Hello, I have joined this group as six weeks ago my husband was diagnosed with glioblastoma stage 4, and our lives have been turned upside down. My husband had Christmas/New Year and his 71st birthday in hospital, and we will have been married 46 years in 2 weeks. He has now been in hospital 4 weeks.
The treatment plan was to do a crainotomy to debulk as much of the tumour, and then radio/chemotherapy when he had recovered post op. Unfortunately he had a bleed a few days after the initial op and then had to have an emergency op to remove a blood clot. We have been told there is nothing more they can do as the cancer has spread to other parts of the brain, so we are looking at palliative care. I don't think my husband realises he is dying. The tumour is affecting his cognitive behaviour and he has lost his peripheral vision in his left eye.
I am now having to look at nursing homes to get the care and support he needs 24/7. He's not able to walk, has to use a sara steady to be taken to the toilet or moved to a chair, and his short term memory is really bad. It is so challenging and upsetting having to repeat myself to explain a nursing home is the best place for him to get the care and support. The information just doesn't seem to be retained, and he talks about coming home.
Has anyone else had the challenge of trying to support your loved one in these circumstances, and when they can't remember what you said the day before.
What palliative care support have you had? It is so cruel for my husband and for me and our family.
Has anyone had experience of the Fast Track Continuing Healthcare funding? If yes, can you top up the NHS funds to get a better nursing home?
Thank you
Hi Shorty
a warm welcome to the group. So sorry to hear about all that's been going on. Life's too cruel.
I supported my late husband through the 3 years of his GBM4 journey and can relate all too well to what your have described, especially the cognitive issues and short term memory loss. It is beyond frustrating to be constantly repeating yourself but bear with it. Try to remember that it is the tumour talking and not your husband.
G was only 50 when he was diagnosed and 54 when he died so a care home was never an option for home because he was too young. We were passed off to the local palliative care team 8 months before he died and to be honest, it was the best thing that had happened to us during the journey. We were put in touch with the local hospice team and the community nurses and I had a local telephone number that I could call 24/7 and know that help was there. That alone lifted a huge weight off my mind as I still had G living at home.
I appreciate that age is a factor in your situation but it may still be worthwhile asking to be put in touch with your local hospice to see if they can support with care. The hospice team in our case wrapped their arms around us all and were so supportive. Hospice can also offer support to you eg counselling etc. It also meant that they got to know us a family and when the time came we weren't surrounded by strangers. That made a huge difference to my son and I.
I have no personal experience of the Fast Track Continuing Healthcare funding but can I suggest that you call the MacMillan helpline as they may be able to assist.
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.
for now though I'm sending you a huge virtual hug and lots of patience.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Sending love and light and hugs. Hospice nurses are angels in disguise. I'm sure they're taking the best care of him
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
