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Brain's Worse

6 years ago1,182 words

It's been more than a month since I had brain surgery, and I was gradually recovering... but I seem to have taken a turn for the worse in the last week or two or however long it's actually been.

Before I talk about that, I want to say that while I always appreciate comments on this blog, especially supportive ones, I haven't read the ones on the previous post yet. I want and intend to, but at the moment I feel so awful that I haven't yet mustered up the energy to do anything other than pretty much just lie on my bed. Hopefully things will get better though!

Anyway. I've been feeling 'bad' since the surgery, but I started waking up in the middle of the night about a week ago, feeling so completely dizzy that I had to run to the toilet to throw up. That only happened twice in a row, but that's still more times than I'd like. The second time, I felt so disoriented while throwing up that I literally fell to the floor and couldn't get up for a few seconds... After that, I just went to the living room (the bathroom is downstairs and my bedroom is upstairs... annoying) and sat upright because I didn't have the energy to go back upstairs (I'm amazed I got down in the first place).

I felt so bad that it woke up my parents, who - long story short - took me to A&E at a nearby hospital, where I had a bunch of tests run and had a CT scan of my head. The whole ordeal took something like nine hours, most of which was waiting, and I was in my pyjamas the whole time because we went in the middle of the night and I expected to be in and out within an hour (and if not for the waiting, we would have been). Normally I'd have been highly anxious about that, but I didn't even have the energy to be anxious.

I was concerned that maybe I had a recurrence of hydrocephalus, which is essentially increased pressure in the head due to cerebrospinal fluid buildup as a result of the normal channels being blocked. I certainly had some of the symptoms. All my tests turned out clean, though - the neurosurgeon even reviewed my CT scan and said he wasn't concerned - so I don't know what's causing the dizziness and general 'urgh' feeling, which I'm still very much in the middle of.

For the past two days, I slept okay and felt just tired rather than dizzy... but I woke up in the middle of the night again last night feeling extremely dizzy. It seems to be related to how I position myself when I sleep, perhaps. Since the A&E thing, I've been sleeping relatively upright, using pillows to create a sort of sitting position. Last night I was still doing that, but I slept on my side... and it seems that that's what's causing the disorientation, because sitting facing forward or on my back seemed to 'cure' it fairly instantly. I saw a post-surgery CT scan of my brain yesterday, and the brain looked generally sort of... messed up, I suppose. There was space and CSF where there shouldn't have been - at the front, for example - as if the entire brain had been moving or shifted around. While I might not have hydrocephalus, I imagine shifts in my brain from moving my head do shift the pressure in unpleasant ways, and might account for some of these symptoms. It certainly feels a lot worse when I turn my head...

Yesterday, I went to another hospital to talk to a radiotherapy doctor for the radiology I'll be getting to treat the remainder of the tumour. The surgeon got rid of about 75% of it, you see, so there's still 25% left. Radiology (or whatever the correct word is; radiotherapy?) essentially involves shooting at the tumour with several radioactive beams, none of which are individually potent enough to cause real harm, but they converge on a single point to add up their doses and deliver a fatal dose of radiation to the tumour cells. I think I mentioned this in the previous post? Everything's a bit of a blur though so I'm not sure.

I don't know much about radiation treatment. Apparently it can cause hair loss and a red, itchy, sunburn-like effect on the skin where the beams come in and out... but if it can do that to the visible parts, what does it do to the healthy brain tissue? I asked the radiation doctor that, and he said something about how it does damage the brain tissue, but it recovers... though not completely. Something like a 95% recovery of damaged DNA within a day, or something. So is it causing damage to the DNA then, unavoidably? Just the DNA? And the grey matter can recover much better than the key midbrain structures, which can't really recover at all... and which my tumour is right next to.

I was told that there could be some permanent effects of the treatment on my brain. Reduced short-term memory and concentration, that kind of thing. It's worrying. They treat a lot of old people, though - most of the people I saw in the hospital's cancer ward were old, grey, and hobbling - so I wonder whether they say these symptoms are expected for their sake, because they would have had such brain issues anyway... They also seem to be more common in children as well though? I don't know.

The radiotherapy is going to go five days a week for six weeks, and the hospital is an hour drive there and just as long back. The treatment itself is brief - like fifteen minutes, including all the before and after setup - but getting there and back is going to be very irritating. A hurdle I'll think about when I get to it, I suppose.

Anyway, I'm finding it really difficult to write, so I'll stop now... I think I've said the most important things. I've been wanting to work on that game I mentioned, and I've written down a few ideas that have come to me... but as I said, doing anything other than lying on my bed is a huge challenge. I haven't talked to anyone other than my parents and medical staff in a long time. I'm hoping that this is a transient thing, that I'll feel better again soon... but I don't know. I'll be having the radiotherapy within the next couple of weeks, and that'll go for six weeks and usually causes tiredness.

Ugh... I keep thinking "why me?". This brain cancer thing is awful, but it's not even the worst thing. The loneliness is harder to endure, a lot of the time. So many terrible things seem to have happened in this life... But I suppose thinking about it won't do any good.

I'll post this now and then go back to lying on my bed, I think...