Hi there, new to the group.
my mum was diagnosed at the beginning of august 2022 with a GMB, to which she took the surgery, removed 95%, followed by the chemo and radiation for 6 weeks. she did amazing after surgery and was up and about and out of Hosiptal within 3 days. But as time has gone on she has suffered 2 fits which has caused her mobility to be next to none. If she isn’t up and walking in a week they will not be giving her anymore chemo. The tumour has grown another inch since her operation. She is in constant pain and her personality is changing. The tumour is in her front temp lobe so was to be expected with where it is but didn’t think it would happen this quick. Looking for people to talk to that are experiencing similar things.
HI
a warm welcome to the group. So sorry to hear about your mum's diagnosis. I can empathise with what you are going through.
My husband, then 50, was diagnosed GBM4 in Sept 2020. His initial tumour was in Broca's Area of the brain , part of the frontal lobe. He too had surgery followed by the 6 weeks of oral chemo/radiotherapy. Since then he has declined all offers of further treatment.
It's been a longer emotional rollercoaster ride. I would suggest speaking to your mum's medical team or CNS about the personality changes and the pain management. I'm no expert but it may be a medication review is needed and that could help with your mum's mobility too. My husband suffered a seizure two days before his surgery and has had a fair few, albeit mainly minor ones, since but he takes Keppra twice a day to keep those at bay. We did need to get his dose reviewed about 6 months ago as the small seizures were increasing and it has settled things on the whole. They re-introduced a low dose of steroids about 4 months ago and that has greatly improved his mobility (it was failing at that point) and improved his speech/communication ability. Little changes can make big differences so its worth asking the question and also voicing your concerns.
This is a safe and supportive space so please reach out here anytime. I've personally drawn a lot of comfort and support from this community. There's always someone around 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.
You might also want to explore Glioblastoma multiforme brain tumour forum - Macmillan Online Community.
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.
I hope this has helped a little.
Please make sure you are looking after your wee self here too. This is a gruelling rollercoaster ride and taking time for yourself isn't selfish, its essential to help you cope and keep your wee batteries charged. I'm not too proud to admit after over two and half years of this journey I am exhausted mentally, physically and emotionally
For now though I'm sending you a huge virtual hug and lots of positive energy. Stay strong. You're coping so much better here than you give yourself credit for. (You'll just need to trust me on that).
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
