“He came. He set up the TV. And he was gone again”
Just a week and day after arriving and Bern has left us again.
I knew it was on the cards. That’s Navy life. But I thought if I put my fingers in my ears and hum loudly, he wouldn’t have to go to South Korea for three weeks.
We made the most of the island weekend in a sea of separation. Despite not being able to go anywhere until our family car arrives on the ship, we got creative with the local buses and had a couple of outings. Hooray too for the local chip shop being within walking distance. The kids consider it a huge treat. I’d forgotten about ‘chicken salt’ that Aussies smother over their chips and have to confess, I’ve become a bit of an addict myself.
But I mustn’t let chips distract me from the story.
Life has returned to temporary normal with Bern starting work on Monday. I think the amount of hours he was there playing catch up has prepared me for this next departure. It’s been a big week for him. New job, new work place, new rank, ‘new’ country. His predecessor has long gone so he’s self-managing his handover. And preparations for the Korea trip have competed with the million and one admin tasks associated with starting a new job.
I’ll miss him. Again. Of course I’ll get by. I’m a big girl, but I was getting used to him being around. I like that he’s on the end of the phone if needs be. I’m comforted by him being less than an hour away things go wrong with Benny.
I worrier, I am not. But unusually, an anxiety cloud has been hovering over me all week. I ponder over how things will work out if I have to rush Benny to hospital at a moment’s notice. We knew the drill at Kingston Hospital so well, it had become almost palatable. But Canberra is so new. We are really fortunate to already have a handful of wonderful people who have offered to help. Perhaps it’s just fear of the unknown, but I’m not relishing the inevitable (albeit, less frequent) trip. I know every hurdle can be overcome, I just want Bern around to jump over them with me.
But it’s not just the thought of an unplanned trip to hospital that’s stressing me out this week.
It’s knowing that children with cancer can burn really easily in the sun. We met a family at the Marsden in the early days, whose child was covered in burns from the weak British sun, despite being smothered in Factor 50. But I have to take Benny out. The school run won’t do itself. I love to walk, but the hour-long round trip, twice daily in searing 30 degree energy zapping heat isn’t the best fun I’ve had.
And it’s trading off the urge to smother Benny and the others in kisses and cuddles so I don’t pass on my streaming cold, and potentially put Benny in hospital while Bern is away.
It’s the inaccuracy of Benny’s daily chemo dose. They haven’t planned for him, so the kid-friendly chemo syrup isn’t available yet. Instead, we are butting together adult tablets to get the correct dosage. So he’s on 3/4 of a tablet here. 4/5 of a tablet there. Different dosages each day to make up the correct amount across the course of the week. It puts me on edge.
It’s the prospect of the day trip to Sydney on 9th March. It’s a really simple Lumbar Puncture operation and frustratingly, in a potential 16 hour day, he’s only on the slab for 10 minutes. Quite frankly, I could probably do it myself, it’s just a glorified epidural. Come on! Don’t people have babies in Canberra?
I’ve been talking to and emailing our Leukaemia nurse from Sydney to sort out the logistics. She’ll be managing Benny’s treatment over the next 3 years as she takes responsibility for families in rural areas.
We live in the nation’s Capital for goodness sake.
Let’s just say, I didn’t take to her. She’s happy to mother me over trivialities, but side-steps the big questions. OK, Big Smoke Nurse, here’s the deal. I’ll conceded that Canberra is rural if you stop treating me like I’m the village idiot.
I mean, heck yes, I’d love to flip Benny to the Australian protocol. No Lumbar Punctures in Sydney quarterly? Yes please. No monthly trips to The Canberra Hospital for chemo? I’ll have some of that. No grumpy boy steroids? Absolutely. Just pop a chemo pill each day and we’re sorted? Sounds like leukaemia heaven to me. But (and it’s a BIG but), I’m not agreeing to it, just because that’s how they do it in ‘rural’ areas. No way. We’ll be having a rigorous three way discussion between ourselves, our UK consultant and our new consultant, thank you very much.
Imagine the anguish years down the line if Benny’s leukaemia comes back just because we’d taken the convenient pathway. Just because that’s how it’s done here. I don’t think so.
Despite the week’s angst, I love having my Benny back. He still manages to wheedle Kinder eggs out of me each time we go shopping. I laugh at his ability to charm little old ladies on busses. I’d missed his squeaky voice and the earnest way he puts words together. I’d forgotten how he buts himself so close to my arm when we’re on the sofa that I can no longer work on my computer. Best of all, I love his surprise cuddle attacks when I’m cooking dinner.
Having a 5 week break from being a leukaemia mum makes me aware of how much anxiety comes with the job. I hadn’t spotted it. I’d just been in the trenches getting on with it. And now, after my holiday, I’ll get my head back down and get on with it all over again.
Photo: Home, sweet home, after the final school run of the week.
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