Hi everyone!
My (26) mum got diagnosed with a glioblastoma in autumn 2023. She's since had surgery to debulk the tumour and has been undergoing radio and chemotherapy.
She's doing well but has quite intense changes in her mood - some days happy to be there with me and others can't find any joy or happiness in anything. We also lost her mum (my grandmother) just before Christmas so it has been an especially difficult time. I love my mum wholeheartedly - she is the most caring and loving person i know - but she's not a generally happy person and that can make things extremly difficult at the moment.
My father is doing most of the caring and i take her to the hospital a couple of times a week. He seems to be very unemotional about things and just keeps saying how numb he feels. He is snapping at her a lot which is both understandable as she is being moody and hard work at times, and horrible to see because she is going through so much.
Recently i've been really struggling with just how angry i am about the situation, and how unfair it all feels. We haven't had a prognosis meeting with the doctors since the initial diagnosis and treatment plan, and whilst the doctors keep telling us its going 'well', its hard to know quite what that means. My mum doesn't want to know so I can't ask in any of the meetings we have with them.
My parents are both uninterested in finding support outside of the three of us. My friends and my partner have been lovely but often just don't know what to say or can only really understand the sadness, not the guilt, anger, confusion and sometimes hilarity that comes with this situation. At the moment I am struggling to cope with things - does anyone have suggestions of where they've found support? There seems to be so many options out there of phone lines and centres to go to that I can't work out where to start and whats for family/carers like me rather than for patients themselves.
Thanks all
HI Porgiepie
a warm welcome to the community. So sorry to hear about all that is going on with your mum. Life's cruel.
I supported my husband through his GBM journey so I cam empathise with the challenges you are facing as a family and you personally. (You can read the gist of our story in my profile)
A GBM journey is an emotional rollercoaster for all involved and it can be a gruelling journey. With regards to your mum's moods, these could be related to the impact the tumour has had/is having and if she's on steroids then those definitely impact mood. G was really nasty and grouchy on Dexamethasone and very challenging to live with. A for your dad's moods, I can relate there. It's scary seeing your partner going through this . Everyone involved goes through all the emotions possible at different stages- anger, grief, denial, etc. There really is no right or wrong way for any of you to feel. You will just feel...and its far more healthy to let those emotions show rather than bottling them up.
I wrote a few bogs for this community that might help here. Here's the links
Caring for a partner with a brain tumour – a Community member’s story - Macmillan Online Community
“I’m fine”: how do you really cope as a carer? - Macmillan Online Community
This is a safe and supportive community so please reach out anytime. There's always someone around to listen who gets it, someone to hold your hand and to offer that 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.
With regards to prognosis, I can understand not wanting to know. Sometimes its easier now knowing. Timescales offered by the professionals are best guesstimates based on published averages and no one is average. Everyone is unique and these tumours impact each person in a unique way.
There's some great guidance on how to support someone through this journey on the main website. Here's the link Supporting someone with cancer | Macmillan Cancer Support. There's also another couple of groups on here that you might wish to explore
(+) Cancer carers forum | Macmillan Online Community
(+) Supporting someone with incurable cancer forum | Macmillan Online Community
(+) Family and friends of people with cancer forum | Macmillan Online Community
I'd also suggest talking to your mum's GP or medical team to see if there are any local support groups etc. Our local hospice offer a range of services to support the whole family. If there's a Maggie's Centre local to you they can also offer support to you all.
I hope some of this has been helpful. There's such a lot to take in that the whole journey can feel quite overwhelming at times and that's ok.That's when we're here for you.
For now though I'm sending you a huge virtual hug and lots of positive energy.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Hi PorgiePie,
Welcome to the group and glad you found us. I support my wife who has a glioblastoma and is 18 months since diagnosis though unfortunately starting to decline quite rapidly now. The wonderful Wee Me has covered a lot of info and there's a couple of bits I would add to respond to specific points in your post.
The prognosis question is understandable but my wife never wanted to know this either. Often even if you did ask they can only tell you a rough estimate based on general stats for this cancer. Then when my wife had a scan in late November they told us that since the previous scan in August there was "significant progression" and that we should anticipate a few months. But prior to that she'd had many scans and because there wasn't any real growth they would always say we just have to watch and see.
It's worth speaking to your mum's GP about moods. Only after the last scan result did my wife get really down. The GP prescribed an anti-depressant called sertraline and it really made a difference. The GP would probably also prescribe this for your dad but he strikes me as someone who might reject that idea?
As Wee Me says there's lots of support and info here, there's also online group calls organised by the Brain Tumour Support charity for family of those with a GBM which I've taken part in and can be helpful in hearing others' stories and sharing your own. They also have groups for those suffering from a GBM themselves if your mum would want to join that.
And as Wee Me says it's OK to be angry. It's a cruel, cruel disease. Just try to find what works for you, be it talking, exercise or just going down the bottom of the garden and having a scream and a cry (I've done this a few times).
Take care and sending a hug,
Chris
