Hi everyone, i've been here for a long while but never posted, but you have helped me nonetheless. My partner has been battling bowel cancer for the last 6 years, many many surgeries which led to double stomas and other health issues. He's had radiotherapy, chemo and most recently immunotherapy. the tumour that is left is too near major vessels to attempt more surgeries so the immunotherapy was to buy time, which worked for the last year, the most recent scan showed it has grown to the point where further treatment is not an option. In a video call from the hospital room he's in (he's been in hospital almost a year now) the oncologist said he has weeks, they will make him comfortable but there is nothing else they can do. I knew it was inevitable but i didn't expect it so soon, we've gone from "you have years left" to "you have weeks left" Sorry, i just needed to unload where I know i'm not alone here. he is so heavily dosed with opioids that he was barely there for the meeting. they say they are going to change his meds so he's not so out of it and to stop the severe twitching he has. I'm hoping we have the time to discuss where he wants to be to end his days. Thanks for making it to the end of this word dump, if you did, I just needed somewhere to lay it all x
The palliative team have changed his medication now, the twitching has all but stopped and I have my partner back again. They have very quickly (within hours it seems) organised that he can be home for however long he has left. Today Paul Satori came out with a profile bed and set it up and I've been told he will be discharged tomorrow afternoon. I've not heard from the hospital today, which has worried me a lot as i was supposed to be being put in contact with a support person to help me with any worries or help i will need going forward. Paul satori have given me a number to call to have an assessment for any nightly support we/I might need, which they said to organise the assessment for when he's home. I have been told that we'll have 4 daily visits from nurses (I'm assuming district nurses) and one visit per day from the ART team to change his syringe pump, which will run over 24 hours ( this is being trialled from Monday just gone) to make sure it is doing the job of controlling his pain before he comes home with it. I think i am just panicking because I like to have all the information so i have all things straight in my head and it feels like I've been thrown in here with no life jacket. I'm so scared that I'm not going to be able to care for him properly but I want him to be home with me. I'm hoping I'm worrying for nothing and all the care plans and contact numbers will be put in place before he comes home, it all feels a little overwhelming on such short notice. Anyone able to calm my fear with first hand experience of this?
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