My husband was diagnosed with ALL at the end of last year. He has recently undergone a BMT and after spending most of this year in hospital (well, three different hospitals due to complications with treatment) is finally home. Considering everything he has gone through, he is doing really well. But...
We are both mid 30s and have two children under five. To say it has been tough managing things alone is understatement of the year. I'm surprised I haven't had a breakdown. I have had some family support but to be honest, no one really gets it. His parents are so negative and emotionally unaware that it's impossible to have any real discussion with them, my family try but again, at the end of the day they can leave and get back to their happy lives. Ditto friends. Me and the kids are stuck here 24/7.
Obviously hubby has been through so so much, and it would be odd if it didn't change him in some way. But, my goodness, I just wish he'd be a little grateful sometimes! I am exhausted, emotionally drained, bored (as I am so limited in what I can do between caring for him and then the kids), sick of washing and cleaning due to the BMT requiring everything to be spotless and germ free, and so tired of being criticized! He is short tempered, refuses to discuss the future, complains about the kids and their behaviour, when much of that is a result of him not having been here and going from hands on dad to never there/ill. They are little and confused!
So - how do we get past this? I have tried to bring it up a couple of times but then feel selfish myself as I'm not the one who is ill. But by the same token, it's not like any of this is easy for me and I have worked my backside off holding things together. He really would be stuck without me as he can't look after himself, can't drive, needs monitoring etc. I just feel taken for granted and rather like a maid. But it feels like all he over does is complain and bicker. Anyone else experienced the same?
I read all the comments and I can relate to every thing that is said. I am a carer for my partner who is 65. ( I am 55). We  have been together for 4 years and he had his bladder removed in May due to bladder cancer that had became invasive after being superficial for over 27 years. We have had endless problems with his stoma as the bags are leaking time and time again.  On top of that last week we were told that despite the scan after the operation being clear of cancer , the scan on 21 August now shows small cancerous  cells  in his lungs and a  couple on his liver. To say we were devastated would be a understatement.  He now has to decide if he wants chemo again of just be monitored  by scans and see if the cancer progresses.Â
I took early retirement to look after him. He was always such a positive man, very fit and active, Â but the operation and this new diagnosis has understandably changed him. He has aged so much. The words from Rooster sum up my situation so well ' I don't enjoy being a carer . I do it because I love him so much but I don't always like him'.
I do all I can to help and support him but it never seems enough. I wonder what else the future holds for us.Â
What I do know is how helpful and supportive this forum is. I feel I am not alone and I do realise that I am luckier than most in that my partner still has a chance unlike so many others.Â
To all the Carers on here, Â You are truly wonderful. Xx
hi, ive just read your post and it couldve been me writing it. my husband was diagnosed with bile duct cancer last august and had to have a livert ressection.after he came out of hospital things slowly started getting back to some sort of normality then 3 months ago was rushed into hospital with sepsis and like your other half it was touch and go as to wether he'd get through it, he spent 3 weeks in icu and another 2 months in hospital because they couldnt decide how they were going to drain the abcesses on his liver which had caused the sepsis in the first place. they decided to fit drains into it and finally sent him home with them in but the man that came home is not the same man that went into hospital. He too does nothing but moan and complain about anything and everything, he gets really nasty at tmes and says really hurtfull things to me and he seems to forget that if it wasnt for me he would be on his own with this as he's pushed all his friends away and we havent family that could help him either. i just feel emotionally drained with it all, i m just glad ive found this group because now i know im not the only one dealing with this.
crimsonred, let him know when he's being cruel and then walk away from it whilst he considers what he's said. Then go back when you're ready, as if nothing's happened (you never know he might even apologise, mine never has but he has started to mention how it all affects me too). It's worked wonders for me, I think it makes our loved one's stop and think, they also need to know that their illness isn't just about them, that it affects you too. Just because they're ill doesn't mean they can turn into bullies.
The problem is that we feel so bad for them and so guilty all the time about things, that we tend to let them get away with things. We need to stop doing that and letting them know.
I've been feeling very sorry for myself these past few days and am very glad I have read this thread. It is so good to know I am not alone in feeling like this. I'm very disappointed with family and friends who no longer ask how things are, only my mum asks and is supportive but can't offer practical help as she is housebound.
I do feel guilty that I get cross with my husband, when I feel that he expects so much from me. I am unhappy that I feel downtrodden when he enjoys being "mothered" and expects me to plan, arrange and make things happen. I wonder where my life has gone.
When we started on his Myeloma journey we were told he would have induction treatment for 4-6 cycles and then SCT and then we could get on with our lives. It hasn't happened like that and we are slightly in limbo. I think perhaps that is the root of my problem - I can't see the light at the end of the tunnel.
I have read all these post with interest and feel very sad for everyone and your situations.Â
Paul and I have had a very close relationship, but since his cancer diagnosis I have noticed a "distance" developing between us. Maybe this is the start of some natural progress to prepare us/me for the inevitable end.
I am frustrated  having to take on more and more responsibility. Is he stepping back in preparation for when he's not there? Not conciously. Or is he just not up to doing it. Sometimes I think I am living with someone with early dementia.Â
Doing stuff on our own helps with some normality and certainly meeting with others in a similar situation helps.
My best wishes to you all. We have no real choice but to hang in there as best we can. X
I used to walk around like everything was fine, but deep down, inside my shoe, my sock was sliding off.
Now I walk around and everything is fine.....one day I am going to by new socks with strong elastic......but in the meantime I am learning to stop and and pull my sock up!
You're allowed to feel sorry for yourself Homebird. These threads and posts are good for letting us know we aren't alone and are dealing with similar situations and things. We also need to know that we still matter as we get forgotten with all that we are dealing with and there's so very little help. My family are crap so I have to take what I can!! One of my closest friends has sent me an e-mail every day since we found out my husband's cancer is terminal. The e-mails are of all the silly, mundane and wonderful things that happen in her life. I don't have to respond but sometimes I do when I feel like it. It's just nice to know someone cares and is thinking of me. It means a lot, it really does.
Life sends us a few curve balls every now and again and we're just expected to get on with it. My husband always says that life isn't fair. Then there's always that one person that's so much worse off than yourself, then for me at least, it puts it all into perspective. I pick myself up until the next time I trip over the self pity I try so very hard not to wallow in. It's hard and each days gets harder. The light at the end of the tunnel for some isn't the end we want, because we know that means the end of a lot of things and our lives then change forever.
Take care, make sure you make some time for yourself and get a break. x
I think you are right that a 'distance' can develop, even between the closest of couples. I think that it is inevitable in some ways. One person is very sick, and their attention necessarily turns inwards to some extent. So much of their strength has to be devoted to just getting through the days, and that strength is being whittled away by the failure of the body. The 'side' effects of the drugs, especially the poison of chemotherapy, also attack the brain and I believe, can alter the balance of the body so that the personality changes too.
The other person is not sick, or at any rate, not mortally so. They are very, very tired, usually, from all the physical demands of looking after people, they are deeply distressed, and often, usually, afraid; but they can see a future.
I can't offer you much comfort, and no solution, except that comfort that comes from knowing that what you are experiencing is part of a pattern, and not some terrible affliction which has singled out you alone.
Having others put into words how we are all feeling helps enormously. I think my low mood stemmed from a sleepless night when hubby went to bed with a headache and although his temperature was normal I was fretting that an infection was brewing.
I need to let go of some bitterness I feel concerning a friend I had from schooldays. She got married young whereas I got stuck into a career so we drifted apart. She came back into my life when we were in our late 40's as she was looking for support during her breast cancer journey. I gladly supported her through this and am happy that she survived and is now living life to the full. Sadly, she has now distanced herself from me. I know she is busy enjoying holidays, cruises and grandchildren but surely an occasional text or email wouldn't hurt? Well, I've got that off my chest so now I can let it go.
Hi everyone, thanks so much for all your messages. I'm sorry I haven't been back sooner. Some days I don't want to think about cancer, despite it being there 24/7. So - we have had a slight improvement here in that when I posted before, my husband had just had a final round of chemo. I'd sort of forgotten how much it took it out of him as he hasn't had any for a few weeks since the transplant. Now he's over that hurdle his mood is much improved and he isn't quite so tired, though he's still tired from the transplant in general. His one hundred day biopsy is coming up and we are hopeful but prepared for bad news at the same time. It's like there's an axe permanently above our heads...
So much of what everyone above has said has resonated in so many ways, particularly the comment about loving but not liking, which reminds me of how I can feel about my children on bad days! Sometimes though I wonder how much longer I can keep doing this. I want a decent marriage, for my children to see us being happy, for them not to have to put up with grumpy daddy. The dynamic is all off. It's like he can't read the kids any more and at times, it's easier when he isn't here! Obviously I feel bad for saying that as he very well couldn't have been here, had his treatment gone differently. But it's true, and almost like having a third child at times...
The other thing linked with this is that his tolerance levels are so low. He gets snappy with shop assistants about things what wouldn't phase me, with cold caller people who phone, it makes me cringe sometimes. Whereas people who know him know to make allowances, others don't and it's quite embarrassing. Again, I can see why. He's tired, he's had so much to cope with, little things are a struggle and so perhaps minor irritations are magnified. BUT but but... there's no point fighting so hard to get well to find that you've alienated those around you. So tough!
Sorry to be a moaning Minnie. Everyone on here is so amazing. I love the Bob Marley quote. I might say that to the next idiot who tells me they don't know how I've got through it or can't imagine how hard it's been!Â
Yes I totally understand mine had prostate cancer and then lung and brain & he can be so lovely but I’ve had ‘This is my cancer not yours! ‘ ..’Oh yes because you do soo much ! ‘I can do this on my own I’d be fine ‘ all these and taunts so hurtful and cutting him but hopefully he doesn’t mean it and I know he appreciates me . Well done all of you it’s awful isn’t it and nobody understands...but we all do with each other . Xxx
