I have needs

You are not the only one that feels like that.   I can’t add anything as I’m really struggling myself right now.   I just know that it’s important to feel you are not alone xx 

Beautifully and simply said. Thank you for not making me feel like a monster x 

Hi Kat55. I came in here today because Im struggling too! So I absolutely relate to what youre saying. I feel that when I think I have issues they are way more downgraded than my husbands cancer to deal with so I say I need to grow a pair and crack on! (Relapsed Hodgkins and now were on chemo type 3 before stem  cell). 

But the reality is im neglecting myself big time. Mentally the past 5 years have been awful and im Shattered!

Hang in there. Sending you a fellow carers hug xxx

Hi

You are not alone and i am struggling too. Husband is in hospice for pain maagement etc and no treatment to be available. We hope to get him home but i don't feel ready for that either. He has unidentified primary with secondary in spine ribs sternum liver lymph glands in abdomen and chest. Cos of liver and lymph he has severe lymphodema in legs tummy and groin (swollen and weeping) and no-on seems to have an answer how to make him more comfortable so how can I at home?? It's so hard to keep positive and it's also impossible so don't try. Take each day( hour ) as it comes and at the end of each day be pleased you made it. This is an horrifc journey we find ourselves in with physical and emotional outcomes no-one can ever explain. We're all here for you x

Yes in the beginning everyone told me “do take care of yourself - the patient gets lot of care and support but no one takes care of you”. I try to take care of myself mentally and physically so I stay well enough to care for my husband.  But no he cannot offer that care.  He is bitter and often expresses that bitterness - he cannot see anything but his own sufferings and worries and the one time when we had a particularly bad week (not cancer related) and I said I was struggling, he said “ oh so it’s all about you then!” Which was a bizarre outburst but I understand it.  When I went into the hospital myself last year I was about to go under anaesthesia and i was nervous and worried.  The nurse was brilliant and just held my hand and put his other hand on my forehead and I just felt so taken care of - our NHS nurses are brilliant aren’t they? - and I realised how very long I had gone without feeling a kind touch. I do not have any good advice though - I do not think my husband will be able to show kindness or care as he is entirely wrapped up in his anger and fear at this terrible disease.  And really the most I can hope for right now is he doesn’t get angry at me when I am caring for him.  Luckily I do have good and supportive friends and family.

Hi there- I am really replying to all of you here. I have just read the entire thread and everyone of you have so much I agree with (if not all). 

My husband is off to hospice for pain management tomorrow morning. I am driving him. I was just sitting having my dinner (alone in the living room) while he was upstairs. Last week he'd asked to have early meals so he wouldn't get abdo pain. So I do that and now he says it's too early and he doesn't want to eat. He wants to have his bowels open....so when I point to the laxido I'd given him that he hasn't had, he says, "Okay boss". And then while having my supper I can hear him moaning in pain. I know I care and do everything in my power to help and fetch and carry- but why do I feel like HOLY SH^*&( I JUST WANT TO HAVE MY DINNER WITHOUT THINKING ABOUT YOU. Then comes the guilt and remorse for being unkind cause no matter what we feel- they have it worse. 

Fuck cancer. 

This morning when we found out about the hospice bed (that he has agreed to I hasten to add) he acted like it was all my idea and he lashed out. Saying I only care about money, (I've been off work since the end of November to look after him) but he said I'm always out.......it was hurtful. I have completely swapped my life for his. Truly. 

I always joke with friends that if things were the other way around he'd open the door and throw a piece of toast at my head once and awhile. 

I also know it's the disease talking and not him. The pain has been relentless for about a year and a half now and I cannot imagine his misery. But it would also be nice to be asked how I am once and awhile.......by him. 

Thanks for listening,

T.

T

I like to think if someone was caring for me that I would be gracious enough to say how grateful I am amongst the moments of pain. We take it out on those closest. A sense of humour is sometimes required as is immense tollerance! It's the cancer that we hate but sometimes.... Well it does for me, it feels like the person we hate and want to ragev at. It certainly pulls us emotionally in so many directions it's hard to make sense.

Kat

I was looking on here after sharing many of those thoughts. I miss feeling loved and supported, cos my love is focused understandably on himself right now. Everything revolves around prioritising his needs and wishes - there is no longer any mutual support. I am just his caree and housekeeper now, not his wife. Everyone asks me how he is. No-one asks how I'm feeling - and I feel very embarrassed and selfish feeling sorry for myself. 

And on the very rare occasions when someone does kindly ask how you are, the gratitude at being considered is so overwhelming that you just want to cry. We've all been there I'm sure. I certainly have. 

So true