Shortly before going on holiday we went to see her doctor together. We went in armed with an A4 sheet of side-effects Julie has been having, and with a little prodding she explained to him how she was exhausted all the time, that wandering to Sainsbury's and back was enough to leave her exhausted for two hours, and that last time she carried a (quite light) basket for ten minutes her arm was sore for three days afterwards.
So he decided to switch her from Imatinib to Nilotinib, which has less side effects. And in order to tell if it was the drugs causing the exhaustion, to give her a two week drug holiday. Which became a three-week drug holiday as we were on actual holiday with my parents at the two-week mark. Which meant that Julie had a lot more energy for Duckerpalooza than she would otherwise have done. Still tired a lot of the time, but not so completely bone-weary that she couldn't cope with people or going out.
The new drugs are still setting in - she has bone/muscle pain a lot of the time, but the exhaustion hasn't come back. She's still tired, but we were able to go out to two things yesterday without it leaving her unable to move today, and then today we went out again to meet more people for delicious brunch at the Safari Lounge.
Having a bit of a social life has been _lovely_, both for Julie and myself. I've missed seeing people, as with Julie's exhaustion and my low mood it's been ages since I've spent much time hanging out with people, and I've really tended to find that I can manage about 90 minutes around other people before I want to go and hide under my duvet. This weekend was a bit of an exception to that, and it's great to have a bit of that back again.
The only big negative so far is that she has to fast around the time she takes the pills - for two hours beforehand and one hour afterwards. Which isn't so bad in the mornings (except that she can't have her tea until she's been awake an hour unless she has it without milk), but is a much bigger pain in the evenings, because she's supposed to have them well spaced apart so we end up eating after 7:00, and some of the other meds she's on tend to cause her blood sugar to drop in the evenings, so she gets pretty hangry if she's not careful.
We're also going to counselling at the Maggie's Centre - Julie originally went along because she was feeling angry all of the time about her situation, and after two sessions her counsellor said "This Andy chap seems pretty important, maybe we should get him in there too." - his name is Peter and he's very observant and experienced in helping people work through things, which will hopefully be useful. We've only had one session together so far, which has mostly stirred things up rather than sorting things out, but from previous experience with counselling this is pretty-much par for the course. Second session is this week.
Other than that, things are pretty-much fine. Work's been keeping me busy, and I've been spending my spare time either playing Hearthstone far too much or playing with my web project. I'm still feeling tense a lot of the time, but I'm working on that, and generally looking after myself as best I can.
So, how are you?
Yes, I haven't updated about personal stuff in aaaaages, because frankly I just haven't been in the mood.
Although it does have a 10% chance of making her hair fall out. Yaaaay!
Both Un-birthday events. For some reason people seem sensitive about their aging process.
No, there isn't anything you can do, but I really appreciate the offer.
Original post on Dreamwidth - there are comments there.