Hi my partner was diagnosed with a glioblastoma 3 months ago, she was sent home without any treatment. She has now been in a hospice for 4 weeks as she got a UTI infection. The last week or so she has been crying and wailing none stop. Is this usual with a glioblastoma? It is so distressing to watch and it makes you feel so helpless.
Hi CarerT
It sounds like a very distressing time for both you and your partner.
I don't have any experience with glioblastoma but I thought I'd pop in to mention that there's a dedicated glioblastoma forum that you might like to join and post in as you'll then connect directly with other patients and carers with this type of cancer.
If you'd like to do that just click on the link I've created which will take you straight there. Once you've joined you can start a new post in the same way as you did here and join in with existing conversations by clicking on 'reply'.
Another forum which you might find helpful is the carers only forum which again I've provided a link to.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
HI CarerT
a warm welcome to the online community. So sorry to hear about your partner. Life's too cruel.
I supported my late husband through the three years of his Glioblastoma journey. I reached out to this forum a couple of months into that journey and have read countless posts. One thing I have learned from that and from personal experience is that with Glioblastomas there is no normal. Everyone is unique and each tumours unique too. The person's behaviour can be impacted by whereabouts in the brain the tumour is and what functions that area controls. In G's case it was speech , language and understanding that were compromised. He lost the ability to read very quickly and struggled to understand more than a simple sentence. His symptoms for a long time were more like dementia that cancer. Medication can also alter mood/behaviour. Steroids made him really nasty at times.
Can I suggest that you speak to her Dr and see if they can suggest something to help calm her down? Its so distressing to see them upset and feel helpless to do anything to help, In G's case, latterly they prescribed him a low dose of Lorazepam to calm his agitation. It worked really effectively.
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. This is a tough journey but 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 try to take time for yourself here too to keep your wee batteries charged. Don't underestimate the toll this is taking. Taking some "me time" isn't selfish - it's essential for your own wellbeing.
For now though I'm 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
