Thought I'd check in, it's now been 8wks since my husband left full time work after tumour recurrence and I've just helped him to bed.
There is very little he can do cognitively for himself, using a kettle, phone, emails none of these he can do without support.
I now wonder how long this current stage will last. He has virtually no short term memory and unable to lay down new memories. He still has an appetite but appears to have lost a lot of weight. He doesn't really want to do much and today he watched a bit of TV or just sat in a chair. He doesn't really talk unless I talk to him, the majority of his responses don't make any sense. He has become more unsteady on his feet.
He is due to have chemo in a couple of weeks depending on bloods.
I don't think it's even possible to plan to go anywhere or do anything with him, just very sad to see him like this and the decline is so rapid.
Hi Slh
lovely to hear from you and I'm sorry that you are seeing things decline. A GBM journey is a cruel one on all involved.
I can only base my thoughts on my experience with G's journey. I've likened it before to like going down a long staircase. He would decline a bit then plateau for a while then decline then plateau. It is so hard to watch their capabilities fail piece by piece.
The key thing is to keep him calm about everything. Take it one step at a time. If you are concerned about any symptoms or changes at all, call them out to the medical team for your own peace of mind as much as anything else. I worked to a three strikes and I'd call it out rule (if I saw it 3 times and it worried me, I'd raise it.) If he does seem agitated at any point, call that out too as the dr can prescribe something to ease that.
Be gentle with yourself here too. It is a huge amount for you to cope with so please don't underestimate the impact its having. You're not alone. We're all here for you. If there is anything I can do to help, just ask.
Sending you love and light and strength and hugs
Wee Me xx
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