Warning: this post contains me complaining about my lot.
Not gonna pussyfoot around this; at the moment, when social media acquaintances with kids make a post moaning that their kid is hard work because they won’t eat a family meal / go to bed / stop crying about a toddler slight, or complain that being a parent has stopped them being able to read books / go to the cinema / ride bikes / get pissed, I want to shout at them to shut the fuck up and fuck off forever. “AT LEAST YOUR KID DOESN’T HAVE CANCER-NOT-CANCER, EH” I want to comment on every whinging photo.
Sometimes. Not all the time. Mostly I recognise that having kids is difficult and time consuming and frustrating and emotionally draining whether they’re perfectly healthy or not. We all recognise this going into parenthood, even if we don’t empirically ‘know’ what the actual fallout on our lives will be. How psychologically tired we’ll be. All the time.
This is another moany part. Here’s my fallout.
Prior to kids I cycled about 3,500 miles a year, played football 2-3 times week, took part in two regular record clubs, one regular board game club, maintained this blog, wrote for other websites (and occasionally even print) about music, knew who the players in the England squad were, baked regularly, occasionally went to the cinema with my wife, etc etc etc. Oh, and listened to loads of music.
These days my hobbies are rebooting the wifi, loading and unloading the dishwasher, playing Pokémon Go while I walk to work, and sitting down quietly for an hour before I go to bed. Oh, and administering a long list of medications to my baby who has cancer-not-cancer.
I’m a pretty hands-on dad. I change nappies, I bath the kids, I cook every meal they eat, I wear them and walk them to sleep, I put Nora to bed. That’s been a conscious and deliberate decision. I’ve got a good job but I’ve avoided the kind of careerism that means I need to spend crazy hours in the office. I get home in time to cook tea for the family every day. But I still get a frizz of pissedoffness when I see other dads appearing to have their cake and eat it; rolling in pissed, travelling all over the country for work, cycling as much as they did pre-kids. Add in the illness, and…
When I started writing this post Casper was fine; he’d been well and cheerful for 12 days in a row pretty much, and I was feeling a bit indulgent, guilty even, writing it at all. But yesterday he vomited a couple of times, and vomiting fits are what’s brought us to hospital for many multi-night stays over the last few weeks. This morning he vomited again, didn’t take on any milk, wouldn’t tolerate his meds, and was very much not his regular, cheerful, smiley self. We were due in for chemo today anyway; now Em and Casper will be staying overnight again. He’s had various meds intravenously, a little sleep, and has perked up considerably – enough to smile at his new nurse. So I’m writing these final paragraphs in hospital, and he’s just vomited again; acrid yellow bile because there’s nothing real in his stomach.
These blips – and they do seem like blips at the moment – are to be expected; our child has cancer-not-cancer, and is undergoing mild chemo and relatively aggressive steroids for treatment. Plus he’s a baby, and babies are rollercoaster rides at the best of times, even when they’re not ill. It’s hard to tell what’s his disease, what’s his treatment, and what’s the fact that he’s just a baby.
It’s these blips when I’d say “no” if someone asked if I was OK, or coping. Em and I have both cried and shouted at each other today, as anxiety manifests as anger. I cried while I held Casper as he vomited again in the paediatric oncology unit, as the consultant looked at him with concern in her eyes and commented how he wasn’t his usual cheerful self, and that she’d need to keep him in overnight to make him better. And she will make him better, because the doctors and nurses here are amazing, and even with this stupid rare ‘hipster cancer’ that only 50 people a year are diagnosed with and that no one really knows much about, they know what they’re doing.
You think everything is OK, considering. You wonder what all the fuss is about, the social worker visits and the charity support and the gifts and the concern and the disability living allowance applications. And then you end up in hospital with your baby again and you remember. This is what it’s about. My baby essentially has cancer. We’re going to be doing this again and again over the coming months and maybe years.
My baby has cancer. What are you whinging about? It’s OK. Our suffering doesn’t invalidate anyone else’s. Far from it. You’re allowed to whinge. Just be aware that every so often I might curse you for it.
Sick Mouthy 