Very cool, if true

We are on holiday for two weeks.

Which is basically four days with Julies family in Northern Ireland, and then eight days with my family in the Lake District, for DuckerFest 2015.
( Cut for pics. Of dogs. And pretty countryside. And boats. )

Any update about me starts off, of course, with Julie, because my mood is rather contingent upon her well-being.

Shortly before going on holiday[1] 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[2]. 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[4] 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[5]. 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[6].

So, how are you?

[1]Yes, I haven't updated about personal stuff in aaaaages, because frankly I just haven't been in the mood.
[2]Although it does have a 10% chance of making her hair fall out. Yaaaay[3]!
[3]Not Yay.
[4]Both Un-birthday events. For some reason people seem sensitive about their aging process.
[5]Finally got everything converted over to the Angular way of doing things, and am now digging into Gulp to see how Javascript build systems can help.
[6]No, there isn't anything you can do, but I really appreciate the offer.

I went out last night and saw some friends - widgetfox, danieldwilliam and his lovely wife. It was a good evening - relaxing conversation which was just what I wanted.

And I left it at 9:30 vibrating quietly on the inside, headed home, and ended up having a long conversation with Julie about that, about how we're both doing mentally, and why it is that even though I've not really been doing much recently, I still feel exhausted all of the time, and my social skills are not up to their usual standard.

Then I spent an hour lying awake feeling horribly stressed in the middle of the night (I think, it felt more like three hours, but I only feel tired enough for it to have actually been about an hour). And this morning I thought of the perfect metaphor for where I am.

You know that feeling you get when you're waiting for someone who's in surgery[1] - where you're sitting there in a waiting room, trying to do anything you can possibly do to distract yourself, to ignore the huge thing that's going on that you're completely powerless to do anything about? Where you can mostly distract yourself on a surface level, but every so often the worst possibilities pop up in your head, so you pace back and forth for a bit until the nervous energy passes, and then you can sit down for a bit and read something light[2], and even make some conversation[3] for a while, before the possibilities bubble back to the surface for a while.

That's where I am. I'm sitting there, waiting for the doctor to come out and give me the news.

And I have been for a few years now. Because this at least partially predates the cancer diagnosis. It goes back all the way to Julie's illness that started six months before the wedding, when the PhD went from "Almost over, and it's been delayed, but at least it's nearly done now." to an indefinite path fading into the horizon, with the life we'd been looking forward to starting receding at the other end of it, vanishing slowly into a grey fog.

So when people speak to me, I answer. And I have conversations. And I still do well at work. And I see people. And sometimes I even have a good time. But I never really feel like I'm quite actually _there_. I'm there for brief moments of distraction, and then I turn away from the bright lights, and I'm back in the room. Waiting. Slowly vibrating, and intermittently pacing back and forth[4].

Some day my waiting will be over. I look forward to leaving the room then. Until then, I'm sorry if I'm distracted, or short, or less organised than I could be, and if I see you less than I would have done a few years ago. I miss it too.


[1]Or in seeing their doctor, or otherwise off elsewhere going through something while you wait for them.
[2]Although it usually has to be read four times before it goes in.
[3]Even though, in the back of your head, is a feeling that whatever the conversation is about is much less important than what's going on in the operating theatre right now.
[4]I'm not convinced there's a lot I can do about this. I've had some counselling around it, which helped me deal with some issues that were getting in the way of Julie and me communicating well, and me looking after myself. But unless I walk away from the waiting room (which I am not doing, because my wife is in there) there's no way of getting rid of the stress, and the feeling that everything else in the world is less important than what is going on in there, outside of my control. I lay there last night for ages, thinking how lucky I was to have her, and how she'd transformed so much of my life, and how, if I lost her, I'd almost certainly have missed my chance to have the kind of life I now wanted, particularly to have children, and that she had all these amazing attributes that I'd never find all at once in someone else - her approach to life, her way of thinking, the things we both love doing together, and the thought of starting again with someone else, and building all of that up again just made me feel nauseous. I'd do anything not to lose her - and I know it's not actually that likely, but that doesn't help at three in the morning in the dark.

Julie got halfway through stirring together some chocolate cake mix, and had to call me in to finish it off.

As someone who desperately misses things made with either gluten or sugar, this was awful. I had to keep checking I wasn't drooling into the bowl. And resisting the urge to just plunge my face into it.

On the plus side, I finally found the time to try out my Raspberry Pi - it works perfectly with XBMC, and streams HD MKV files without a glitch (the PS3 and 360 don't support MKV). The Dexter opening sequence never looked so pretty! I need to pick up a remote for it though - controlling it with my phone is all well and good, but a device with physical buttons would be better.