I would like to send out my sympathies to everyone who is effected by this terrible disease. This is my first post and feeling desperate for any support that can be provided. My husband was diagnosed last September which was a shock to us all as he had no symptoms no headaches, We only took him to A&E as we suspected a slight stroke following very mild symptoms of slurred voice and slight droop to his face only to discover following immediate scan he had a tumour. We were lucky in the fact he was diagnosed and operated on within 2 weeks followed by the usual follow on treatment which he coped very well with. Since Christmas he has declined suddenly not in physical health but in mental capabilities, short term memory is lost and is showing signs of dementia which we were not expecting. He is now awake every night with sundown syndrome where he is very confused and walking around between the hours of midnight and 5:00 am in the morning, so lack of sleep is difficult to deal with along with the emotional stress and care that is needed. Can anyone else advise if this is normal with this disease and if this will get progressively worse.
HI Caregiver
a warm welcome to the community. So sorry to hear about your husband. Life's too cruel.
I supported my late husband throughout the 3 years of his GBM journey. A lot of his symptoms were cognitive and presented more like dementia than cancer.
I don't believe that there is a normal with a GBM journey. These tumours are particularly nasty. A GBM journey is an emotional rollercoaster for all involved. In my experience of supporting G things would decline a bit then stabilise for a while then decline a bit more. It felt at times like slowly walking down stairs and stopping off on every landing for a bit.
I wrote a few community blogs for MacMillan and I'd like to share a few of these with you-
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 that I can support with please just ask. I'll be 100% open and honest based on my experience.
For now though I am sending you a huge virtual hug and lots of strength. You are coping here far better than you give yourself credit for (you'll just need to trust me on that)
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
