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Hi MarvelLover,

You have been through a real roller coaster and it is no wonder  your emotions are all over the place.

I know it is almost impossible but  try to remember that it is hard for his family too.  They may well be useless but if their intentions are good, try to show them what they are doing wrong  so that they do it right. This is an immense burden to carry alone so if they can help, let them. Crucially, does your partner want them involved? The answer to that gives you your starting  point for how to move forward from here.

Do the things that MUST be done and leave the rest. You need to find some quality in the time you spend together.

There's no right or wrong way to feel, but please try to take care of you, too. 

This path we're  on is not an easy one and some days will be harder than others, which is why it is fab to have this forum.

Sending hugs for the difficult days and wishing you peace and strength  along the way. xx

Totally get you I'm in the same situation,  I feel alone , and I get you being resentful I feel the same resentful we can't do anything together , greving over our past, and that things will never be the same again, we will get through this , message me if you need to talk 

Oh, how hard for you. But you're definitely not the only one! I feel resentful, and guilty for feeling resentful, every day. I can understand your partner feeling too tired/ill to be gracious, but it must feel horrible to be constantly caring (hard work!) with no thanks, and nobody recognising your needs.

Obviously every relationship's different, but it might be worth trying to have an honest discussion with him about both of you trying to support each other. Or can a nurse help with those conversations?

Also, I'd encourage you to find 'normal' things to do for you, which take you away from the situation, and insist on sticking to them, even if it's just a walk round the park or meeting up with a friend for a coffee.  I know it's easy to say and not easy to do - I don't always feel like going out of the house for an hour when the time comes - but it'll keep you a bit more sane and make you a better carer for him.  Sending you love.

Hi,  as I've read this, I've thought this could have been written by me!! This is exactly how the last 6 months have been for me and its damn hard. My husband's been fighting a rare lymphoma for the last 12 years on and off, we've been through every treatment available seen every Dr and specialist and each time it's come back I've just gone into autopilot and we've always coped with whatever has been thrown at us. Even in March when he was placed on palliative care I still went onto auto pilot and we carried on with life as normally as we could. That changed 6 months ago when his legs started swelling then his feet and his neck. He was put on steroids and my god was that few months the most challenging of my life, he was a completely different person!! Demanding, angry, nasty I'd go as far as to say hostile at times, the amount of times he'd reduce me and the kids to tears was unbelievable, I no it wasnt really him it was the affects of the steroids but it was soul destroying, I had no one to turn to for support and felt so lonely , I spoke to his gp and got him something to level him off and it did help but by then I was already feeling low and like all my efforts were just not good enough. He went further down hill quiet quickly, sleeping in a chair in the kitchen, sleeping most of the time actually, hardly eating or drinking needing me to help him shower and dress and just looking like a shadow of himself. The summer holidays for the kids weren't the best, I wanted to do normal things like picnics at the beach or daysbout shopping but I just couldn't leave him  I felt like I would have been abandoning him, which made me quite resentful. That's when the guilt hit me, my amazing husband was really going down the palliative care road and I was going to lose him, I felt guilty for all those weeks of feeling angry and frustrated at him. I think that's when I must have started some sort of grieving process, I hadn't realised it until I found this forum and started reading other people's experiences. A few weeks ago he picked up, the swelling went down, and he bounced back to being almost his normal self, he could sleep in our bed again! This is where my feelings went hay wire, and I couldn't understand why I was feeling so resentful, how dare he after months of sleeping in the kitchen decide he wants to sleep on our bed and keep me awake at night with his snoring and coughing!! I was like wow that's not normal thinking, I should be pleased he was feeling better and able to be a normal couple again but I couldn't shake these feelings, I kept thinking has he had me on for months for a laugh, how can he suddenly over night come back from near death to being normal again, I felt like the worst wife in the world at this point. Until I found this place and realised it was normal, I was going through the grieving process before he'd even gone!! And it was an actual thing not some excuse or random idea it's an actual thing. Ive started to understand it better after reading other people's story's and research online, I'm still struggling with these feelings because now I'm anxiously waiting for something to happen and he'll go back down hill again. And I feel guilty for that, because it like mine and the kids  lives have been put on hold everything is focused on him and I miss our familys days and date nights and how everything was before and again I'm grieving that normality we had  It's like being trapped with no way out, and I've come to realise it's because each time his gone through treatment there was always an end date we would focus on reaching and once that date was reached life would go back to normal until the next relapse. But this time there is no end date as he didn't want to know time scales which I understand, I don't think I would in his position but in my position I need to prepare my kids, I need to plan things but he doesn't want those conversations with me. So for now it's like living in limbo, how have I coped??? I don't no to be honest, how will I cope going forward??? No idea, like you he has family but they stay away now because he's  fallen out with them over the summer, I have no friends really unfortunately over the years going through our journey they disappeared,  my parents try to help but I find i end up supporting my mum , she's overly emotional. So for now, I'll take each day as it comes, I'm going to try not to think to far ahead. Sending hugs to you and I'm here if you need to talk. X

Thank you for taking the time to write that. I can’t even imagine how you have been through 12 years of it. Our journey will be one year in January and then whatever happens after that. 

stay strong, it’s so easy to say and I feel like a total fraud offering you that sentiment with you having been through so much. 

x 

It doesn't matter how long the journey has been, it could be 6 months or in our case 12 years it takes its toll on us all the same. I'm here any time you need to talk, xx

I can totally relate to your last paragraph. I feel exactly the same. It’s a lonely life being a carer instead of a wife

It is so lonely, I don't think people on the outside realise the impact going through this has on your relationship, there have been so many times where I've felt like the hired help.  So many times I've thought this isn't a marriage any more, there's no affection, there's no excitement and that makes me resentful towards the cancer not my husband I know it's not his fault he got dealt a shit hand and I get upset seeing people we know going on holiday, family days out, date nights and I miss the times we were like that,  which seem like such a long time ago now,  I feel like cancer hasn't only taken my husband's life, it's taken mine to, I'm 37  I should be enjoying life, not living under this dark cloud. Every one's says "your so strong" or " I don't know how you do it" but the reality is I have to, it's not a choice. And family well if I had a £1 for every time his family said "we're here if you need anything" or "let us know of we can help" God I feel like saying I shouldn't have to ask for help, take 5 minutes to come and see him, spend some time with him but no they stay away because he's hard to deal with when he's having a bad day. They don't even phone him or message him anymore it's so sad.it makes me think how alone I'm going to me when he's gone. 

Marvell Lover

Been there and done that.  So my heart goes out to you

Feeling resentful is normal, anger, fear disbelief etc these are all normal feelings.

My partner John died on 17th July after being told that nothing more could be done.  I am so angry with the Oncologist as she told us that they would cure John.  Yet 9 months after diagnosis we were told nothing but palliative Chemo  could be given.  Unfortunately for John he only had 2 rounds of that and then they decided that wasn't working.  

I feel that your partner is acting the way he does because of fear, fear of leaving you alone, fear of the disease and the outcome etc.

Please contact your District Nurses, mine were our saviours.  They came round whenever we wanted them to and dealt with so much for me.  They took time out to talk to me to see how I was coping, they referred me to the Palliative Care Team (the hospital were useless), they talked to us about what we wanted and what we didn't want.    So please, please contact them, they really are angels and were my lifeline.

Please take care of yourself, this is a hard road to walk and you need support xxxxxx

Daydreambeliever.

Those £1 would be great wouldn't they, you would be able to afford someone to come in and clean the house for one thing which would give you a bit of time.

None of my partners family came to see him at home until the final 2 weeks, when he was bedridden, they never showed up when he was well, so I wasn't overly surprised that it took so long when it was getting closer to the end of his life.   

Yes you will feel alone when he's gone, you will feel so many emotions, but remember the better times, please.  Also please contact your District Nursing Team,  ours were wonderful .   Hugs to you xxx