Hello everyone,
my lovely mum was diagnosed with an inoperable glioblastoma in February after a biopsy. She had been experiencing what we thought were falls as we didn’t see them happening but now think they were seizures for a couple of months before she got her diagnoses. As she was diagnosed that week her speech became slurred and she was muddling up her words and because very immobile and really weak. She is only 60 years old and she underwent a 3 week course of radiotherapy as they didn’t think she was strong enough for anything else. After her treatment finished she had a huge seizure and ended up in hospital for a month. She also had another seizure a few days later. She’s been home now having palliative care for the last 3 months. Since she finished her radiation she’s basically a vegetable. She can’t speak or hardly move. Can’t feed herself etc.
my question is, has anyone found radiation not only didn’t help with symptoms but seemed to permanently make them worse? We are past the point where symptoms are temporarily worse with radiation and then get better.
thank you x
HI Mummamel
a warm welcome to the group. So sorry to hear about all that has been going on with your mum. Life's too cruel.
I supported my late husband through the three years of his GBM journey so I can empathise with what you are going through. Its an emotional rollercoaster ride for all involved. G was 50 when he was diagnosed and had surgery followed by 6 weeks of oral chemo and radiotherapy in combination. Two days before his surgery he had a major seizure so it was always hard to know what caused the most impact - the seizure? the surgery? the treatment? He did improve cognitively about a month or so after the radiotherapy finished but he was never close to being the same person ever again.
Several times as we went through his journey he said he wished he had never had the surgery or the treatment. That was hard to hear.
The tumours can grow so quickly too so in your mum's case it could be a combination of factors that have left things where they are.
We spent 8 months in the palliative care phase. I can honestly say that the palliative care team were the best thing that ever happened to us as a family during G's journey. As soon as they came on board I had a number I could call 24/7 and know that someone would come and help us within an hour. It gave us time to get to know the team and the local community hospice team and that made a huge difference as they also got to know us as a family. It meant when the end came that we were all surrounded by people who had got to know us instead of being with strangers.
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
