Hi all
It's been a while since I was on here, apologies and I am so so sad to see all the new diagnosises. My mum has GBM, its a year since diagnosis and 6 weeks radiotherapy with chemo didnt help. She is on alternative chemo tablets on a reduced dose but they leave mum so tired. 3 Cycles done.
We flew away in December and had a brilliant family making trip I will cherish. Since that time speech is basically gone and memory :(. Mum is barely mobile and she knows us/isnt in pain.
We are now reaching a point where I think, is it fair to give a 4th cycle (at 60% dose as she is weak now)? Or do we now pause and enter a palliative care? When is the right time?
My dad is primary carer and he is everything he needs to be at the moment, I am so so proud of him but he is tired and won't engage with any talk of letting go.
What to do? When do we let go?
Thoughts and warm wishes to all struggling with this awful disease.
Hi DD2025
lovely to hear from you again. Sorry to hear the path is taking a downward turn. Delighted to hear you had a special family holiday. Memories are priceless.
There are no hard and fast rules to the treatment dilemma you are facing with your mum. Everyone's situation is unique and it comes down to what's right for your mum and not what's right for everyone else around her. Speak to the medical team, talk to your dad and your mum and as a family you will reach the decision that is best for your mum. In our case, G values quality of life over quantity and he had declined all further treatment offers after the 6 weeks of oral chemo/radiotherapy. Towards the end of his journey I faced a similar dilemma though to you based around steroids not chemo. The steroids had been keeping him going but we reached a point where they were doing very little but also knew that to stop them could trigger a rapid downward spiral. G wasn't enjoying much of a quality of life by that point so we stopped the pills. It was a tough decision to make emotionally but in my heart, I know it was the right one.
Sending you love and light and strength and hugs
Wee Me xx
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