Around 18 months ago I was referred to ENT by my GP because I’d been having headaches daily for around 9 years or so. My GP suspected chronic sinusitis so referred me to ENT, however the ENT consultant assessed me and determined that there were no concerns with my sinuses and that he felt he should refer me to have an MRI of my brain “just in case”.
I had an MRI, then was called in 2 days later for an MRI with contrast, and then called in another 2 days later to be told that I have a low grade glioma.
The tumour is in my right frontal lobe.
I have been referred to my local specialist hospital and am under the care of the Neuro-oncology team, however am awaiting a perfusion MRI, a Neuro Psychology appointment for a higher level cognitive assessment, and then a face to face appointment with the Neuro-oncology team to discuss my results and treatment options.
I’ve been dealing with it fine (with a lot of dark humour!) but today I’ve had a massive wobble and am just so upset that this is happening to me.
I don’t know what to expect, I don’t know who to talk to (professionally), I don’t know if I should be going to work (I had a huge breakdown today), and I’m just so annoyed at the world that this is happening. Please can anyone give any insight about their journey and treatments moving forward?
Thank you x
Written by
DogLover0
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What can I say? I have a higher grade glioma (grade 3). Like yourself it was diagnosed after only 12 months of debilitating headaches. It was initially thought to be a Glioblastoma grade 4 but after nearly 10 years I had a relapse and they put me under the knife for a second time, this time downgrading it to an Oliogodendroglioma grade 3.
All I can say is like you, I wasn’t looking for a brain tumour diagnosis, just wanted to know what my headaches were.
And, like yourself, I never looked into it thinking that it was a brain tumour, just wanted to know why I had such debilitating headaches.
I know it sounds a little weak, but you’ve got to get yourself out of this depressing rut and start living again.
Thank you for reaching out to the group, I am very sorry to hear about your diagnosis. It sounds like you have had a really difficult time over the last few years to get to this stage. Please know that we are here to support you - it is completely natural to have a wobble and feel upset when you receive news like this, so please be kind to yourself.
We offer a wide range of services for anyone whose life has been affected by a brain tumour, including free counselling, online support groups, money and benefits advice and a lot of information resources on our website: thebraintumourcharity.org/l...
Please do not hesitate to get in contact with us anytime you have any questions or just want someone to talk to. You can email us support@thebraintumourcharity.org or call our Support and Information line on 0808 800 0004 (Mon-Fri, 9am-5pm). Warm wishes, The Brain Tumour Charity Support Team
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