Week 3. The break.

Oh, and I needed it.

Last weekend was the Bad Weekend. Fatigue. I can’t desribe chemo fatigue. Fatigue to the point where having to make any kind of choice is overwhelming. I mean, any choice. Do you want pasta or potatoes? Do you want tea or coffee? Fatigue that reduces you to tears when the kettle is switched off at the wall and you didn’t notice. Fatigue that makes your children sit you down in front of a Studio Ghibli film because that’s the most comforting thing they know. Fatigue that feels like you’re trapped underwater, in the dark, only vague sounds and lights filtering through. Fatigue that challenges your sense of self.

That lasted Saturday through to Monday. Monday, my week’s break started, and I’ve been feeling steadily more myself. Yesterday, I felt pretty normal until about 6pm and then it was like somebody switched off the power supply – but even though I was tired, I wasn’t overwhelmed.

This is pretty good, then. My sense of taste has remained relatively intact. I’ve had some mild, easily controlled nausea, and a bit of squittiness – which I’ve jumped on (maybe over-enthusiasitically) so that it hasn’t gone on to be a proper problem. I’ve been sick once (twisty car journey, anxiety, hot day, steroids…). If it carries on like this, it’s manageable. I’ve kept a diary of symptoms and the medication I’ve used to manage them, and it’s not bad at all.

The worst thing is the fatigue, and the breathing. The breathing isn’t any better. I try not to cough, because it doesn’t improve things, and I suspect it might make things worse, but sometimes I can’t help it. I struggle to hold a conversation. Talking is the big thing that makes it worse – I think it’s about taking a deep breath and exhaling. I just looked it up: Tidal breathing is a cycle of roughly 40% inhalation and 60% exhalation, and the exhalation is passive, meaning no muscles are activated to do it. However, when breathing for speech, the cycle is roughly 10% inhalation and 90% exhalation!

My mum is still in her rehab unit (physical rehab – I’m kind of aware that saying she’s in a rehab unit makes her sound like Amy Winehouse, and she’s really not) – and is 5 hours’ drive away. It’s very hard to have a phone conversation with her because my breathing just goes and I end up barking down the phone. She’s terrible on the phone anyway, but I feel really cut off from her, and I feel bad about that. My parents’ don’t seem to be able to grasp the fact that talking is really hard. I was offered a guest slot at a poetry event next Wednesday, and I’ve had to turn it down. I’ve dropped out of my Italian lessons. My husband has taken the car in for a service today and luckily my daughter is at home and has gone to pick him up (we’re very rurual, the garage is 20 minute’s drive away, THERE IS NO PUBLIC TRANSPORT HERE), because I am not allowed to drive. It’s crazy, but I feel like these things chip away at my identity. We are what we do, aren’t we? What will be left?

And it’s raining. We needed the rain, and, frankly, the cool is welcome. I love the heat, but with chemo, it was a bad combination. The world is greening up again.