My husband is now 2yrs7 months post op- he had debulk) rasio/TMZ up to 3 months ago.His first symptoms about 4wks before his original diagnosis was memory issues, then doing things out of the ordinary, finally word finding issues and a change of gait, these original symptoms come on in a space of a few weeks.
Since Xmas and during his memory has got rapidly worse he would forget conversation only a few minutes before, he also forgot all his passwords and became locked out of his laptop and email.He has made me coffee one after another because he forgot he made it ,we can go round in circles because he keeps forgetting what his said.
He has his routine MRI in about 10 days but I'm starting to think that the tumor has returned now that he has been taken off his chemo.
Hi Slh
lovely to hear from you. Sorry to hear you're noticing some changes with your husband.
A GBM journey as you well know is an emotional rollercoaster ride so it is all too easy to assume that any changes mean the worst news is about to follow it.
Do you have the consultant appointment date yet to review the MRI results? If so regardless of what that MRI shows I'd encourage you to tell them about the changes you are noticing.
The symptoms you describe are ones I saw with G more or less from the start due to the location of his original tumour and the after effects of a seizure he had a couple of days before his surgery. He would also use the wrong word or a made up word for things. For long enough pyjamas were referred to as "zapnanas" around here.
If chemo has been stopped fairly recently it could be the pressure in the brain that's causing some issues but I'm no doctor. I can only comment based on info I was given when I supported G. In our case, the re-introduction of steroids helped to improve things for a while so it may be that a medication tweak is needed.
Not sure if this has helped or not. If you are really concerned and the scan follow up appointment isn't anytime soon then I'd encourage you to give his medical team a call. If nothing else it will help to put your mind at rest.
Sending you a huge virtual hug and lots of strength.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
HI Slh
thanks for the update. Hopefully once the Dex kicks in you'll see some improvement.
The constant loop sounds oh so familiar. G's short term memory was awful right from the start and non-existent after a few months. It's so hard to stay calm and repeat yourself over and over and not scream "because I said so!" The hardest for me was the day he asked me what my name was. That tore me apart. We'd been together since I was 18- some 35 years at that point.
Stay strong. Stay positive. Hope the MRI and follow up goes smoothly. Keep me posted.
Sending love and light and hugs
Wee Me xxx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
hope the appointment went smoothly...well as smoothly as these appointments can go.
sending love and light and hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Thank you,his scan shared a recurrence in another area of the brain and is inoperable.He's oncology team will advise about further treatments next week.
Not unexpected 
Hi Slh
sorry to hear that but as you say its not unexpected. One step at a time.
The last scans we saw of G's brain showed multiple new tumours in Nov 2022. Having developed a dark sense of humour, on the screen they looked like wee white planets around his original tumour site and we joked that he was growing his own solar system in there. We never saw his final scan from Feb 2023 but the oncologist said that they had all joined up. That kind of news is hard to hear but it's not necessarily saying that the end is nigh. G lived for a further 8 months after that.
In Nov 2022 they did offer G more chemo. We asked in his situation what were the benefits of going through that and how much time would it buy for him. In his case the odds weren't great and he declined the treatment choosing quality over quantity.
Everyone's situation is unique but perhaps have all your questions ready for the follow up appointment to help you both make the right decision for yourselves for the right reasons.
Sending you a huge virtual hug and lots of strength
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
