Mulitfocal pilocytic astrocytoma. Grade 1, main tumour right next to my brain stem, intruding into the main functions of balance, mobility, memory and optical nerve. Very rarely seen in adults, I’m under the care of a paediatric neuro oncologist. There is no literature about my condition. I recently signed release papers for my case and images to be published in BMJ publications.
Slow growing, I’ve probably had it for years but only noticed symptoms in October 2017. On reflection there were probably other signs I could have spotted.
I went to the GP as part of a new patient screening. I’d started falling over for no reason, forgot words and my short term memory became flaky. I had chronic fatigue and numbness throughout my left cheek and left side of my jaw, subsequently diagnosed as trigeminal neuralgia caused by the tumour. But initially it was thought to be stress and fatigue. We had a new baby, moved house, I was commuting for 20 hours a week, 800 miles, just to get to work every day. I was searching for a new job closer to home. The pain was unusual but could have been caused by something as simple as an unerupted wisdom tooth. It wasn’t until May 2018 when things got serious, by which point I’d moved jobs and had to hope my new employers were very understanding. They were, and have subsequently been commended by Macmillan.
I had numerous consultations and blood tests, a lumbar puncture, a bone marrow sample and many, many MRI and CT scans. Just the one traditional X-Ray though. You can read all about my experiences throughout the blog.
If you’re at all worried, get an appointment with your GP as soon as possible. It’s urgent and you’re not wasting anyone’s time.
I had a brain biopsy in summer 2018, followed by 30 fractions of targeted radiotherapy in autumn 2018. It feels as though I’ve taken a million pills and I’ve been through dexamethasone withdrawal twice and recently went through cocodamol withdrawal after many months of high dose codeine. I survive on two paracetemol a day; one at night to prevent severe headaches and one in the morning to take care of any headache that’s developed overnight. I need to be upright with a mug of coffee in my hand within thirty minutes of waking up to minimise the pain. I don’t sleep very well and suffer fatigue during the day.
The tumour has responded positively to radiotherapy. But:
It won’t disappear.
Its location rules out surgery.
I can’t have any more radiotherapy.
So I live scan to scan wondering if chemotherapy lies in wait for me. My neuro MDT (multidisciplinary team) have elected to leave that decision until late 2020.
Until then at least, or indeed at most*, you’re stuck with me occupying this very small corner of the internet.