New to forum

Hi CarerT welcome to the forum and I am so sorry to hera your news and the way in which you have been treated which is far from acceptable. Have you complained to anyone at the hospital about how you have been treated as this is something that could potentially  help you and others who may be in the same situation as yourself in the future. Please be assured that you are not alone and we are here for you. Do you feel able to give the Macmillan Line a call as they may be able to offer some information for you? They are open 7 days a week from 8am-8pm and are contactable on 08088080000 .   

HI CarerT

a warm welcome to the online community. So sorry to hear about your partner. Life's too cruel.

Communication is key when it comes to diagnosing anything especially Glioblastoma as you need to fully understand all aspects of this and what you can expect over the coming weeks/months. I'd strongly encourage you to write down all your questions, fears and concerns ahead of the next appointment, whether that's with the current team or when you are seeking a second opinion. There's no such thing as a silly question. If its preying on your mind, ask.

I supported my late husband through the three years of his GBM journey and remember only too well how lost and confused I felt in those early days. This community 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.

You might also want to explore a couple of the other groups that I personally drew a lot of support from 

Glioblastoma multiforme brain tumour forum | Macmillan Online Community

Cancer carers forum | Macmillan Online Community

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.

for now though I'm sending you both a huge virtual hug and lots of positive energy

love n hugs

Wee Me xx

We are in a similar situation, although he had surgery they didn’t get it all and they said the radio didn’t work and sent us home with palliative chemo after a big seizure, it went from them telling me we’d lose him within days in March to us being on 6th round of chemo but we get told no more than come back in 6 weeks, is so hard to know as they don’t seem to know. We got some support off hospice then they discharged him as they classed him as “stable” but that’s been me managing his meds and symptoms and I feel I maybe should have pushed them more to be present and help more when we are having really bad days, every day is a new day of challenges of not knowing it’s so frustrating and can be very lonely !