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 GaryG298207 and a very warm welcome to the Macmillan Community but sorry to hear about your diagnosis.
Navigating a cancer journey can be such a stressful and challenging time but getting support from people who have walked or are walking the ‘exact same' journey can help a lot. (I have a completely different cancer).
The Community is actually divided into dedicated Support Groups (Discussion Rooms) so can I recommend that you look to join and put up your own post in our dedicated……..
…….. support group. This group is a safe place to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.
To connect in with the group please click on the link above……. then once the group page opens you will see a [Black - Click to Join - Banner] at the bottom of the page, click in this box and this will then confirm that you have joined the group.
You can then introduce yourself to the group by putting up your very own post by clicking [+ Create new post] or [+] in the top right of the group page.
You can copy and paste the text from this post into your new post.
The Macmillan Support Line is open between 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00…… this service provides cancer information, practical information, emotional support, benefits/financial/work guidance or just a listening ear.
Talking to people ‘face to face’ can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing.
Do get back to me if you need further help navigating the community.
