People who are tangentially aware of what’s happening with us, but not really immersed or in direct enough contact to know the full details, often seem to have very different expectations of what daily life is actually like when your baby has something like cancer. Someone asked Em a few weeks ago if Casper was conscious, as if they were imagining he was on life-support or something. He isn’t!
For instance, I took him with me today when I dropped Nora at nursery, which is on the university campus where I’ve worked for 16 years now – being the type of person I am, I know a lot of people on campus, and unsurprisingly bumped into several. Some knew what was going on to one extent or another, some had no idea; all were very pleasantly surprised to be greeted by a smiley seven-month-old baby strapped to my chest.
So what is daily life like at the moment? Here are some bullets…
• Because Casper’s on steroids, he’s not sleeping very well – also he’s a baby! – so he’s sharing Em’s bed (our bed) so she can feed and comfort him easily in the night, and I’m in the ‘spare’ room. I’ve been in the ‘spare’ room for much of the last four years, since the tail-end of Em being pregnant with Nora, so that’s not unusual.
• I wake, sans alarm, at pretty much bang on 5:55am every day. Nora comes into my room at 6:15am when the sun comes up on her clock, and watches CBeebies on my phone until she can convince me to get out of bed – usually about 6:45am.
• We go downstairs and I make breakfast for everyone; if Casper’s sleeping him and Em stay in bed, if not I bring him down with us to give Em chance to get a little more rest.
• He’s weaning at the moment, so I might give him a bit of banana to smear over his face and the table. Once a week I’ll make waffles. I make Em porridge most days. Nora has cereal, I have egg (and something – whatever’s in the fridge) on toast.
• Casper has meds three times a day: morning, afternoon and evening he has steroids, and morning and evening he has anti-sickness drugs too.
• (Chemo is once a week, usually on a Thursday, and involves a trip to the local hospital in the morning. We’re normally there a few hours while he has blood tests, the consultants and nurses check him, and, depending how he is – at the moment he is well, and not manifesting as a poorly baby really – pretty much everyone on the ward will coo over him, because he is cute as hell.)
• Other then chemo, all his meds are delivered orally, through little plastic syringes. I give him most of his meds, as Em finds it too stressful. He loves his steroid medication, but will struggle with the rest, which makes it emotionally pretty tough.
• I take Nora to nursery 2 or 3 days a week (Wednesdays and Thursdays, and Tuesdays too from next week on), so we leave at about 8am. I’ll be back about 9am.
• And then…
Beyond that there is no normal. Em and Casper have been in hospital 28 nights out of the last two months or so, sometimes for stretches of a week or more, sometimes just for a few nights. We’ve never really managed to get into a proper routine; each time we’ve been close, Casper’s had a vomiting bout and been hospitalised, and everything has gone up in the air again. Even when it hasn’t, life has been unusual – nursery was closed for most of August, for instance, and Em and I have had to figure out how to live together, how to talk to each other, how to deliver medications and organise our life with cancer, and the bits of our life that exist outside cancer too. Just getting out of the house together in the morning to walk to town can be horrific. Difficult enough in normal circumstances.
I still try and get tea on the table at 6pm every day, whether it’s the whole family or just me and Nora here. Once Nora’s in bed and the kitchen is (close to) tidy if it’s just me I’ll watch a film, or if it’s me and Em and Casper we’ll watch Queer Eye or something. (Casper goes to bed when we go to bed, because steroids.) (the last few nights he’s been delightfully cheerful and 7-month-old-odd in the evenings – there are these strange moments of baffling parental joy amidst everything else).
Tomorrow Em’s parents pick Nora up at 9am to take her out for the day, while Em and I take Casper to Bristol for an operation to replace his Hickman line, and then to have this week’s chemo on a Friday, because his line isn’t working at all anymore (hence the operation). Depending how that goes, the weekend could be spent at home, taking Nora for bike rides and helping Casper recover, or it could be spent with us apart as a family again. I just don’t know.
It’s very difficult to plan anything. Last weekend I did the first proper weekly family food shop I’d done in I don’t know how long. Luckily almost all the meals I had planned I’ve been able to make. But not the halloumi and rocket sandwiches that were meant to be for lunch today, because Em and Casper decided to meet her mum for lunch, and I tidied the garage and playroom, because builders arrive on Monday to remodel our extension – something we’d planned and taken a loan for before this all kicked off, and which was intended to make family life easier and more cohesive. Easier and more cohesive are things we need more than ever right now, so we’re ploughing ahead with it. Em and Casper will go and live with Em’s parents for the first few days while stud walls get taken down.
Casper’s treatment is going to take one or two years depending which side of the trial we go down. Maintenance will involve chemo every few weeks, and other medications pretty much every day. With luck the flare-ups and vomiting episodes will abate, and we can be metronomic with his treatment, with family life, with the pattern of each day.
But we always have to be ready to improvise, to change tack. To prevent a crisis becoming a catastrophe.