Hi, I've just joined the group - not entirely sure why or what I'm expecting to get out of it. I think at this point I just need to write down what's going on. My dad was diagnosed with a GBM4 in 2018. He was a fit and healthy 56 year old. I was with him on the night he collapsed and had a huge seizure, we all thought he had died. Since that night I've never been the same.
Over the last three years I've watched my dad become a shell of what he used to be. Physically, personality, just everything. I'm at the point of emotional exhaustion and have been signed off work. I know we're on borrowed time so I want to spend as much time with him as possible but that means dealing with mood swings, constant reassurance, repetitive questioning etc. My mum isn't coping well with any of it and that isn't helping the situation. In a time where you'd expect to rely on your parents for support, I almost feel like I'm the parent trying to get them both through each day and hype them up when needed or be there to diffuse sitations.
I'm just fed up, fed up with trying to act like everything's fine when it's not. I can't think about the future too much as I know things are only going to get way worse. How are you meant to miraculously turn your mental health around?
I wouldn't wish this shitty disease on anyone and I can't imagine how my dad is feeling day in, day out knowing that his future has been ripped out from under him, through absolutely no fault of his own.
Hi E1234C
A warm welcome and I'm sending you a huge virtual hug. I hear you. I get it.
My husband (now 52) was diagnosed GBM4 in early Sept 2020. We too are on borrowed time although it feels like "no man's land/limbo" and getting through the day is getting mentally tougher for my and my two kids (21 and 24). My husband doesn't see that or understand that. Physically he's still very fit. He's a marathon runner and is still able to run- thank God! It's all he has left from his previous life. Mentally is a different story and is akin to someone with dementia. Of late there's been more moods and less understanding.
For me, this group plus Carers only forum - Macmillan Online Community and Glioblastoma multiforme brain tumour - Macmillan Online Community has been a huge source of support. There's always someone around who gets it, someone to listen and someone to offer a virtual hug when you need it. 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.
I wish I had some words of wisdom to help with the mental health aspect of dealing with this rollercoaster ride of emotions. I feel as though I am just clinging on some days. On days like that though its important to take time for yourself - go for a walk, go to the gym, meet a friend for coffee, read a book- whatever you enjoy to help recharge the batteries. I also find journaling helpful. Seeing the words/feelings/emotions written down takes some of the power/pain out of them.
Hang in there. Stay strong. You are doing so much better than you give yourself credit for. Trust me on that.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
