36. Doubts

When I started this blog, I promised myself I would be honest with myself. Anything I wanted to spare people would be left unsaid or vented and kept private. I also wanted to avoid talking myself into depression or self-pity, moaning on and on about how awful everything is.

I’ve not struggled with the honesty. I have struggled with the moaning and have to keep reminding myself that I’m one of the lucky ones. I heard myself saying it to Anne today and feeling surprised that not only could I say it, I also believe it.

It doesn’t stop me from feeling shit though and this has been a tough few days. They’ve gone against my expectations. The early emergence from the chemo-trough led me to expect that, by week 3 in the cycle, I’d be ok, if not fine. It hasn’t worked out like that. Some symptoms (taste, salivating, sore tongue/mouth) have actually got worse and fatigue doesn’t quite cover the utter exhaustion the simplest activity like getting dressed or walking upstairs brings on. I feel a little embarrassed, as though I ought to be able to do better than this - not a constructive attitude right now.

And there’s another effing cancer advert on. What is it with tv and cancer??

So I find myself in a psychological low spot and it’s hard to remain positive from down here. Tomorrow is round 3 of three. I’m not scared or anxious about it - I actually wonder if the steroids will give me a bit of respite. I just have no idea what to expect. Round 2 has shown that, in my case at least, it doesn’t necessarily get easier. There’s a kind of superficial numbness in so many areas of my body that I find quite scary, especially when it affects anything in my mouth. Am I condemned to another three weeks of this? I know three weeks isn’t long in the grand scheme of things but it’s hard work when it exacerbates the underlying anxiety that never leaves me. Then of course, there’s no guarantee it will suddenly disappear once I’ve stopped the Epirubicin and Cyclophosphamide. Maybe I’ll be one of the unlucky ones who continue with their side effects for months, even years.

Then I move onto weekly Paclitaxel treatment, briefer and with fewer side effects. BUT - and this is where I broke my self-imposed rule of remaining in ignorance - I’ve read about some pretty awful experiences of this in the breast cancer care forum. I should have kept away, kept to my decision not to delve into any of this in detail. I know that the people most likely to post are those who are scared, worried or pissed off. I wasn’t too appreciative of the person who responded to my query about loss of taste with a statement about how few side effects she’d had and she hadn’t experienced this. I still don’t know what her intention was. It certainly didn’t help. However, maybe there should be more posts from people who have had ‘positive’ experiences?

So the next three weeks remain as uncertain and unpredictable as the first three weeks were. Maybe there will be good (ok) days as well as bad (beyond awful) days; maybe they’ll follow a pattern; maybe they’ll be random like this month. I made two arrangements for Wednesday, based on my experience so far of the steroid boost. Right now, I’m wondering if I made a mistake.

I definitely prefer the Land of Denial approach but I’m finding it harder to get there, let alone stay there. Someone please wind me up! I’m sure psychological exhaustion is making the fatigue worse.