Hi rarsie, My partner has never had what I would call a seizure. Whenever there is something wrong with him, it is usually related to brain swelling which causes him to feel sick, nausea, vomiting, headache, weak, and bad balance. Vomiting is the sure one for him being someone who hardly ever does it. Hope this helps. ... View more

Ahh I forgot that you live in a small town but I didn't think it's 7 hours from the city. Does the doctor know that it takes you that long for you to come and see him/her and you need a better arrangement? I heard the drug is actually very expensive. Because it is subsidised by the government, they perhaps put in a place a tight control for someone to get access. What appeared to me that our doctor had to ring up to get authorisation code each time he write a prescription for this drug is part of the stupid control. ... View more

Hi Sharon, What you described sounds just like what my partner has experienced with steroid. How weird reading this and get a sense of deja vu. ... View more

Not quite sure what you mean rarsie. We go to a hospital not far from home and get a prescription from the dr. there. We can then either choose to get the chemo from pharmacy at the hospital or any chemists outside the hospital. The main thing seems to be around the dr. getting an authorisation code and write up a prescription. ... View more

Hi Maz47 - sorry to hear this but welcome to the group. I don't know much about your illness as my partner has brain tumours. ... View more

I believe you should discuss your wife's prognosis with her. It's heart breaking and even harder to keep these things to yourself. My partner always looks on the bright side and stays positive. He believes and tells people that he will be around for years. It was hard for me to go along with him knowing that things aren't going to be as bright as he thought or hoped for. I kept all the things about GBM that I read to myself and it was killing me. He could see and feel it and asked me to be honest and upfront with him about how I feel, what I read, etc. We cried hard after this talk but helped me a lot. We agree that things aren't looking good but we have to stay positive. You never know you may be one of the lucky people who happens to survive this. As for the holidays, can you bring the holidays forward? I know it sounds like a stupid suggestion. I've been there before. We had a plan to go to Europe at the end of May this year. It's a trip that we planned for a long time before we discovered that my partner has GBM in August last year. We were positive and believed we could make it. We were suggested to bring our plan forward. I didn't have enough leave days at the time and the timing and season in Europe weren't right so we aimed high and kept the plan. It ended up we couldn't go due to recurrent tumour and spending the money on his drug instead. ... View more

Sandra - I'll keep you post on how we go with Avastin. ... View more

I'm neither in Brisbane nor your age group but partner has GBM for 11 months now. More than happy to chat! ... View more

Is it seizure or effect from high does of Dex? My partner never has this though. The closest thing he had was carpel tunnel syndrome like on his right arm while he was on 16mg Dex which had slowly disappeared once the doctor decreased his dose. ... View more