Monthly Archives: December 2018

Can’t think of a title

I remember conversations about what it was like to have two kids in the early days of Casper, and the conversations we had with people; is it twice as hard having two? Harder? Not that hard? And I remember my comments revolving around how yes, it was hard, but at least that level of first-time-parent anxiety had evaporated, the constant low-level worry about what does this mean, what happens next, what do we do now, and so on and so forth. I thought that second time would be a easier in that respect, that this time around we’d enjoy it more because we knew to have saline nasal drops in the house so I didn’t have to rush out at 10pm and trawl across Exeter trying to find anywhere open selling them, and so on and so forth. Because we’ve done this all before, so we know what we’re doing now. Surely?

Foolish, much?

We are two steps forward, one step back at the moment. Which means we’re still in a net better place now than we were a month ago, but it’s not straightforward. Casper’s bloods aren’t chronically low anymore, he is pink, we’ve negotiated the removal of the nasal-gastro tube as he doesn’t need it for nutrients anymore, and we want to see if he can gain weight through breastfeeding and weaning. He is more cheerful, happier, more alert, and (occasionally) sleeping slightly better than he was. He’s not done an overnight stay in hospital in approaching a month. These are all good things.

But last week his potassium measured high, which is worrying. It turned out to be nothing; a slightly clotted sample because it was drawn from a heel prick rather than his port-a-catheter. This week his calcium is raised, which can be a side effect of the dabrafenib (reported in 2% of cases). It could be influenced by other things too, but it needs managing. It meant he and Em were in hospital until midnight on Friday to have an infusion to balance his calcium. As Simon the consultant says, his job is about managing side effects. That’s what oncologists do. Nothing is ever simple with Casper. His calcium is normal today.

Last week Strava sent me my annual summary. Pre-Nora I used to cycle between 2,500 and 3,500 miles a year. Even when we just had Nora I used to manage around 2,000. This year I’ve managed 199 so far. The Christmas tree is up. From Friday I have three weeks leave, the longest break I’ve ever taken. I’ve arranged myself some counselling through work. This is what life looks like right now.