Recently, there has been a deluge of messages* from people, requesting updates to this blog (*OK, about half a dozen people emailed to see if I was dead yet). No I’m not dead yet. So here’s the plan – I’ll issue a rash of short updates and then forget to do any more for another year, yeah?
So. Last we heard, I’d just finished chemo. A mere 18 months ago. *sheepish face* The first order of business once treatment was over was to see if any of that shenanigans had actually been worthwhile, so back in to the MRI tube I went. Shortly afterwards I had an appointment with Paula to see what was what.
Luckily, Paula was pleased. The tumour had not grown during treatment (I should bloody well think not!) and in fact the area looked a little better on the MRI because swelling and irritation caused by the biopsy and radiotherapy had had time to go down. I told Paula I had lots of questions. “Ah, good woman” she replied wearily, so I made them quick. As far as I can remember, they were probably of the what happens next variety. The answer boils to down to watch and wait. This is the usual course of action for low grade brain tumours like mine. If deemed necessary and possible, the tumour is whipped out, then/or patients have regular MRI’s and if anything starts to change different treatment options will be considered. You only go through the radio and chemo shenanigans for a low grade tumour if, like mine, it’s in a sod of a place and acting all symptomatic.
So, you start off with quarterly MRI’s, and if you have a few good ones, you drop to every 4 months, then every 6 and so one until ideally, you’re down to an annual (or maybe every 2 years?) call back. So that’s it. Bang bang bang bang, treat you in the head and then stop until you need it again, which will be determined by scan or by keeling over.
There was just one more thing. In a manner similar to telling me a shoelace was undone, Paula said “oh, you know about the meningioma of course?” I most certainly did not bloody well know about the meningioma.
A meningioma is a benign thickening of part of the meninges, the membrane around the brain and spinal cord. Although not a true brain tumour, they can cause problems if they grow big enough to start squashing parts of proper brain in to mush. They’re the most common type of brain tumour; indeed most of the brain tumour club gang are meningiomas, but they usually cause no problems at all. There will undoubtedly be people reading this blog who have one and don’t know it, not ever have cause to find out about it.
I ought to have fallen in to that category. My meningioma was only spotted because I was having regular MRIs. In fact, I’m convinced that no one knew it was there until the post treatment review, which must be done by extra eagle-eyed radiographers comparing the before and after photos. If you travel directly back from the bridge of my nose, you’ll find my meningioma (but please don’t), whereas my oligodendroglioma is at the top of my head. When I started having seizures, a cause was sought and a cause was found. Cease seeking. Heuristics will get you every time.
Whilst Paula was spectacularly unconcerned by my ‘tiny’ meningioma (she’ll be more used to ones the size of actual grapefruits rather than grapefruit pips like mine), I was spectacularly bothered because not only had the number of brain tumours I had increased by 100% since I walked in the room, this tenacious little bugger had actually GROWN over the course of treatment. Plus, as Paula noted, with my knack for unfortunate siting, the tumour is very close to my optic nerves and if it continues to grow will require a “wee bit of radio-surgery” to prevent me losing my sight.
It really felt, despite the absolute medical non-event that this meningioma is, like a kick in the pants. I know it’s an over reaction, but it was so deflating to think that after a year of treatment, I was now doubly tumourous, and raise the average number of brain tumours per person to one whenever I’m alone with someone. Even now, I worry more about the meningioma than the oligodendroglioma, despite that being completely arse about face from a risk perspective. Although please don’t fret. I barely give either of them a thought nowadays, it just bothered me a lot at the time.
As Oscar Wilde probably wouldn’t have said; to have one brain tumour may be regarded as misfortune. To have two looks like greed.