Hi all. Completely new here. Just posting to see if anyone else is in the same position.
Last Friday my 79 year old mum was taken into hospital. After being completely fine, she started repeating herself, grabbing for things that weren't there, and not being able to get herself dressed, remember where the toilet was etc. This all happened within 5 days. The GP originally prescribed 3 days antibiotics as they thought it was a UTI. But on day 2 when she had not got better, but got worse I called 111 and they sent an ambulance.
After blood tests, X-rays and a CT scan they came back saying she has a mass on her brain and she would need an MRI. We waited for 2 days for the scan and on Monday they diagnosed it as Glioblastoma.
Seeing the scan it's pretty big. Pretty much the whole left side of the brain going into the middle.
She was on strong steroids for the first 3 days, in hope of bringing the swelling down but unfortunately they have done nothing, so are now being reduced. They also kept spiking her blood sugars as she's diabetic.
We are finally having a meeting with the doctors today (Friday) about it so will find out more.
Oncology came round yesterday and said it's a stage 3 or 4. They probably won't do surgery, and if they offer any treatment it will be radiotherapy.
My parents live in Berkshire, and I moved to Devon 4 years ago so I've traveled up and have been staying with and supporting my dad.
I have 2 half sisters ( same mum), who dislike each other, so that's proving hard, although they are being civil in front of my parents.
It's heartbreaking when we see her. One hour she's completely normal and we're wondering why she's in there. The next hour she's constantly repeating herself, staring right through you.
The night is the worst. I get messages from her constantly saying help me get me out I just want to come home.
I'm struggling to hold it together, supporting my dad, having sisters that are having little digs at each other, and being away from my husband and 5 year old daughter.
I'm hoping they will say she can come home for a bit, but I worry for my dad. He's 75 and not in great physical health. He struggled trying to get her into the hospital bed with my sister yesterday, and I just worry when he's on his own he won't be able to cope. He's not one for asking for help.
Hopefully the doctors will take the decision out of our hands and decide whether the best place for her will be at home or in a care home.
X
Hi Aries,
Really sorry to hear about your mum. I care for my wife who has a GBM and we're 16 months in (we're down in Devon too). Thankfully she was able to have surgery at Derriford (she was 47 years old at diagnosis) and treatment at Exeter so I guess she was "lucky" but we know that it will return sooner or later.
I know what you mean about the scan and how terrifying it is. My wife's was huge and you wondered how she could still be alive with all that in her brain.
I think the meeting you have today will be key. I imagine they'll want to assess whether she's fit enough to take the radiotherapy. I'm sorry to hear the steroids haven't helped, they did wonders for my wife and still do.
There's lots of really useful information on the Macmillan site about different aspects of cancer so if you haven't already have a good browse and come back with any questions. I found it really helpful just reading through the threads in this group to see what others' experiences had been like. Although we are all looking after someone with, or suffer from, a GBM we all end up taking slightly different routes depending on how it progresses and local care provision.
When it comes to the practical and emotional challenges of supporting family and friends you may also benefit from joining our Carers only support group where you will connect with others navigating the same support challenges.
It’s always good to talk so please remember you can 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.
Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing. Or it may be as is the case for me that there are other local charities that can support you.
Hope some of this is useful and please do use this group to ask questions or just vent how you're feeling.
Sending a virtual hug,
Chris
