Hi,
I get comfort from reading your journeys with this cancer.
we reached a significant milestone yesterday with my brother S and I feel really sad. It is just over 4 years since S’s diagnosis. That makes him a long term survivor. he had open brain surgery, oral chemo, and was good for a while just some speech and memory issues. It is a grade 5 glioblastoma. It started growing again and he had high tech radiation on the Cyberknife. It gave him another year or so although his mobility began to decline along with his speech and energy. That accelerated quite dramatically in the last 4 months and he’s just waiting for a wheelchair. More recently new growths began appearing. He’s been having oral chemo. This week they decided the cost in quality of life is too high so no more treatment , just palliative care. He’s relieved. He’s been too fatigued to keep his eyes open day and night.
it’s tough on us sisters because he played the role of father to us. He has always been a formidable presence and had our best interests at heart. He is still enjoying his food for now and green spaces. He understands a lot but can barely contribute to conversations. I wonder how long we have him and what we should do in the light of that. Thanks for your time. Sending you all love and strength and courage.
Hi
a warm welcome to the online community. Sorry to hear about the changes in your brother. Four years is a long time to live with GBM so I'm glad you got so much time with him.
There appear to be no hard and fast timescales with regards to how long the palliative phase lasts. This journey takes as long as it takes.
In our case, my late husband was passed into the palliative phase at the end of Feb 2023 when the oncologist advised us he thought he had a couple of weeks maybe a month or so. In the end G got 8 months. His tumour impacted his speech language and understanding and it was more like living with someone with dementia than cancer.
I'd encourage you to get to know your local palliative care team and if its the route you ultimately plan to take, your local hospice community team. We would have been lost without that support. The community nurses kept int touch with a weekly phone call and the community hospice nurse originally popped in monthly but gauged the frequency of her visit on G's health. Having that support network meant when the end of the journey approached that as a family, we were surrounded by people who knew us and not strangers. That made a huge difference to me.
The word hospice scares a lot of people but it really shouldn't. Those angels wrapped their arms around myself and my adult children as well as taking great care of G. They gave us so much support both before he passed away and afterwards.
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 strength.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
