Update from September post

My last post here was at the beginning of September after an appt with Oncologist at the end of August telling us active treatment was bring withdrawn & giving prognosis of 8-12 weeks. On Tuesday this week my darling husband passed away in my arms in our local hospice, he managed 6 weeks & 4 days from our last oncology appt. He had a permanent drain placed in his abdomen on 11th September after hospital totally cocking the whole process up the week before, from that day on he was never the same again. Mix ups with who was looking after drainage, how often to drain, no drain supplies, incorrect fitting of drain cap causing profuse leakage......the list goes on & on ! My husband lasted just over 6mths from diagnosis after initially being told that all evidence was that with 'urgent'treatment (took 8 weeks to see oncologist) prognosis was 18mths to 2yrs possibly longer. Our problems started once his care was transferred from an eminent regional specialist to our local hospital. We faced mistake after mistake. Never saw sight or sound of a Macmillan nurse & only had a CNS for the last 6 weeks of his life after I had to research & track one down. We received no support from anywhere for the entire 6 months, (treat quite rudely on some occasions- complained to PALs), my husband deserved better than he got. At the end he finally received the love & care he deserved from our local hospice where he spent his final 2 weeks with me able to stay there with him. I am heartbroken & devastated at losing him but I am angry that he/we have been so badly let down every step of the way, i am convinced,  as was our eminent liver consultant, that my husband could have reached his optimum prognosis if he had received better care..Even in death & the new system now in place for certification & registration of death has failed & I've spent 2 days chasing the medical examiner & registrar. I am compelled to ask if this shoddy piecemeal treatment is because Primary Liver Cancer is not a 'trendy'  cancer with no public platform? Anyway, my husband has now travelled his road to its end & I am now starting mine. Best wishes to everyone else travelling their road here & hope for a better experience for you all. Modge