Hello,
I'm not entirely sure why I am posting other than for a sense of community. This experience can feel so incredibly isolating.
My Dad was diagnosed with advanced prostate cancer that had spread to his bones and lymph nodes in April 2023. At the time, the Dr said he would have 12-18 months. His PSA at this time was 2000+ and he was told there was no cure. He was started on hormone therapy which worked incredibly well and brought his PSA right down to below 1, however it is now increasing quite rapidly. His last PSA jumped from 27 to 304 in 3 months and his latest bloods indicate it has spread to his liver. He is sleeping a lot during the day and his appetite is decreasing but he finds energy for his grandchildren and still manages to play with them and entertain them despite his limited mobility and energy.
I feel like he's had such limited input from his cancer team. He has a phone call to review his bloods every 3 months and that is essentially it. I believe they have mentioned hospice to him and he shut them down- a decision which I am trying to discuss with him as I don't think he understands the massive scope of care the hospice nurses cover, he just knows he wants to die at home so thinks hospice isn't necessary.
Should his cancer team be doing more? At this point, I cannot tell how long we have left. It feels to me like there's been a massive decline in his health in the past month or two, I don't know what I should be looking out for. Should I be encouraging him to contact the hospice nurses to get a plan in place?
This is just so hard. My parents tend to bury their heads in the sand a little and deal with the day to day rather than seeing the long term picture. I also don't know how much they take in during the appointments and they never seem to ask any questions. I just want them to be well supported.
I'm trying to manage this whilst taking care of 2 little children as well, it feels all-consuming.
Any advice and support would be greatly appreciated.
Hi Sweetpea92
Sorry to hear about your dad and the impact of this on all your family, we often describe cancer on here as a kind of tsunami.
I wonder if your hospice does a hospice at home service that might be something to support your all. Your parents would also be eligible for a needs/carers assessment from their local council. Sometimes having someone explain what you are entitled to can feel less like giving up control.
With caring for our children too it can seem difficult to find any time for ourselves, many carers find that this is something we need to become somewhat disciplined in because if we break then with the best will in the world we cannot help - I know I suffered in the past. I find the advice in your feeling when someone has cancer really quite helpful in recognizing the emotions and accepting them as valid can help make them a little less overwhelming.
<<hugs>>
Steve
