I wake at 2am which has been fairly consistent since this whole thing started but am able to rest and even snooze a bit until about 6am. I decided to completely stop drinking alcohol after Mother’s Day to give my body the best chance to fight Big Betty and am better rested because of it. Susannah and I chat lazily, spoon a bit and then I get up to make coffee. When I come back I can tell she has been crying. We talk about all the things we like to do together – go camping, kayaking, explore, go to the beach, travel in the van. Susannah tells me she had a moment while shopping at Kathmandu yesterday. She’d been looking at the camping gear and that hit her hard. We camp. We camp a lot. We have a converted van and like to get away when we can. What if we can’t do that anymore? We make a decision to try to do as many of the things we love as we can, when we can, if we can. We will not let Big Betty ruin whatever time we have. And, if I do beat this and we have longer together, we will move forward in the same way – make the most of time. Life is short.

God, I love this woman.

I have suffered from chronic back pain since I was 22 and have had 3 surgeries and numerous procedures, the last surgery in September last year. Years ago I created a gaming avatar called Sciatica that represented me with chronic back pain. I played as her when I felt particularly hostile. It helped me cope. While unpacking boxes today I find a pair of staunch “cop” sunglasses which Susannah has never liked on me, put them on and say, imagine how I will look with no hair! Susannah suggests that this character I’m portraying should be named Carcinoma. I find that hilariously funny. I keep the sunglasses.

The sun comes out for a bit and we busy ourselves outside, moving pots and planters, making the deck look tidy and creating potted garden spaces. It feels great to inhabit our space and I even manage to forget for a little bit.

We have a few visitors but nobody stays too long or says too much. My sister K and her husband H drop by and it’s lovely to see them too. K’s eyes well up a bit at one point, but she keeps it together and we converse as normal.

Later Susannah and I have fish and chips upstairs with Mum. We don’t stay long. It’s been an exhausting day, but quite a nice one.

Fun times start tomorrow.