Where do I start? He's mobile enough to help here and there a couple of times a day; but mostly just ambulatory enough to get in the way. Often times, he thinks he is helping but is doing something just a bit silly that needs undoing and then doing properly. He can't remember many things, nor say many things properly. I get frustrated because half the time I don't know what he's on about, or I am just trying to ignore what he's saying so I don't start getting wound up. He's frustrated because he can't seem to get anything right.
His symptoms are increasing each day and the wait to speak to oncologist next seems like an eternity, even though it's only two more days. And what then? I mean it isn't like the doctor is going to have some magical solution to the problem. Maybe change him from dacarbazine to ipilimumab.
I worry for the future, though I know I shouldn't. But we are struggling so much now, I am scared of what will happen when it's worse than now. It's already hard work for me, scary for the little ones, and depressing and frustrating for him.
I feel helpless and hopeless and sad today. I so want to know what's around the bend - to prepare and sort and get ready as best as possible. But there isn't an answer to that and I am unprepared and unaware of what's coming.
I hate to actually admit this, but sometimes I think he is really playing things up. Especially when his parents or brothers come round. He preks up, wants to do housework (while they're here) wants to engage and walk about and make coffee and tea for everyone. But when mates want to come to see him he says he can't; he isn't up to it, etc. And when it's just the two of us he is asleep at least 50% of the time and is barely with it at all the rest of the time. I shouldn't think these things. I should just be glad he feels better when he sees his family members. But I am feeling resentful today, among other things.
Another bad thought I have had a couple times this past month is that we have only been together for almost two years (2 years in November). Things started breaking down a year ago, but we held on and tried to focus on resolving our issues. Then 5 months ago this all starts.
All thw work I did to build this family up (before John) after such a traumatic experience in another place. In the beginning John helped to strengthen the "new life" and really solidify a sense of stability and security. And now this. Slip-sliding backward.
I'm all over the place today. Just want to crawl in bed and never come out.
