This is a bit strange for me to ask for help or support, I'm normally OK but I'm at a point where I now feel like I could have a break down at any minute. Sorry for the rambling but I really need to just vent and get it all out so I can try and make sense of things. So I'll just go with it. having supported my husband for the last 12 years with a rare form of lymphoma its been tough but being the way I am positivity has always been key and we've always got through it even in the darker days. In March this year we were told there was nothing more that could be done and palliative care was what was best for quality of life it was heart braking but we just got on with things . In July lymphedema took hold and life changed massively. He moved into the kitchen and slept in a chair. Daily tasks such as filling the kettle were a struggle, having to do everything around him and if he was sleeping it ment meals couldn't be cooked until he woke up. Over the last 4 months he has needed support with showering, dressing and cutting up his food. I work 3 12 hour days and have 2 children and a dog to look after, it was draining. His moods were unpredictable due to the high dose of steroids he was on which ment we were living in egg shells so not to cause arguments, he slept a lot and needed more and more help with things, supporting him wasn't an issue, I'm his wife and he needed me but it was difficult for him being a proud man to have help with showering but together we just got on with it . Then it got to a stage a few weeks ago where he just slept for days without eating or drinking and the reality kicked in that this could be things progressing towards the end and I started panicking about all the thinks we hadn't talked about, you know those difficult conversations, we still haven't had them but they weren't conversations he wanted to have so I had no choice but to let it be . Then as if by some strange magical intervention one day, almost over night the swelling in his legs had gone right down, he was awake, alert and back to his normal self, even venturing into the garden something he hadn't done in weeks ! And sleeping back in our bed!! It was amazing!!! The change in him was night and day!! But I can't get my head around how I'm feeling, I'm so confused by his sudden change, I'm constantly worrying about him and if this is something else going on, I've spoken with the palliative care nurse who is equally as baffled as lymphedema doesn't just go away without any intervention. It sounds stupid now I'm typing this but I should be doing cartwheels and be extatic to have some normality back in our lives and to have my husband almost back to normal but instead I'm consumed but what I can only describe as some part of grief, anxiety and worry, all day everyday - it's exhausting but I can't switch it off, why do I feel like this? Why can't I just accept it for what it is and enjoy the time we have? Has any one else ever been through this?
Husband 5 years in with prostate cancer, now advanced with multiple bone mets (causing 2 spinal cord compressions) and skull mets (causing bleeds). Steroids have brought him back from the last bleed and he is remarkably well apart from double vision, numb chin etc. So I am very grateful for that but I recognise the confusion and worry you express it's all very well to say 'live for the moment' but it's so difficult. I hope that just acknowledging the difficulty helps and that you can enjoy the good times. There is no 'should' to feelings and I am in awe of you coping with work, children and a dog as well! Sending best wishes and hugs.
Bless you, you haven't had it easy either, I thinks it's worse because we've been in this situation before, a few times actually but there was always a plan b or a trail that would pop up, but now it's real and because I've never experienced "end of life" care before and don't know what to expect every feeling is amplified. When my daughters friend passed away at the age of 12 after a long battle with cancer, I remember talking to her mum and she said "it's a relief now, it's been a long hard slog" and I rember thinking what a strange thing to say. But now I get it, it makes sense how she was feeling. I feel guilty for feeling the way I do, like I'm being selfish or inconciderate at times. Like I'm grieving who he was and what we had, and feeling guilty for wanting to do normal things together knowing that he can't anymore. It's exhausting, I get a bit frustrated at times having to do everything, but then I have to remind myself he can't help the way he used to, he does try to be fair.
