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I still have brain cancer

5 years ago1,665 words

I got a letter today telling me about my next appointment at the brain hospital: the 6th of September.

The discussion on the previous post surprised me. I freely admit my ignorance on such things; I studied psychology, but I'm not interested in politics. For example, I found Jordan Peterson interesting in the handful of videos I saw him in because what he talked about was stuff I'd covered in my Psychology course (evolutionary psychology, the Big Five, factors affecting well-being including marriage status, etc), so I was familiar with the research and mentality and it wasn't surprising to me. I was really taken aback by the negative opinions of him, especially considering the real good he's definitely done for a very large number of people. He's saved more lives than any of us ever will. But perhaps he's done more harm too? I really don't know enough to say.

I never wanted to argue with anyone about anything, but it ended up feeling like that, so I'm not exactly eager to continue with that. I did do some further reading to understand a little bit more what I was clearly ignorant about, though, from many different perspectives, and in doing so, I came across ∞ an article about Jordan Peterson ∞ that included this sentence, which I found really revealing:



I think that first bolded bit goes a long way to explaining the reaction some of what I've been trying to say has got. If you aren't against them, then you're assumed to be with them. Something like that. An absence of condemnation equals support. Anything greater than -1 is 1; a simple dichotomy, black and white. It's not that simple, of course, but I get the impression that might be what's going on. Maybe. I don't know.

The second bolded bit speaks volumes too, but I don't want to get into that here.

I'm not all that interested in pushing some particular political system though; I'm more curious about the fact that people believe different things and see the world in such varied ways, and why. I'm a psychologist, not a politician. I want to make games that explore different perspectives, not to convert anyone to my 'side', whatever that would even be. If I were to encapsulate my 'political' perspective of the world, it would be something like: I would like to see a reduction of harm, and I don't like condemnation, oppression, or suppression. I wish people would really listen to and understand one another, because I would like to be listened to and understood myself.



It's difficult to really care about any of that too much though. I got a letter today about my next appointment at the brain hospital, for my first proper MRI scan since the surgery last October. I had some scans around December/January for the radiotherapy - I suppose every radiotherapy session technically involved a sort-of scan - but that's when I was so freshly operated on that my brain hadn't even settled. I couldn't even sleep lying down, back then. Now, I seem mostly 'fine' except for the constant fatigue, which could easily be the result of depression instead. Mostly I'd been trying to put it out of my mind, avoiding it like I avoid so much else.

The tumour is still there, though, or at least a sizeable chunk of it is. I can't remember how much had been removed, maybe it was like three quarters or two thirds. Something like that. Most, but not all. When I saw it on the scans for radiotherapy though, it didn't look massively different to how it did before the surgery. It's not like I've been 'cured'.

The thought of what my prognosis might be has been lurking in the back of my mind for years now, but this letter has caused it to resurface again. The kind of tumour that I have (papillary tumour of the pineal region; PTPR) is so rare that when I was talking with the neurosurgeon after my initial diagnosis, and I asked about the prognosis, he shrugged. It was only described in 2003 and 'made official' in 2007, so there aren't enough long-term case studies - or even short-term ones - to know what'll happen. Plus technology and techniques are always improving.

So I wondered whether anything had changed since I did my research when it was first diagnosed, and again around the time of the surgery.

It's unclear what might happen. ∞ This thing ∞ says PTPRs:



Those statistics seem to be taken from ∞ this ∞, from 2006.

∞ Here's a review from 2019 ∞, which says:



The paper was about the factors associated with survival rather than a prediction or report of the actual survival duration. It seems that "gross total resection" - the complete removal of the tumour - is the biggest factor in preventing recurrence. Otherwise it's more likely than not. Mine wasn't completely removed, as I've said, but nor was it a humongous tumour, compared to some.

Here's ∞ another study published since my diagnosis ∞:



(I misread the last bit at first as meaning some treatment course was 'well-established', but what it means is that an aggressive course that attacks functional tissue and spreads to the meninges is a distinct possibility.)

The numbers are all over the place, and the samples too small to really know. All kinds of factors certainly affect outcomes, like with everything.


But if you had something like this and there was 'only' a 28% of it all coming back, or a 27% chance of you just dying outright, how would you feel about that?


I'm not sure how I feel about it, considering how depressed I've been recently anyway, and how aimless. I don't know what's going on with the Sindrel Song thing or whether I'll earn any money from that, and I've been trying to brainstorm a lot of new ideas, but that takes time. Stuff like the previous post makes me aware of how ignorant I am about the world, the feeling of everyone agreeing with one another in disagreeing with me is really uncomfortable, and I have no social network to provide support for contrast. I spend every day by myself. It'd be different if I had a lot going on, a lot to lose, but... I don't know, I feel like I've been in some kind of epilogue for a while now.

So I've no idea what'll come of this. Maybe I'll be one of the lucky ones and it won't bother me again. Maybe I'll show up at the hospital and be told it looks the same as - or better than - last time, and to come back again in six more months. I hope so.

Also, I was really hoping to have Sindrel Song released by the next time I saw the cancer doctor, just because he seemed to respect me for my neuroscience knowledge when we first met (he described me as 'interesting' in one of the formal letters about my progress they have to send out, and went out of his way to check out - in his free time - and remember some anatomical detail we were talking about after one session so he could report to me about it in the next), but that respect seemed to wane when he asked 'what I did' - that is, my job - and I essentially had to say I was 'unemployed'. I hate the sound of that. The fact of that? Especially saying that to cancer doctors and brain surgeons, who've really made something of their lives. So if I can say "I made a whole game all by myself while going through the treatment process and made money from it and everything!", that just seems like a better story all round. Having it done before I see him again has been a strong desire I've had.

Anyway, I don't know. We'll see what happens, I suppose...