Alora Fane

I went to the BRAIN CANCER HOSPITAL today, for the first time since just after radiotherapy. My scan looked fine (that is, there were no shocking changes since the last one), which is a relief. I also found out a bit about why I'm so often fatigued.

I'd been worried about this for a while, wondering whether I'd be told I had FIVE YEARS LEFT TO LIVE!!! or something like that, and how I'd cope if that were the case. I actually asked the doctor how long he'd estimate my lifespan to be considering my condition, and he said he has no idea, there's no way he can know, and to just plan my time assuming I'll live as long as everyone else. If the cancer had flared up again, there'd be more of a concern, but since it hasn't, I can relax a bit for now.

In a weird way, it's somewhat disappointing, since if I were going to die soon, I wouldn't have to worry about earning money or growing old and increasingly lonely... But oh well. It is what it is.

I've been working on something MARDEK-related these past few days, and I wanted to post about that, but fatigue's been getting in the way, as it often has been since the surgery. Cancer, radiotherapy, and surgery can all lead to fatigue anyway, and my lifestyle's not exactly ideal, so it never exactly seemed mysterious that I felt tired so often. Normally it would have improved by this point, though, and it hasn't.

Something the doctor said might shed some light on why that is. He said that since the treatment (surgery + radiotherapy) was around the midbrain area, then perhaps the damage to a region called the ∞ reticular formation ∞ could be to blame.

I've just been reading about this myself - I'm at least somewhat educated in neuroscience and neuroanatomy, after all - and it seems that it's not as complex as just "sleep bit damaged = tired now". The reticular formation - specifically a part of it called the 'ascending reticular activating system' (ARAS) - is related to sleep and waking, but also consciousness; it seems to be the primary part that pulls you into consciousness and eases you out of it. So if it were just damage to that, then it's interesting that I'm not having more issues with my consciousness in general. Or maybe I am, but since it's affecting consciousness, what I fundamentally am, maybe I'm unable to perceive it?

I'll need to look into it further. For now, there are plenty of other factors that are likely also contributing to what seems to be called ∞ excessive daytime sleepiness ∞, though it's worse than it's ever been, so there probably is some neurological issue there. It's likely to be permanent, too, the doctor said... I'll just have to find ways to live around it.

It's so annoying though, and so random. Some days I can wake up early and work all through the day until late without issues, others I can barely do a couple of hours of work before feeling like I've been awake for a week and can't concentrate or do anything, so I end up going to lie in bed, and sometimes falling asleep. There are definitely people who'd look down on me for that - "I work for 12 hours a day, and you're *napping*??" - but it's not as if I want to do that. It's a huge pain, and I wish I just felt more alert and productive.

Anyway, I'll write another post about MARDEK-related stuff soon, likely tomorrow. For now, I'm just glad to have not got terrible news.

EDIT: I was thinking about this last night, lying awake despite trying desperately to stay awake for the hours leading up to that, and it would explain a lot of things if I had damage in this area. Immediately after the surgery, I was completely incapable of sleep for two or three weeks; it seemed as if consciousness just wouldn't turn off, and I remember thinking that that alone - just never getting a chance to not be conscious - felt like a cruel and unusual form of hell. Drugs were probably playing a role there, and it eventually improved so now I can at least fall asleep as normal each night, but it's still not perfect, and maybe it is something I'll just have to find workarounds for.

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