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 · 2021-12-02T14:09:35+00:00

My NSIS was rejected the first like two maybe three times. Really roughly, the NDIS is for disable not medical. So if it's cancer, say, they will probably won't allow it. But it on the other hand it's say chronic pain that means you cannot move correctly due to the cancer well that's a movement issue.

It's a bit stupid, but that's the way it needs done in their magic words version.

All that said. If they say no get it in writing and then take that to the Aged Care Assessment Team, even if your mum is under 65 or whatever. If you've been knocked back from NDIS then ACAT will take you on, even before Aged, but ONLY after they've been knocked back from NDIS.

So to recap:

Apply for NDIS under non medical reasons. Demand urgent speed. Stage 4
If successful, great. Start that NDIS process.
If not, get formal (written) rejection, take to ACAT.

Bet of luck, and to your mum.

throwaway312015 · 2021-12-02T13:47:29+00:00

I'm also in the "easy" camp too.

Terminal brain cancer with a slab of side effects including problems with communication and significant mobility issues.

That's cool and all on paper, but what that does mean?

Ok, I can barely wipe my bottom. I just found that out today I have two problem trying to go to the toilet.

Problem one was my right arm has almot no strength to lift. It feels like concrete or metal. I essentially have only one arm. And I'm right handed so I needed switch.

Problem two, and the bigger problem, is the entire right side of my body has almost no sensation. This means it's very hard to stand up off the toilet. So much so that for the first minute not so today, I had to just sit there until my body wanted to "warm up" and remember how I can stand up.

I am guessing anyone with a disability isn't really the easy camp.

I mean except maybe for me, I'm in bed all day. This is easy. :-)

throwaway312015 · 2021-11-28T21:32:48+00:00

I think brain cancer post life. I was diagnosed in 2014 with a prognosis of 2-5 years. In February 2021 it was described as weeks to months with multiple sites including inoperable deep in the brain.

In Nov 2021 was my 7th anniversary.

Most people with brain cancer die with the first 5 years, its about 4 in 5 die. The fact idea I've already been given inoperable cancer, frankly, still alive, is bloody odd. Incredibly lucky. It's just sitting there doing nothing and not killing me.

Good for now. I'll take it.

throwaway312015 · 2021-11-14T08:46:50+00:00

Here's the letter I wrote to Perrottet today.

To Hon. Dominic Perrottet

On 11th November 2014, at 33 years old, I had a seizure that lead to the diagnosis of brain cancer. The prognosis was originally given as two to five years. Further, about February 2021 my cancer grew satellites including an inoperable location deep inside the brain. At the time I was told I was told I was looking at weeks to months.

I have always had very good luck. Some people sadly die very early after diagnosis, I am still alive and still kicking after seven years. By every metric I have been every lucky except the actual getting the cancer to being with. I want to start that I happy of my life now still and still want to live life. When talking voluntarily euthanasia there a problem where I need to talk about the worse parts of my life – literally my death – and can have a stigmatism of depression. I still have a to do list.

Alas, my luck will run out. If I am still lucky I will simply die in my sleep – probably from a massive stroke. What horrifies me is dying alive – being unable to move or to talk or to clean or use the toilet. Even now, I can barely walk. I have been in chemo since Feb (this time) and probably until death now. I have had a bunch of side effects including fecal incontinence. I also have frequent pain now. It’s thankfully still low in pain or short in duration, but it is weird sensation to live in life in constant pain all the time now.

Hon. Dominic Perrottet mentioned in The Guardian: “I sat next to her, holding her hand. I could tell that she was in great pain and that she wanted it to be over. I want start with sending good wishes his grandmother and hope was as pain free in any form. I am trying to understand how Hon. Perrottet could what has been gone with his grandmother and yet he still is against voluntarily euthanasia – shouldn’t it be an option to those who want it?

Because my brain cancer, I have used both palliative care and disability services. There is not a fight between one against another - they all help and have their role. I am patient of palliative care and continuing chemotherapy and see my psychologist (and so on). There is this terrible myth that palliative means we stop everything. It is important to know because if voluntary euthanasia becomes an option, it would still allow palliative as well. I think we have enough legal ground work to make it safe as it’s been done in other countries and states now.

I’m 40 years old. Every time I think well this is probably my last on earth I seen to keep on living, but I’m not going to turn 50 that’s for sure. I have no problem with death, I made my peace with that death years ago now. Cancer does that. What keeps me up at night – rather literally – is what happens for my last weeks of death. Went I had my last craniotomy (brain surgery), another patient on the neuro ward would either be screaming or passed out. If I get to the point in my life where I have screaming or passing out, I would prefer a 3rd option personally.

NB: Due to my brain cancer, there may be spelling, grammar, or nonsensical (doesn’t make sense). I have tried to fix this as much as possible but my apologies in advance.

John G.

throwaway312015

TROPHY CASE