Hello, I came on here a few weeks ago as a new member. My husband has a grade 4 Glioblastoma which was diagnosed 18 months ago. He had surgery in March last year then radio and chemo. He was stable
ntil April when we found out that the tumour had grown back and was much larger. Steroids kept it stable until four weeks ago when the change was quite severe. He is now in a hospital bed at home d it’s been such a shock to our lives. Having to get used to carers, nurses and different equipment in our home, even though they are needed and so appreciated. Today has been one of the worst, ty tell you what will happen and that he’ll be confused and disoriented, but nobody tells you how to deal with it or how to cope with it, I’ve felt so lost and desperate today, seeing him get so upseand agitated and not being able to help him has been awful
Hello Magimoo
I am very sorry to hear about your husband's glioblastoma.
I can understand that it must be very hard to see the decline in him. I hope that it is of some comfort that he is at home, even if he is in a hospital bed and needing all the equipment and carers visiting. It must be difficult for you even though they are needed and appreciated.
Even with knowing what could happen the reality of seeing him confused/disorientated must be a shock. I hope that the carers/nurses are also offering you support and that you feel able to talk to them about how you are feeling. I can understand how it must feel awful for you when you feel you can't help. I hope that you family around to help support you both.
If you feel talking to someone would help then please consider giving the support line a call. They are lovely on there and will just listen if that is what you need.
Jane
HI Maggimoo
so sorry to hear that things have taken a downward turn. I'm in the same boat right now. G got taken into the local hospice last Wed and was allowed home on Friday. His seizures were/are out of control. He collapsed on Saturday (daft bugger tried to go for a run when my back was turned and a neighbour got him collapsed on the pavement nearby) so he was readmitted. We'll see what today brings...
Stay strong. This is horrendously hard but you are amazing and don't ever forget that. Take this one step at a time. Breathe.
Sending you a huge virtual hug and lots of positive enegy.
love n hugs
Wee Me xx
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