Monthly Archives: August 2020

Back to nursery

Today Casper did his first day at nursery since covid-19 tilted the world off its axis.

He’d only just settled again after the Christmas break when he had to stop going, when we started shielding. A lot has happened since then. Devon seems to be managing the disease better than the rest of the country. Both Casper’s condition and his medication (still twice a day, every day; still working) have been downgraded, so we no longer have to shield. I have worked from home, been furloughed, and am now partially furloughed and working again, three days a week. Nora managed to go back to school to do the last few weeks of her reception year. I had many detailed conversations with his medical team about community transmission rates and infection control and risk vs reward.

He sauntered down our driveway to the car this morning, telling me he was “going to nursery to play with my friends”. I was so proud. When we got there, of course, he cried, but apart from not eating lunch and being a bit sad after his nap he had pretty happy day apparently. I nearly cried on the drive there, as it occurred to me that – aside from the last couple of Tuesdays, when he’s been with grandparents – I’ve looked after him (and his sister) all day, every day, for the last six months.

And then, when Em told me at lunchtime that he’d be going to nursery again tomorrow – which I kind of knew on an intellectual level but clearly had not processed emotionally – I cried in the kitchen.

I’ve had prolonged, close care with Nora – two summers ago, when this all kicked off and he was in hospital all the time – but not with Casper, and I’ve cherished it. Obviously not every second – circumstances have not been easy – but for the most part being primary carer for my children has been wonderful. Especially Casper, for two reasons; two is a fun age, and also because, for so long, we had that paranoia that we wouldn’t have this kind of time with him. Em always used to say that she felt he was temporary, that he was only loaned to us when he was a baby. I must ask her if she still feels that way. Dark moments come every so often, but they’re fewer and further between for me now (especially since the waking nightmares about drug supply chains have dissipated after the first few months of covid-19). I feel like he’s going to be with us for a long time now.

The portrayal of childhood cancer in BBC hospital drama ‘Casualty’

Catchy undergraduate essay title, huh?

Em and I watch Casualty most Saturday nights. We have since we first moved in together. It’s something we both watched as kids, and it’s a little bit of routine, something to turn your brain off too (but not too much). We’re not religious about it – if we wanna do something else, we will, and in the age of streaming TV we often actually watch it on a Sunday or a Tuesday – but it’s an easy choice when faced with almost infinite options.

Watching the childhood cancer story unroll over the last few months has been… odd. Like, I imagine, many medical situations, it is being played for drama rather than realism. It’s not exactly triggering to us, but it is frustrating, because it doesn’t chime at all with our own experience of Casper’s cancer. Here’s just a few reasons why.

• Childhood cancer for most families means lots and lots of (expensive) travel. OK, so Faith and Lev both work at a large city hospital, but they’ve never had to go anywhere else. They even had a magic foreign super consultant fly over to them. They’ve never had to spend a night away in a house run by a cancer charity, for instance, or set up a ‘go bag’ that they leave by the front door in case they need to rush to hospital in the middle of the night with a temperature.
• Neither Lev nor Faith have taken any significant time off work to care for their ill child, and they regularly leave him on his own in a paediatric oncology ward for lengthy and uncomfortable chemotherapy sessions while they work. I have never – not once – seen a child left alone on a paediatric oncology ward for longer than it takes for a parent to go to the toilet. And in most cases two parents have been present most of the time, especially in the early, intense days.
• There’s a LOT of waiting involved in any cancer treatment. A LOT. Not for a course of treatment to begin necessarily, but just waiting… for the consultant to see another patient, for the nurse to arrive with the chemo gear, for a cup of tea, while treatment actually happens, while your child is in the operating theatre, etc etc etc. It’s oftentimes a very boring process. I know we’re dealing with a 50 minute weekly hospital drama, but they could have made a not towards this. Time passes quicker with a montage!
• The consultant was one of the least supportive and empathetic character I’ve ever seen on television. Ours have been nothing but caring and kind. Not once have we had a meeting with a consultant about our child’s health that took place across a desk like a scary job interview. I once cried my eyes out in a hospital school classroom while the consultant gave me a hug. Stony-faced paediatric oncologists don’t exist in my experience.
• Proton Beam Therapy – the magic bullet that seems like it might offer hope of a cure for Luka – is only actually available (as far as we can tell from google) at two hospitals in the UK: in London and Manchester. More travel. Yet Luka seems to be having it in Holby, during Lev and Faith’s normal working day. I understand the logistics and drama of TV programmes, but honestly the travelling and expense thereof (and all the sandwiches you buy) are some of the most emblematic (and problematic) things about childhood cancer. We were fortunate not to need to travel much, and I was still up and down the M5 to Bristol an awful, awful lot.
• Who’s looking after their other kids? What’s happened to them?
• Not a whiff of a social worker or a counsellor.
• Or their extended families.
• Or drug companies, research trials, medical journal articles, etc etc. Luka’s cancer, like Casper’s, is rare and weird.
• Or, and this might be the most egregious absence, the level of charitable support that is not just available and offered but symbiotic with and essential to the ‘standard’ NHS care. Exeter’s paediatric oncology ward would not function remotely like it does without the CLIC Sargent nurses and social worker. There is not enough money in the system (and yes this is political – fund the NHS not just adequately but SUMPTUOUSLY, sod HS2; make massive global corporations pay their fucking taxes) to provide proper childhood cancer treatment and support, so the system is propped up by charities. Don’t get me wrong, I am VERY grateful for those charities, but that they need to exist in the first place is a disgusting failing of our society and economy. Casualty’s been quite full-on about NHS funding in recent times, and this seems like a missed opportunity to hammer that message home again. As a parent of a child with cancer I wouldn’t be offended at childhood cancer being used as a crowbar for a political message – I’m offended at it NOT being. Cancer is political like EVERYTHING ELSE in life.

I appreciate that Casualty is a drama about the people and trauma encountered in a hospital emergency department and not a drama about childhood cancer. I also appreciate that our experience of childhood cancer is not universal – everyone will have different experiences, and perhaps for some the plight of Luka and Faith and Lev will absolutely ring true. But it really doesn’t for me.