Dear all,
I am outside the UK at the moment, supporting my dearest dad in the last stage of his fight against prostate cancer.
It has been an excruciating journey for us and I can only take small comfort in knowing that I have helped put in place some palliative care from a local hospice charity (with limited resources) that has been amazing in their help and support. Still, I have some questions that keep nagging at me...
Right now my dad's cancer has mostly metastasized in his bones, particularly the spine, hip and ribs. There were small tumours detected in his thorax and liver in the last scan in Oct. His urologist had been giving him false hope, so being told that nothing could be done in Oct was a huge shock to him, and it has been downhill ever since. We have not had time to have very many conversations before my dad went downhill and I know I will take years to get my head around this all....
He has refused to take his hormone tablets (apalutamide) for over a month. He had bad pain but we sorted him out with a microdose of fentanyl, taken via a patch (half a 12 mcg patch) every 3 days. Apart from thyroxin, he takes no other medication apart from daily laxatives to deal with the side effects of fentanyl. He seems comfortable and does not complain about pain. But since he was put on the microdose of fentanyl, he has refused to speak much at all. Gestures and nods/shakes his head to questions. Although he can use his arms and hands perfectly, he wants to be spoon fed. All this is taking a psychological toll on us because we cannot understand what he is going through.
The hospice just tells us to let him do whatever he wants. He has off and on bouts of confusion, and one incident recently where he seemed to be hallucinating and was so frightened we had to take time to calm him down. He dips in and out of sleep - mostly not very deep sleep - but since he rarely talks, and is confused more and more, I feel I have lost most of him already. Struggling to cope and understand. The hospice doc suggested that he is experiencing delirium and that this cannot be a side effect of fentanyl since he is on such a low dose. But we have noticed the dramatic personality changes (not speaking etc) immediately after being put on morphine - later switched to fentanyl - and am struggling to think it is entirely coincidental.
There have been no visits to the hospital since, no bone injections or blood tests and no way to ascertain where and how fast the cancer is progressing. Since he is on palliative care, their aim is to keep him as comfortable as possible, and as for the family, we don't really know what to expect, and I am living from day to day, experiencing a terrible roller coaster of emotions. He eats very little and does not drink enough, it has been this way for almost a month now.
I can't get the sense of pervading failure out of my mind, that I have somehow failed him in failing to find a better solution, to try and figure a way where we can communicate sensibly.... but I am fearful that we are already past that stage!
My dad feels angry with doctors, feeling that they misled and then ultimately failed him.
Worst time of my life, for sure.
I don't know if this sounds familiar to anyone here.
Ru - devastated does not begin to describe it