I was admitted for an emergency removal of a Meningioma tumour from my brain lining in April 2025, which was successful. Unfortunately, when checked, the tumour turned out to be cancerous, graded at number 3 and so I was admitted for a 6 week (5 days per week) treatment of brain radiotherapy during the Summer and am now awaiting an MRI to take place on November 24th.
I am currently suffering from a number of side effects from ths treatment; notably 'Somnolence Syndrome' which is giving me SEVERE fatique requiring 15/16 hours sleep per day. It has also given me a poor appetite, resulting in some weight loss, which I am using dietary supplements for. During surgery I now have had to have a 'bone flap' inserted into my head and screwed to my skull to cover the hole that was made for the tumour to be removed and all the hair that I lost over the treatment area has yet to start to grow back. I have been suffering deafness in my left ear and a swelling in my left eye, as the tumour was located on the left side of the brain.
According to NHS statistics, only 50% of those taking this treatment manage to survive for up to an additional 5 years, with 25% making it to up to 10 years. I am 67, so maybe not much to look forward to, but I was just wondering if anyone on here has suffered this type of experience and what advice you might have for dealing with it all?
Regards...Gary
HI Gary
a warm welcome to the online community. So sorry to hear about all that you've been going through.
My own experience lies in supporting my late husband through the three years of his stage 4 Glioblastoma journey so an entirely different scenario.
This is a safe and supportive space so please reach out here anytime. I'm sure some of the other members of the group with relevant experience will reply soon There's always someone about to listen who gets it, someone to hold your hand and to offer a virtual hug when its needed. You're not alone. We've got you.
It’s always good to talk so please remember that you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.
For now though I'm sending you a huge virtual hug and lots of strength.
love n hugs
Wee Me xxx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
