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Relief!

8 years ago1,014 words

After weeks of waiting, depressed and hopeless, bracing myself to hear that my brain tumour would mean the end of my life as I know it in some way or another, I've finally found out what's going on with it and... well, it's a relief! It's not great news, as such, but it's better than the worst-case-scenarios I've been envisioning for ages.

I can't remember whether I actually wrote about this here - I've lacked the energy to do much at all lately - but I recently had a consultation about the nature of my tumour where they basically said "we don't know what it is". Biopsy results had come back inconclusive, and they suspected it could be a number of things, a couple of which were either a tumour that had come from or spread to another part of the body. So I had to have full body CT scans and an MRI of my spine to see how riddled with cancer my body was (what a fun day that was).

Today's consultation started with the neurosurgeon telling me that the other scans had come back clean, which was a huge relief. I mean, I knew I still had a brain tumour, but at least I didn't have a bunch of other tumours as well.

Apparently though, the brain tumour that I have - a papillary tumour of the pineal gland, I think? - is extremely rare; only 70 cases of it have been recorded in the world. Aren't I special??

What that means though is that there's no standard process for treating it... and whether it even needs treating at all can't be known for certain.

The scan I had of my head recently and the one from four months ago showed no growth of the tumour at all. If anything, it'd shrunk a bit following surgery (though my ventricles hadn't, surprisingly; they were enlarged as a result of the hydrocephalus, and I thought they'd shrink once that was cured, but apparently they'll stay enlarged forever, it seems).

That's a great sign, and I wonder whether it means I've had the tumour for ages anyway but it's been this size for a long while. When I asked the neurosurgeon whether it might have been like this for years, he literally shrugged since he had no idea!

He wanted to operate on it, to remove it... which is fair enough, since that's his job. His instinct upon seeing a tumour, he said, is to think about how to remove it, so his plans were all based around that.

But he said that since it's in probably the worst place to get to (the pineal gland, in the centre of the brain), getting there to remove it would definitely cause neurological damage... either in the form of vision issues (something about gaze control and being unable to look up), or short term memory failure. Both could be temporary or permanent.

And the recovery period would be about a year.

So I don't want that, of course! My biggest fear was missing my second year of university... and I was preparing for having to miss a week or two somewhere, anticipating a recovery period similar to the one for the other surgery, where I was up and about within a few days. A recovery period that long would mean I wouldn't even be able to squeeze the whole thing into the summer holiday period...

I don't really get how the surgery can be so drastically different, especially since to get a biopsy they had to get at the tumour in the first operation anyway... Meaning they could just use that same path to get to it again, I thought. Apparently not though. Annoying.

But I've decided for now that I'll return to university and just have them monitor it every few months to check if it grows. My hope is that it won't; that it's been there for ages and will remain there in this state for perhaps the rest of my life without issue. Just because it's an odd growth doesn't mean that it will continue to grow, after all. I hope.

I wonder though about the power that belief has over reality. I'm fascinated by the placebo effect, and have been for a while; how the mind has power over matter, how merely believing that you're cured of something can make that belief a reality. The same with the inverse, the nocebo effect, where if you believe strongly enough that you're ill, you become ill, or even die. I read recently that perhaps most ailments are psychosomatic in their origins.

For most of my life, I've worried about having a brain tumour... and when I had the fMRI scan at university, I expected them to find something about my brain that was rare, unusual, worthy of note, to explain why I feel like such an odd alien myself.

As it turns out, I do indeed have a brain tumour, and it's a notably rare one. So both of those beliefs came true.

I wonder then whether it's possible to believe the tumour away. I'm aware that it sounds like magical thinking, but I wonder whether cases of spontaneous remission of other cancers and such are because of the extraordinary strength of belief held by those who have them and want them gone. 'Miracles', in some way that evades current medical understanding (and just because we don't understand it yet doesn't mean we never will).

I don't know. I'd be curious to try meditating on it to see whether the next scan reveals a decrease in tumour size. I mean, why not? It can't do any harm, and it's not like I'm avoiding conventional treatment that I'd be getting otherwise. I wonder though whether I can manage to have absolute conviction that this will work; no background, subconscious doubts. Hmm.

Anyway. Hopefully now that the worst of all this is over for the moment, I can get back to focusing on all the things I've been too depressed to focus on, including updating this blog!