Waiting

I’m still feeling somewhat shellshocked from Beany’s cancer diagnosis. I almost don’t quite believe it, as if I’m waiting for the other shoe to drop and someone to give me more information.

As if there were more information to give me, beyond what we’ve already had. There is a lot of information out there for such a rare cancer (only ten kids are diagnosed with Hepatoblastoma every year in the UK) and Facebook groups full of parents who have gone through the same thing or have been through the same thing.

It doesn’t make me feel better.

I’m waiting.

I’m waiting for it all to become obvious or for…something to happen. But it has happened, it is obvious, Beany has been diagnosed with cancer, she’s had chemo, she’s spent almost a month in hospital since all this came to light. What else is there?

I think because, since she’s been home, she’s been better. Not 100% but better than she was before she went into hospital that Monday throwing up and constipated. She’s been chatty, climbing, laughing, driving me bloody crazy. The cancer isn’t obvious, she’s not lost her hair (yet) and she’s her usual happy little self most of the time.

So I’m waiting for it to be obvious. Except she’s throwing up every night, she’s in the hospital all the time, she’s got a god damn Hickman line in her chest covered in a dressing that she picks at all the bloody time. How much more obvious does it need to be for me to sink it.

I’m waiting for things to settle down, to get into a routine. Partly because I need routine, we all do, it settles me to know what I’m doing. I don’t deal with change well, never have. Without it, without a plan, I drift. Nothing gets done, I skip stuff. Plus it leaves me in limbo on when and how I got back to work. I can work from home in theory but I find it really hard, much for the reasons above. I drift.

I wonder if there is some sort of denial. I’m not obviously struggling either. I’m not curled up in a ball crying but then I can’t. I have things to do, kids to sort out, a shop to run. But even if I didn’t I don’t think I would be. I know when I’m in a curling up into a ball mode. I don’t seem…devastated if that’s how I’m supposed to feel. I’m not sure if there is a certain way I’m supposed to feel.

But there I’m exhausted. My diabetes is somewhat out of control due to a crappy diet and comfort eating. I don’t sleep when my wife and baby are away. I don’t sleep if I am in the hospital with her. I can’t always get my head straight, I’ve missed meds and I’m still catching up on lost serotonin and hormones, I’m run down and have the kids snotty nose and sore throat and my anxiety is…constant.

Constant low-level anxiety is something I’m used to. it’s like trying to balance on a line, a kerb, a wall, and wobbling the entire way. I am good at pushing through it but I can only push so far. Voicing some of my fears to my colleagues yesterday helped when I popped in to see them and hand in my sick note.

Another change.

I do realise that I’m scared.

On Saturday I had a nightmare, a few odd bits and bobs but the main part I remember was that Beany had a scan. And it wasn’t good news; that despite her bouncy mood and happy demeanour, the cancer had grown. She was getting worse.

It didn’t help that when I got home that evening, a letter for her MRI was waiting for me.

I guess, if anything, I am waiting for her to get worse.

Hopefully, that won’t be the case.