Amy's Brain

The egg in my head

Brain Update 3a – Eggy Head


Very quick update. I’d like to write more but haven’t found the time and I know lots of caring, lovely people are patiently waiting/worrying and keen to know how it went this week.
I didn’t get an appointment at Stoke this week but did go to the Walton Centre in Liverpool. I much preferred it there and will go there for my treatment. It was more welcoming and better organised than Stoke. I met with a very senior neurosurgeon there so feeling like I’m in the right place with a good surgeon. I’ve a detailed scan a week Monday, surgery likely to be a week or two after that.
From the consultation:
– It’s still most probably grade 2 glioma. Astrocytoma or oligodendroglioma (try saying that with a marshmallow in your mouth!). Very small chance it could be something better and also very small chance it could be something worse.
– Tumour is pressing lots of brain areas, I think I’m lucky to be getting away without much wrong day to day – even the left hemisphere is a bit squished over
– Prognosis not possible until after biopsy (where they take bits of the tumour and look under the microscope plus a bit of genetic testing), I can get life expectancy information if I want it, 1-2 weeks after the surgery
– Mr H very optimistic that he can get well over the target of 85% removal, probably over 95% which improves prognosis
– Awake craniotomy unlikely as probably not necessary, surgeon isn’t worried about bumping into key functional areas
– He has some patients who have survived 20-30 years with grade 2 glioma, so plenty of space for optimism right now
– Minor risk to optic tract as it runs through the tumour it may leave me with reduced visual field (not that bad but may mean I can’t drive)
– Minor risk to left side of face – slightly lop-sided smile not full on droopy drooling
 – Of course some risk of death in surgery (<1%), seems like this would be a freak occurrence some sort of random brain haemorrhage, plus all the normal risks of infection etc.
Thanks so much if you’ve sent me a nice message – I do appreciate them even if I haven’t had time to write back. I’m feeling very loved.
Dee’s out on a park run and normally proof reads my emails as I am not very accurate with spelling, grammar etc. So errors are just me, probably not tumour related 🙂
I’m planning on writing something with a bit more chat and cheer shortly, there’s lots to say. In the meantime here’s something I think is funny
xx

ps can of squirty cream is to make fancy topped coffee, not for the nitrous oxide!

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