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