Up until now, I’ve been slowly picking over what has happened in our lives recently, and I’m still about 4 months out of date. But today I’m writing about how things are …today. Because there is a pandemic. A cocking pandemic. As if life wasn’t hard enough already. Jesus. Though in a strange way it’s the most ‘normal’ it has ever been inside our house. Outside of it is this weird, ghostly turmoil.
Ben has stopped work at the NHS. He would be dealing with sick Covid patients, which is just untenable in our current situation. He would have to isolate himself from the family somehow (I mean how. Live in the garage?)
Joshua’s treatment is intensifying (such great timing). So we are having to take him in to hospital for various procedures, but due to covid-restrictions you can only have 1 adult accompanying the patient. If Ben was away from us, what would I do with Louis? I can’t call on ANYONE for help. Not grandparents. Or friends. So that’s that. We’re all just at home.
We took Louis out of school early. Ben had just made the decision to leave work, so it seemed ridiculous to be sending Louis there, given that children are filthy little vectors of disease.
For all of you who are new to isolation, welcome to living with leukaemia! Joshua and I have been doing this for months (never seeing friends, washing hands relentlessly, going rigid when someone sneezes: “get out! Get out of my house!”). But it was just the two of us. So a curious up-side is that we are all together. I mean, I’m not sure I would actively pursue a pandemic to get this positive feature, but you’ve got to enjoy the small benefits that appear.
We had been having a weirdly quiet few weeks at home with no disruption. Apart from not stepping outside the bleddy front door. I mean what is normal now? So I had a sense of impending anxiety about last week where we had to run the gauntlet and go in to hospital. I literally planned the route in my head up to level 6 as if it was a military exercise. I was pretty much sprinting down corridors carrying the heavy lump, Joshua wailing at me to walk: “No. no. absolutely not” and arrived in the unit in a hot sweat. Everything is much quieter than usual. Fingers crossed the nurses are not unconsciously brewing covid. You can’t do the 2 metre thing when you’re sticking thermometers in children’s ears and wrestling them into a blood pressure cuff.
So how is the wee man? He is currently reasonably well, unlike the last few months which have been intense and relentless (more about that later). But on Saturday, he went in to the unit with Ben for a scheduled chemotherapy injection. Unfortunately the nurse had done her sums wrong and administered a dose that was several times stronger than what he should have had.
Emotionally, this was one of the hardest days I’ve had for a long while. They had to stay in hospital for 6 hours to monitor him for anaphylactic shock. Meanwhile, I was at home, hearing about this and failing to parent Louis. Not only are we dealing with cancer and a fucking pandemic but also now an accident that potentially harms my child. All I could do with myself was go into the garden and viciously prune an overgrown hydrangea.
With many nights in hospital I had often pondered how vulnerable and reliant on nurses you are, when terribly sick. I can’t check what they’re doing. I have to trust them. It’s the usual story; a stressed and understaffed ward… but in the middle of an international crisis.
Strangely, Joshua seems kind of fine so far, despite this. He’s had monitoring blood tests and so far nothing desperately bad has occurred.