My partner was diagnosed with a glioblastoma 7 weeks ago, she was sent home with no treatment and palliative care. The lack of care and communication has been terrible with the hospital, now seeking a second opinion, i feel very alone and confused. I have been looking at Stereotactic radio treatment, just need yo find the right consultant ASAP
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 .
gail
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
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
