Hi All
My partner has been diagnosed with stage 4 Glioblastoma for 10 months now. He's had debulking, radiotherapy and is now on palliative chemo. It's a very scary and stressful time, especially as he doesn't consciously accept that he's terminal.
Someone posted about how your loved one's personality changes constantly, it's so true and hard to keep up with the constant changes. Some days he is just himself but it dissolves quickly. Now he's tired and very constipated with the TMZ despite a very helpful pharmacist who has prescribed everything! It's now hard to keep up with the medication. I'm on my own with him and this. Looking for community support.
Daisybank
HI Daisybank
a warm welcome to the online community. So sorry to hear about your partner. Life's too cruel.
I can empathise with the journey you are on here. I am supporting my husband through his GBM journey since his diagnosis in Sept 2020. We are further down the road than you. He's been under the local palliative care team since the end of February. this year.
Denial is one of G's key coping mechanisms. He refuses to talk about his condition. Says that's negative and he shuts the conversation down. I've spoken to our hospice nurse and she has assured me its a common reaction, It doesn't make it any easier for you (and me) to deal with day to day though.
I can't really comment on the personality changes being directly linked to TMZ as G refused all further treatment after the initial 6 weeks of oral chemo/radiotherapy in combination but the turmour(s) themselves can cause it depending on the area of the brain that they has been impacted. Steroids also seem to impact personality. In our case they make G irritable and at times quite nasty but they are a necessary evil for now.
This is a safe and supportive space so please reach out here anytime. There's always someone around to listen who gets it, someone to hold your hand and someone 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.
Please make sure that you are taking time to look after yourself here too. Taking "me time" to recharge your batteries isn't selfish- it's essential. Trust me! Almost 3 years down the line and I don't mind admitting I'm exhausted - mentally physically and emotionally. This journey is an emotional rollercoaster so please take the time to go for that walk, to go for that coffee/drink with friends, or to sit and read that book. Take time to do whatever it is that makes you feel like you.
For now though I'm sending you a huge virtual hug and lots of positive energy. Stay strong.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Hi Daisybank,
Welcome to the group. I support my wife who was diagnosed last June and has been through the debulking, radiotherapy and just finished the TMZ course.
She doesn't accept the terminal side of things but I guess in some ways neither do I. We still talk about plans for when the kids are grown up as the alternative of her not being here is just too grim. She's now treatment free and we go from scan to scan just hoping that there hasn't been significant growth.
I'd definitely echo Wee Me's advice about looking after yourself and getting a break when you can because it is all so exhausting. I left my wife with a close friend yesterday and went with some mates for a bike ride. Just switching off for a few hours really helps renew my strength to deal with everything.
The personality changes are there too to some degree but in her case it's more the cognitive impairment that's difficult to deal with. It's very similar to dementia and the thing the children and I have found hardest to accept. It's also the thing we found hardest to get support for but in the end her health insurance found us someone we can talk to.
I'm sending you a virtual hug and I really hope you find the group useful for questions or just venting how you're feeling to people who understand.
Best wishes
Chris
