I feel bad posting on here...i have been away so long. My husband and i have have been in a bubble of treatments and battles for the last two years and its become an almost comforting way of life... Ok this now not working so..lets try try this combination. And then....last week they said. ' thats it ..we can do no more. Go home and enjoy the rest of your time together...you must be glad you dont need to come for treatment anymore'
Well im not. The treatment was our lifeline..our hope... We are adrift now. No pills no chemo no appts with experts...just us.
What the hell do we do now...how do you deal with this stage..
It feels like we should be do something ..trying something.. What do we do guys??
Hi jet, so sorry to hear what's been happening. I have no real answers but because my partner is deteriorating rapidly and we have been referred to palliative care I thought I would comment. I understand your feeling of being set adrift. My partner has had 3 monthly oncology appointments and so much deterioration happens in this time. The wait for scans is so long. It was such a relief when his gp asked the palliative care nurse to call. We have her number and they even have a weekend staff. I have also looked on the incurable and end of life forums and have read many amazing posts of people who live relatively normal lives, way beyond the lifespan they were told to expect. You may find them helpful to read and perhaps join. I wish you both well, sending hugs, Pam xx
Dear both. Stepping into The End Game feels very mixed for me. On the one hand the end of hope or the taking away of false hope and on the other hand a chance for my partner to face death square on and try and live full days. But being released from treatment services might need a bit of adjusting to. What fills the gap. At first it felt like staring into a big dark hole. Like Needing Friends I find the palliative care team support like a safety blanket. And having things in place practically leaves room for some emotional preparation and also as much bloody fun as possible. M partner talks of the proportion of time left. So spending that time more wisely has been his strategy.
I am learning that whilst we are in the last room on the cancer board game there is a lot of living still to do, however short that is. I also have to remind myself to step back, step away and put myself aside so I don't get in the way too much of my partner having the chance to fill his time with things that nourish him. I hope you find a way of making the adjustment.
It is so good to hear that others are suffering the same issues as with myself and my husband - after all the waiting for results ect I feel we have been abandoned. I have been advised to contact Macmillan nurses but not sure how they can help and my husband does not want 'strangers helping', We haven't yet been told its terminal cancer but only that its not curable - just don't know what to expect next.husband is being cranky due to meds and I am trying to remain the calm positive one. thank you for this community x
Hi there, it seems many of us feel the same. My partner is also cranky with meds, it's a daily battle. I think maybe the Mcmillan nurse can help you even though your husband is reluctant at present. You are as much a person to be cared for, as you are the one keeping things together. Keep posting, we need each other xxx
thank you for hearing my plea for someone to share problems with - today it all kicked of. went for normal pre op assessment to be called back to hospital just as we arrived home, issues now with kidneys. Feels like one thing after another I know it must be terrible for my husband its so frustrating when you leave them and some of the staff seem not to know what they are doing, Same old moans I know but I'm glad I am home and not him staying in their tonight. thank you again for listening xx
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