Thanks - Min, Jobeth and Melanie - I suppose the hard thing for us is the precedent of being a bit blaise about the condition that has been us since the first tumour. We only had our oldest at the time, and she was around for everything, but I don't remember knowing how serious it was with the astrocytoma - when he was diagnosed this time a friend said to me that last time we were told 3-5 years and I really couldn't remember being told that (I'm still not convinced that I was told that, this friend's wife is a nurse and probably did the research). My husband had no symptoms with that tumour, no headaches, weakness, speech impediment (except minor slowness after the attempt to remove it which resolved really quickly). The symptoms that led us to check it out were minor 'vague spells' that he described as feeling similar to deja vu. When I gave his history when we went to hospital with this tumour and told them he had a grade 2/3 (and some characteristics of grade 4 that didn't show up in the pathology but observed when they were looking at it) astrocytoma the doctor laughed at me and said it couldn't have been, or he'd be dead now. We have been monitored by a neurosurgeon (not the one who did the op - which is another story) ever since, we were on yearly MRIs and we were so sure he was going to be fine, I didn't even go to the last appointment with him two years ago - again another story. Our NS always said to us that we'd know before he would, and that it might come back or it might not, that it might have been there his whole life and just started rubbing on something to cause the mild epilepsy. As I said, no symptoms, he did the radiation, wasn't offered chemo, took an extra three months off in which he worked around the house, and as soon as he got his licence back, which was six months to the day after the diagnosis he went back to work.
He always told the kids that the scar on his head was because there was a crazy monkey in his head and when the doctor tried to take it out it bit him on the finger so he closed it up and just to hope that the monkey kept behaving himself. They know it's not a monkey (now - but they all believed this story till mid primary school, one even told it for news) and they know he is sick because they can see it. The weakness is obvious, his speech has changed, although it has also improved a little, he sleeps 12 hours minimum a day, and all he does is watch TV (when he only ever did that if it was raining and he couldn't be outside).
We answer all the kids questions but they don't ask the difficult ones, and because he isn't talking about it or acknowledging the prognosis, we aren't talking about that. We're really open as a family, don't shield the kids from much at all, in fact there is just about no censorship in this house at all, just a lot of ostrichs :)
He did see a counsellor when we were in sydney having treatment, and later told me that he wanted to talk to someone because he was worried about me if things don't go well, but that he felt like they would. He used the rest of the time to get recommendations for where to go for dinner, what to visit if we get to the UK, and a few other things that had nothing to do with the tumour. We need to talk about it more, me and him, and as a family, but there is a comfort from ignoring the elephant in the room that I only learnt during the first tumour, and almost wish I didn't know the truth this time.
