Oh onlyjoking - just seen this thread ... I'm sorry. I know EXACTLY what you're going through as we were told the same thing back in April. They weren't sure if it was grade 3 or 4 but decided to assume it was 4 and hit it hard. On that basis, we were given 2 years, with treatment. Months without. It is awful, sickening, just horrific. But DH was determined this wasn't going to get him so this is what we did:
Got all our affairs in order ... got wills sorted out, talked about funerals (only very generally, not planning them), made sure we knew what would happen re: life insurance, mortgages etc (... check out if you have any critical illness cover on things like endowments as a grade 4 brain tumour is covered by that - better the money is out and invested even in a bank than taking the chance of the endowment paying out at term), talked to his work HR person so we understood what would happen if he couldn't return to work, etc.
Cancerbackup is an excellent site -we got all our info from there. About statistics and positive stories ... they are hard to find (I know cos we looked) but you need to remember that so many statistics for cancer seem to be in 5 year blocks ... so even for a low grade glioma you'll find life expectancy at 5 years +. If they go in aggressively with chemo/radio, it can do amazing things.
Ask your oncologist about temozolomide chemo alongside the radiotherapy. It is specifically for high grade tumours and you need to take it about an hour before the radio. The statistics were something like traditional radio/chemo gave you a 22% chance of living to 2 years, but this pushed it up to 45%. Still grim I know, but better.
Getting set up for the radiotherapy took about 3-4 weeks ... frustrating but they've got to get it right.
There's also a drug called clomapramine ... it used to be an anti-depressant but not used so much now as there are better more modern equivalents, BUT it is being tested as there is unproved but anecdotal evidence it could help destroy brain tumour cells. DH tried it when doing radio/chemo but it made him feel terrible and he started twitching (we first found out about his tumour cos of seizures) so he had to stop taking it. He might try it again now the radio has stopped. So ask about that ...
We also got a decent juicer and he has a big load of juice every day. Into that he mixes something called Coriolus powder which comes from mushrooms (coriolus mushrooms??). Anyway, we have friends who have a business that makes all kinds of complementary medicines and they'd heard about this. Apparently it's widely used in Japan and countries like that. It is supposed to boost your immune system so that your body can fight cancer cells better. We have no idea if it works or not, but DH went through the 6 weeks of radio/chemo and his blood counts stayed either constant or only dipped slightly throughout, and whilst we've all been plagued with colds, he hasn't had even a sniffle. He still has this every day.
People will tell you that you should think positive. I think they're right but then you feel guilty like you're going to make bad things happen when you think about them dying. You have to think about them dying because that's the reality we're facing but you and dh should remember that he's still young (certainly in brain tumour terms!!), he has a lot to live for, surgery has got rid of a lot of it and chemo and radio will get rid of even more. Statistics can play with your mind ... all you see are the averages and you need to remember that to get to those averages, there are people who have lived way beyond the average. There is absolutely no reason why your dh isn't going to be one of those.
Sorry for the long post ... I just wanted to brain dump all the info I had in my head for you. DH also found a really good booklet about brain tumours. I'll dig it out and email it to you.
Sending you lots of love xxxxx