Hi
New to this group, and am really struggling.
My husband suffered a large seizure in December , CT and MRI scans followed, and was thought to have meningitis or encephalitis. On 20 Feb he was told he had a grade 4 glioblastoma.
The neurologist told us it was incurable and inoperable and without treatment he had between 3-4 months to live. The oncologist said that it had spread to so much of his brain that the radiotherapy would have to cover his whole brain and would be extremely toxic leaving him bedbound and in pain. My husband has opted for quality of life and is now under the care of the local palliative care team who are absolutely wonderful.
I have given up work to care for him and I watch him deteriorating; so much medication, mobility issues, personality changes, so many changes. He cannot be left on his own as his seizures are not under control. Our sons do come and stay when their work allows but I feel so lonely and cut off. I get terrible feelings of anxiety, and although I stay positive and smiley when he is there, when I am on my own I lose my breath and often just want to cry.
I feel that I am just waiting for him to die which I find very upsetting as he is my world.
Has anyone else experienced this?
HI AnxiousL
a warm welcome to the online community. So sorry to hear about all that is going on.
Many of the members of this group will be able relate only too well to your situation. The gist of my story is in my bio but I supported my late husband throughout the 3 years of his GBM journey. He was 50 when he was diagnosed in early Sept 2020. At the time he was given 3-4 months without surgery. He had the surgery and 6 weeks of oral chem/radiotherapy then refused all further treatment. That was a decision I had to respect.
Seizures, personality changes, mobility issues, cognitive issues are sadly part and parcel of this rollercoaster ride but if they can get the medication balance right, things could stabilise. G was passed into palliative care at the end of Feb 2023 and given a few days, a couple of weeks at best. In August, he had an issue with focal seizures and low oxygen levels and was admitted to our local hospice . Again we were told to have our final conversations as he likely had days. He came home a couple of days later. On 23rd October he was admitted again to the hospice and we knew this was the end approaching Those hospice nurses were absolute angels and offered so much love and support to G, myself and our family. I guess what I'm trying to say is that timescales are best guesstimates based on averages and are not set in stone so please try not to focus on that aspect. Gauge for yourself and with the input of the palliative team where you are at in the journey.
All those feelings of loneliness and anxiety are perfectly normal so please don't beat yourself up over them. Don't underestimate the impact your husband's diagnosis has had on you. It takes time to process it and supporting him is an exhausting journey - emotionally, physically and mentally . I get it. You feel completely and utterly useless to do anything but in actual fact by still being there and holding their hand, you are doing an amazing job. I wrote a couple of blogs for this community a couple of years ago now but they may resonate 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.
Promise me something - you'll try to take some time for yourself here too. Me Time isn't selfish- its essential to help you keep yourself in the strongest position to support your husband. So take time to read a book or go for a walk or a coffee catch up with friends. You need to keep your wee batteries charged here. Trust me on that one.
For now though, I'm sending you a huge virtual hug and lots of strength. You're coping so much better than you give yourself credit for here. (You'll need to trust me on that too). You will get through this too. I'm not saying it will be easy but you will get through this journey.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
