Hello again, Ellamay
My cousin and dearest friend Joy was diagnosed in August, but I have not yet even begun this journey. However, I was the care person for my uncle, who died of cancer and I know how emotionally and physically exhausting it is. So much of what you say brings back memories..the doctors and nurses who don't listen, confusion, the sores on his arms... all of these things, Unckie had. I felt desperate and angry, all of the time. I really hope you get a support system in place now. When your life revolves around someone like yours does around Tony, when the time does come, it feels like the floor has been pulled out from underneath you. You feel absolutely lost. Joy(who now has ALS)saved me. She encouraged me to see a therapist on a regular basis while Unckie was alive, and when I was in free-fall after his death, that therapist probably saved my life. You journey does not end here, you have to take care of yourself. My prayers are with you and Tony.