I often post on here every few months when things start feeling heavy and I guess here I am again.
My mum was diagnosed with grade 4 GBM in April 2023 age 55 and was given a prognosis of 2 years. Here we are almost 3 years on - it’s hard to beleive!
There was some growth on her last scan around October time last year, and she was given 2 rounds of chemotherapy in November and December. She was then due for a scan earlier this month but she is so scared now to go to the hospital and therefore cancelled the appointment (it’s been rescheduled to end of Feb but I don’t think she’ll go to that either).
Her mobility has worsened she can just about make it to the toilet, and will still use the stairs at home very slowly and carefully. Her short term memory is affected and she is extremely angry and impatient most of the time. She can no longer use the shower so I have to go and help her wash. She no longer gets dressed and will just lay on the bed or sofa all day.
She is really scared that she is just waiting for something bad to happen or to die, and I feel completely at a loss at what we do next. Will the scan tell us anything we don’t already know? How long does she have until things worsen? I know it’s hard for anyone to answer these questions but it always bring comfort reaching out anyway.
Thanks for taking the time to read. Sending love to you all xx
HI JustLooking
lovely to hear from you but sorry to hear that things are slipping with your mum.
I'm going to be blunt- if your mum is scared why put her through the trauma of going for a scan? In our case with G, his scan in Oct 2022 showed fresh growth. There was a follow up 6 weeks later that confirmed the speed that things were growing at at that point in time. He had a final scan in Feb 2023 that we never saw because the oncologist appointment was a video call. By that point, G couldn't understand what the Dr was telling him. After the call ended I had to explain the news to him three times. He was fixated on having 6 months left to live and I had to say that the oncologist had said he may only have a couple of weeks. It was heart breaking for everyone and in the end didn't change a thing about what was to come. If it's going to stress your mum so much why not speak to the medical team and ask their advice on what to do from here.
After that last oncologist call on 2 Feb 2023 we were handed off to the local palliative care team and to be honest, that was the best thing that could have happened to us as a family. I finally had a local number I could call 24/7 and know that there was someone there to help me if I needed it. We got to know the community nurses and the community hospice team. Initially visits were monthly, then fortnightly then weekly towards the end. By the time G passed away peacefully 8 months later, we were surrounded by people who knew us as a family and that made a huge difference. Hospice and Palliative Care are words that scare people but they really shouldn't. The local hospice team in particular were fantastic and those angels wrapped their arms around us all.
This journey is such a cruel one for all involved and my heart breaks for you. I would encourage you to make decisions that are best for your mum and the family and take it from there. This journey will last as long as its meant to last regardless of what any scan shows.
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
Hope that call goes ok. Will be thinking about you. There's no right or wrong options here- only the ones that your mum can cope with.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
