Hi there, just wanted some advice really. My husband had bowel cancer 3 years ago to which he now has a stoma. After undergoing surgery for perinneal cancer we found the cancer had spread to the brain. My hubby had invasive radiotherapy treatment back in June but we have been told the treatment didn't work and theres nothing else they can do apart from offer palative care. Hes lost mobility in his lower body because of long term steriod use and I dont feel we have had any support from the hospital whatsoever. Has anyone encountered similar problems. Is it worth asking for a second opinion and pushing for further treatment?
Hi ALz79dbd7
a warm welcome to the community. So sorry to hear about all that has been going on, What a lot to process.
I supported my late husband through the 3 years of his stage 4 primary brain tumour journey so an entirely different situation but I can empathise with the journey you are on. A second opinion never hurts so if you feel you would both benefit from it then I'd suggest you ask for one.
What does your husband want to do here? At the end of the day, it is his choice even if further treatment is an option. Hard as it is, you have to be led by what he can cope with and what his preferences are. In our case, G declined all further treatment after the first 6 weeks. It was a decision I had to respect hard as it was at the time. G was of the opinion that it was quality of life that mattered to him not quantity.
We were passed into the palliative phase at the end of Feb 2023 when the oncologist said he thought that G had a couple of weeks left. I was in bits but to be honest, being passed off to the local palliative care team was the best thing that could have happened to us as a family. (We had a poor experience with the hospital and oncologist too) Once the local care team were on board, I had a telephone number I could call 24/7 for help if I needed it. That alone lifted a huge weight off my mind. Our palliative phase lasted 8 months to the day. In that time though the local community nurses and the local community hospice team got to know us as a family and got to know G as a person. When the time came and he was admitted to the local hospice we were all surrounded by familiar faces and that made such a difference. The local hospice angels wrapped their arms around us all.
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 an sending you a huge virtual hug and lots of positive energy.
love n hugs
Wee Me xxx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
