Hi
I posted in this forum in September when I found out my mum had stage 2 liver cancer and received lots of support and advice which was most helpful. I am back for further advice if possible.
So.......
Since September my mums condition has deteriorated rapidly. Her primary lung cancer was doing well and was contained and she completed 2 rounds of immunotherapy treatment to deal with the small tumours on her liver. This treatment unfortunately has been unsuccessful. Additionally within this time she had a scan (which we had to beg for) to explore a chronic pain she was getting in her shoulder which had been disregarded as possible bursitis- this turns out to be shoulder, hip and back cancer! 
Mum ended up in a hospice 2 weeks ago for pain management. I feel really let down by her community medical team as they let her pain get to crisis point before offering this support, they did not manage her pain appropriately and I feel very under confident with their ability to provide further medical care back in the community.
My mum entered the hospice after collapsing and within 4 hours they had a syringe driver in place with the correct pain relief, anti sickness drugs and steroids.
the hospice has been amazing, although we have been told the cancer is now aggressive and we are looking at weeks, it’s just amazing to see my mum pretty much pain free.
so last week we had a family meeting where we were told that the hospice was only for pain management, and we needed to start looking at planning for the future and moving home. We were told that whilst mum was still experiencing some pain this wouldn’t be happening over night. And risk assessments etc would have to happen.
I live quite far away from home so can’t go to all meetings etc so I was really shocked today when I hear from my dad that another meeting has been held regarding mum going home- because mum only scores high on medical illness but moderate on everything else we need her to be home sooner rather than later. They just said we will have to fund her care and just gave my dad a lust of numbers to call regarding carers oh and to make a list of things we may need to support her.
I'm so shocked by this, the hospice has been so amazing and has been medically brilliant in sorting out her pain relief, however I now feel we are being thrown into the lions den! We have no idea where to start in terms of what we need, how to manage and obviously a real lack of trust in the medical care she will receive whilst back home in the community.this is end of life, she has been told she has weeks! We are all processing this, and now she’s being sent off on her merry way!!!! I’m very confused!!
i am just wondering has anyone had any experience of this? If so any advice or guidance would be very much appreciated! I just want my mum to die with some dignity and happiness! She’s happy where she is- but if this is not meant to be how do we make home the next best thing???
thanks in advance x
