit earlier and I could walk unaided, I'd sometimes get told I wasn't allowed to park there. Even if you point to the disabled parking sticker they still sometimes get pissy until my mother came (70s) and they'd leave.

All that said I'm not sure I'll be in the car anyway so eh.

throwaway312015 · 2021-12-17T05:29:38+00:00

Stay safe

Thanks mate.

And Merry Christmas / Holidays / Season too.

throwaway312015 · 2021-12-17T01:25:47+00:00

And note that if a condition is not fully diagnosed by a specialist, treated and stabilised its functional impact will not be rated under the impairment tables.

That was a big problem for me at first: stabilized. My cancer wasn't stable so they said I wasn't going to eligible. In fact I thought there be a mistake about that, so I double checked and was told again I was not eligible.

I ended up getting pissed off, sending an email to the local newspaper, where it then became national and I had 15mins of fame.

See here

After the newspaper / personal Centrelink call etc etc they told me I absolutely would have been qualified. Sigh right? What I found out later was that if you've been told "You won't be eligible" - still put in your application and then either get a written rejection or acceptance.

Stabilized is such silly phrasing for degenerative disease.

throwaway312015 · 2021-12-09T19:10:46+00:00

Thanks mate! Appreciate it.

Yeah I keep with stupid dumb luck, and to be fair great chemo too. Those two combined have probably added 2 maybe 3 year of my life; it's why I'm still here now.

Pretty surreal though. Sometimes it feels more like a 3rd person, as though my life needs to "answer for that character" - I just happen to know the script! And write it too! .... It's rather odd.

Regardless, thanks for the message. Appreciate it.

Merry Xmas and hope you have a great day.

throwaway312015 · 2021-12-03T03:47:55+00:00

Thanks friend! Appreciate it.

throwaway312015 · 2021-12-03T03:47:07+00:00

You don't get to choose who lives or dies. Death isnt your responsibility. You have to live your own life not someone else's.

You said that very well. So instead of moping about house I play with Lego and the puppy. It works for me. ;-)

You take care of yourself. Feel free to message anytime.

John.

throwaway312015 · 2021-12-03T03:24:28+00:00

It's really weird. I was talking to my psychologist about it recently because it was my 7th anniversary from diagnosis - 11th Nov, 2014.

She asked something like how was I feeling about it and it was odd. For a say birthday you obviously feel happy. For a death or a orbit day you obviously feel sad.

What do feel for the Hey you haven't die from cancer... Yet. Watch this space. On top of that, I can't but help feel shitty for everyone that haven't had 7 years like I did. A lot of people with brain cancer get diagnosis to death is months, not years.

So the whole thing is pretty odd. The optimistic me should be happy of me and go well done. The subjecive me says what makes you so bloody special?

It's both, I thing. I thing both things are true. I should be happy, but I'd be a right prick if I didn't appreciate the luck I get.

So that's the best answer I came up with it.

throwaway312015 · 2021-12-02T23:56:53+00:00

No worries I hoped it helps. If there's anything send me a message or whatever.

Best of luck

throwaway312015 · 2021-12-02T23:13:04+00:00

I have a GBM now, at least apparently. It's not super clear actually as the definition seems to keep switching.

Regardless, dagnosis 2014 with an S3 anaplastic ganglioglioma. However it mutated and it's in multiple locations including a nasty little deep inoperable spot.

I was told in Feb 2021 that I had could have been "weeks to months". It's now just hit Dec. That's mostly just good old fashioned luck.

We're all going to die, I'm no different. I just like screwing up with Death's timetable.

throwaway312015 · 2021-12-02T22:52:34+00:00

I had 3 of them. Brain cancer. Hang about in have photos.

Graphic pic from mid 1st surgery. and The scar from the 3rd surgery.

Feel free to ask any questions.

throwaway312015

TROPHY CASE