Hi there,
I found this group through Penny's website and she emailed me the link to join. I have been reading through the posts hoping to make some sense of the position we find ourselves in since my husband's supposedly benign frontal lobe tumour turned out to be the hideous glioblastoma multiforme. He had his surgery 4 weeks ago at Waikato, and it was much more invasive and difficult than they were expecting. Because of how major the tumour was there were complications, such as stroke symptoms and quite serious mental/cognitive impairment. He has taken a long time to come right, physically he is doing better day by day, but he only really started walking about a week ago, and that is still precarious as his balance is not good and he struggles with it - he is using a frame successfully right now but can only do short spells at a time. Cognitively he is there but not, if you know what I mean....apparently this is a hallmark of frontal lobe brain injury, emotionally things arent firing and impulsivity is constant. There are also major issues with continence, that hasn't worked itself out yet either.
We are meeting with the oncologist again on Wednesday but as you will no doubt know, treatment is palliative only. They have had to delay the chemo and radiation because of my husband's slow recovery- he needs to be in a place to withstand the treatment first.
I am having trouble structuring this post, I still can't believe we are living this nightmare that is our lives right now.
I have been struck by how little support there has been via the hospital system and how little I feel I can do at this point. We didnt have income protection insurance so we have serious financial concerns right now too. I feel like there are no silver linings anywhere right now and am struggling to find an optimistic slant on anything. The fact that my husband might not recover mentally in the short time he may have left is another blow- I feel like I have lost so much of him already. We have two young kids (nearly 5 and nearly 13) and I am feeling incredibly sad about what they are having to deal with too, it all just sux really!!!!!!
Sorry this is such a negative post, I have had a bad day today and should probably have turned the computer off and tried to get some sleep, only sleep often doesn't come!!!!
Any ideas or advice would be welcome
Linda