5 weeks ago... symptoms included, Headache Unsteady on feet, irritable/mood changes, loss of peripheral vision, fatigued, confused.... all that he had ignored for possibly months. He is stage 4, no surgery, no chemo, no radiotherapy... just sent home to die, told he has only months. He ran a marathon 2 days before diagnosis and a half marathon 3 days after they told him he was dying. He is the fittest man I know. He's been on steroids for 5 weeks to reduce swelling on the 2 tumour, a 3rd was growing... they've slowly weaned him down to 2mg and as of Thursday he's off them altogether. I'm so scared, what does this mean, is this where he starts to decline towards the end??? Are they just letting nature take its course? I'm beyond devastated
Hi Edmund1
having those conversations is beyond hard but I agree it would be better to have them now. When the community nurse visited us on 28 Feb 2023 with some simple questions she got some straight answers from G that allowed a line to be drawn and a plan for further down the line to be established.
She asked him
"if you have a seizure/stroke that requires resuscitation, do you want to be resuscitated?" He answered No so a DNR could then be put in place.
"Do you want to die at home or in the hospital or in the hospice?" He answered the hospice although in fairness he didn't really understand what that was. He just knew he didn't want to die at home.
"At what point do you want to transfer to the hospice" He said when he could no longer do his own personal care as he didn't want us doing that.
They were tough direct questions but they were effective.
At the very least at the stage you are at it might be worth a call to the GP for a chat about what support is there when you need it and how you go about arranging it.
love n hugs
Wee Me xx
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