My Mum passed away on the 14th August 2024. Everything happened very quickly really, she had pain in her hip and gradually over a few days couldn't walk. Once in hospital we found out she had lung cancer that had spread to her spine causing metastatic spinal cord compression. So she was then in hospital for the last 8 weeks of her life. After the one off dose of radiotherapy on her spine she was sent to a rehab hospital to try to improve her mobility while we waiting for the biopsy results to see what palliative treatment would be available. Initially her mobility was starting to improve she could get out of bed and onto a chair/commode using a sara steady, the biopsy results came back inconclusive after 2 weeks so they said she would need to have an endo-bronchoscopy instead. While waiting for this appointment to come through her mobility got worse so that she could only be moved from her bed with the use of a hoist. One of the main issues with all this is that the acute hospital (doing biopsies etc) wasn't part of the same trust as the rehab hospital she was in so they couldn't see each other's systems and therefore my mums notes etc so the communication was poor. Therefore it was a week before the hospital realised that her mobility had got a lot worse so palliative chemo would not be offered anyway so waiting for the other biopsy was pointless, so it was at this point we asked if she could just come home. This was agreed but again the process takes so long, I understand that they are stretched but all this then means that my Mum took a turn for the worst and ended up in the A&E of the acute hospital and then passing away the next morning without us there as we weren't allowed to stay and no-one rang us to say she had deteriorated until it was too late. So I feel guilty that I didnt do more research myself into whether she would get treatment as if we had realised sooner that she wouldn't, I could have asked for her to come home sooner and she would have had at least a week or two at home with us then before she passed away, she wouldn't have been on her own and we could have seen her for longer than 2 to 3 hours a day as that was the only visiting allowed at the rehab hospital. Also I think we were all so focused on just getting her home so we could all spend proper time together not being in a clinical setting that we forgot to savour the last weeks we did have with her, day all the things we wanted to, ask the questions we wanted to as we were saving it for when she was home and she never made it! The fact that she had to spend so much time alone those last 8 weeks due to visiting hours and then she was also on her own at the end due to us not being allowed to stay (why didn't I just ignore them and stay) or told to come in when I rang in the morning to see how she was only 2.5 hours before she died is really eating away at me. Was she in pain, was she asking for us, did she know she was dying as the night before we didn't think she was, she was still talking, trying to eat bits etc. I also keep seeing stories of people saying that people wait for you to leave to save you from the pain but Mum died 16 hours after we left her and only 1 hour before visiting hours started so I think she was fighting really hard to see us again but didn't make it and that pain and guilt is unbearable.
Sorry for this very long story, I don't really know what I'm ask8ng I think I just needed to get it all off my chest and to see if anyone else has experienced anything similar and how they have dealt with it?
Hi LittleWren
So sorry to read about how your story ended. My dad was ill for a long time though not cancer and it ended up with us having him going back and forth between care home and hospital. My sister rang one evening to tell me he was near the end and when I drove to see him he died 1 hour before I got there.
On the one hand it was a relief that he was no longer suffering, then the feeling of we no longer had the burden of care and then the guilt about feeling caring for him was a burden.
It is my wife with cancer and we have had something of a long story - totally get about issues with different hospitals indeed sometimes getting different departments to talk to each other seems close to impossible.
It can help to talk, or even type on here and I certainly found things got easier as time went by when we could remember all the good times we had.
<<hugs>>
Steve
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