Things I know…

I have a meeting with my new neurologist on Tuesday at the National Hospital for Neurology and Neurosurgery in London, so I’ve been trying to sift through the things I know and things I’d like to know about my condition.

These are the things I know:

I have a brain lesion on the left hand side, deep into the brain, that is strongly suspected to be a low-grade glioma – a type of brain tumour.

The glioma has blood vessels running through it, and also is quite diffuse – so runs into parts of the brain, rather than being a distinct ball.

This means it is non-operable. Surgeons need to take 95% out to make a difference to my life expectancy, and its position, diffuseness (a word?), and the blood vessels mean nothing like that amount can be ‘de-bulked’.

It is suspected to be dormant, or at least slow growing and non-malignant, just now. This will be confirmed (or contradicted) at the end of July when radiologists do another MRI scan and then the doctors measure any growth between that one and my last scan.

The tumour is causing me to have partial epileptic seizures, which currently are only happening when I’m working hard on the bike.

If it is a low grade glioma, it cannot be cured. They can be surgically removed (though mine can’t), they can be blasted with radiotherapy and chemotherapy (mine might be able to be), but they always regrow, and they always turn malignant sooner or later.

These are the things I still don’t know, that I’d like to:

How do my anti-seizure drugs working, and why if I’m taking them am I continuing to have seizures? If I up the dose, will the side effects get worse?

Why is physical exertion bringing on the seizures? What’s actually causing them, and is there anything we can do to allow me to work on the bike and not have seizures?

What – honestly – is the prognosis for someone with my type of tumour?

I’ve had varying offers, and read yet more. From 5 years to 10 years (from diagnosis to death). But does that include treatment time, or is that if left untreated? Does that include those who can have surgery, or all of us?

One surgeon has estimated mine has been around for a year already – does that mean I’m starting a year down, or is that accounted for in the statistics? (It’s all a little bit like the Tour de France General Classification competition, isn’t it?)

(I of course know the answer: every case is different, statistics for life expectancy are retrospective, not predictive, but hey – we do love a statistic, don’t we?)

When it does turn malignant, what happens next? What are the life expectancy stats for that? (I’ve heard a year at most). What will my decline actually look like, and to what timescale?

What risks and benefits of radiotherapy and chemotherapy are there likely to be in my case? If either will just make the remaining part of my life miserable, are they worth it all all even if they extend it a little?

Exactly how cool, yet weird, is it going to be to be awake when you drill a hole in my skull and poke around in there to take a biopsy of the tumour?

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