Hi
my mum was diagnosed with left Parietal lobe glioblastoma 3 years ago. She had an operation , radio therapy and 4 rounds of chemo (she couldn’t do the 6 as it was too much). They gave my mum 12 to 18months . My mum has exceeded all expectations and she has just passed the 3 year mark.
However, my mum has just had her 3 monthly (ended up being 4 months as she wasn’t very well at the time) MRI and her scans has shown she now has 2 more glioblastoma tumours growing on the right side . The tumours were not on the 3 monthly scan before that . There is nothing that can be done now and they have given an estimate of 3 months left for her to live.
She has carers 4 times a day, she can walk with a frame from a bed to a chair (it’s next to each other ) but that’s it . Her short term memory is awful and she forgets words a lot . I have also noticed that she can say things that can be quite horrible , which I know is not her fault and it’s to do with the tumours. I struggle to deal with that side of things
I know everyone is different, but I just wanted to ask is 3 months realistic and and how quick can it happen
Thank you
HI Moohorn
so sorry to hear that your mum has had a recurrence of her glioblastoma. Sadly with these tumours they do seem to eventually put in a re-appearance in my experience.
I supported my late husband through the three years of his GBM journey. He showed signs of recurrence in Oct 2022 and a repeat MRI six weeks later confirmed it. At that time he was offered further chemo but declined it. Towards the end of Jan 2023 he had a further MRI. When we spoke to the oncologist on 27 Feb 2023 he said there was nothing more they could do and handed us off to the local palliative care team saying he thought G had at best a few weeks. In the end G got another 8 months to the day.
The timelines that doctors give are best guesstimates based on published averages. No one is average. Everyone is unique and this journey will last as long as it is supposed to last.
Again as for how quickly the end can come, there's no standard answer. In our case G developed a DVT on top of everything else in late August 2023. We were warned if that blew then that would be it. On 21 October 2023 he had a really good day. He was still physically fit (G was 54 and a marathon runner) so he had spent 3 hrs cycling in the garage on his static bike, been out for the afternoon with a friend, was the first finished his dinner at night ( we didn't know it then but that was our last family dinner) then went to watch TV for a bit before bed. Cognitively he was not good, his speech was very poor and his walking was more of a shuffle by that stage. When I went to bed he was already asleep. Around 6am I wakened with him sounding as if he was going to be sick, which he was. Something had happened overnight - stroke, seizure, DVT had blown at some point - and he was no longer able to speak and struggled to stand. He deteriorated during the day but the community nurses arranged for carers to come in and help out until he could be admitted to the local hospice the following day. He went into the hospice on the Monday afternoon and passed away peacefully on the Friday afternoon.
Is your mum on Dexamethasone, the steroid? G was prescribed that in varying doses in the final few months of his journey and it made him very nasty. It's hard to hear them say vile things but do try to remember its the tumour talking not them. If the "real" G could have seen and heard himself towards the end he would have been horrified. By the end it felt like living with a very broken stranger.
I've tried to be open and honest about our experience. if it has upset you, I'll apologise now as that was not my intention.
This is a safe and supportive space so please reach out here anytime. 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 xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
