My husband (68) was diagnosed 5 weeks ago with no warning. Surgery not considered. Following biopsy he lost mobility and has never left hospital. He had 2 weeks radiotherapy but we are now done and no more treatment. He is too be moved to a hospice. He is still alert, talking and eating. How long will we have? I cant bear it. How can this have happened.
HI Sarah156
a warm welcome to the online community. So sorry to hear about all that has been happening so quickly.
I can empathise with the journey you are on with your husband. I supported my late husband (he was 50 when he was diagnose out of the blue) for three years. The speed of the start of that journey was totally overwhelming at the time.
To answer your question - as long as he has. There are no hard and fast timelines with these tumours. During the course of our journey the doctors gave us several timelines and none of them were remotely accurate. By way of an example, in late Feb 2023 we were handed off into the palliative care phase and the oncologist told us G had a few days, perhaps a couple of weeks. Even although we knew his diagnosis was terminal that was scary to hear. G lived for a further 8 months. Personally I feel it is kinder on everyone if they don't mention timelines.
Alert, talking and eating are all positives. Take each day as it comes and see where it takes you. Things may plateau for a bit or they could change in a heartbeat. The medical team will be able to advise you. G was under the care of our local community hospice team throughout the palliative phase and that made a huge difference towards the end of the journey. He spent his last 5 days in the hospice and those nurses ensured that his passing was as pain free and peaceful as possible. They are angels in disguise. The fact that as a family we had got to know them over the weeks and months made a huge difference too as it meant we weren't surrounded by strangers when it mattered most.
Please don't be too hard on yourself here. You have been thrown into the midst of this and likely haven't had time to process it all. All the emotions you are experiencing are perfectly normal. You're coping so much better than you give yourself credit for (You'll just need to trust me on that for now). I've written a few community blogs for MacMillan and thought these two might resonate just now-
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 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.
If there is anything I can support with, just ask. I'll be 100% open and honest with you based on my experience.
For now though I am 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
