Help

Thank you nanny J,  our district nurses are amazing as is the palliative care nurse. I try not to rely on them too much because I know they're so busy and since my husband seems to have picked up a bit lately I've asked them just to give us a quick phone call every couple of weeks. I'm really struggling with the not knowing, it sounds strange but I think it's because we've had so many ups and downs where we've been told there's nothing they can do then a new treatment would be suggested or trailed but this time it's so final. When he was really ill over the last few months I was on edge all the time wondering would today be the day he passes? So many days coming home from work wondering what would I find when I get home, its like I'd gone into auto pilot to prepare myself for the worst and now he's picked up in himself I feel guilty I think or ashamed for thinking the worst, it was also really  embarrassing explaining to my employer how ill he was and that I might need some time off to then a few weeks later  having to say he's fine now, back to his normal self??  Having know one to talk to hasn't helped, I've bottled up so many feelings, thoughts and emotions that I don't know what's normal any more. I did try talking to the palliative care nurse but to be honest she wasn't that helpful. Xx

Daydream believer I can relate to all you are saying and dealing with this so young is so unfair. 
Don’t think anyone understands how lonely it is even though I am lucky my children are all grown up and have supported me. However they have young families of their own and I want their lives to carry on as normal as possible so hide a lot from them. My husband has had 4 lots of surgery chemo and radiation all this year and now he has recurrence and he has spiralled into depression. His family are exactly the same full of offers but never actually appearing. You just want them to come visit and take the pressure of you for an hour or so. I have only just joined this group but It’s so good to know you are not alone and can vent off without being judged. Take care sweetheart x

Thanks LouLou,  wow that's a lot to go through in 1 year-we went through 2 rounds of chemo, a trail chemo and a stem cell transplant in 2015, my children were only 9 and 3 at the time - it was bloody hard going. I have to try and keep things normal and hide a lot of what I'm going through not just for my girls but my parents as well, my mum worries so much and it keep her up at night so I try and protect her from it all. Since I last posted I've found something quite worrying out, I ran I to my sister in law the other day and we had a good catch up. She was surprised to here my husband had turned a corner and was doing really well at the moment. She asked if they could come over and see him, she seemed a bit surprised when I said of course she could, she then told me that a few weeks ago by brother in law had come round to see my husband and my husband had told him that he didn't want him or his family coming round again seeing him like that and that my BIL was really upset that would be last time he'd see him alive!! I was mortified!!!! I just wanted the ground to swallow me up! Which makes me think he's going through some sort of depression, he's not a talker so won't tell me how he's feeling which makes it harder but I've noticed he's changed alot over the last 6 months, we argue a lot, I feel like he picks on me at times, always having little digs at me about silly things, belittling me and making me feel guilty about things when I'm doing my absolute best. I'm trying to supportive and understand he must be in bits inside about his prognosis but it's waring me down now, I can't talk to him about it because he just dismisses what I'm saying as rubbish and it's all in my head and we end up arguing again so I just keep quiet. Can I ask how do you cope with your husband's depression? Does it affect your relationship? When my husbands having a bad day and he starts I think why am I bothering??  Xx

Hey 

I can relate to everything 

I can relate to everything your saying and feeling, as I am feeling the same, just feel so unappreciated and I just wish I could shut the world out sometimes x

Daydream Believer

sounds very familiar

Before my husband went into depression he was the same. He went from snapping at me for anything and everything to not wanting anyone to come and see him like this to totally withdrawing into himself. This was the worst stage , wouldn’t speak to me, stopped eating, slept 20 hours a day.I cried more in the last few weeks than in the 40 years we have been married. This all come to an head earlier this week when he finally broke down and admitted he was just really scared and believed the cancer was just everywhere. Unfortunately our heavily pregnant daughter was round at our house and witnessed this. She was distraught. One of our sons came round and after giving him a stern ( but not nasty )talking to he seems to have come out of it. I’m still on eggshells but he is much more like his old self. Is there anyone your husband will actually listen to who can explain how his behaviour ( not the cancer)is impacting on you and his family. 
As for his family tell them to just turn up whenever they want because you need their support even if he doesn’t and I’m sure your girls will be pleased to see them too.

take care sweetheart x

Leab79

I think we can all relate to each other . Just vent off on here there is always someone who will listen and can understand what you are feeling x

Thank you Lou lou 41, I shouted at my husband the night before last and I've felt dreadful ever since, he needs alot from me as well as me doing everything in the home now as I feel like I'm juggling everything and living on the edge, he also sleeps most of the day, and I feel so alone at times x

Lean 79

Yes I have done the same. Got annoyed with him  and then eaten myself up with guilt afterwards. Don’t beat yourself up we are human not machines and we are allowed a little well deserved meltdown now and then.

you are not alone there is so many people here who will listen to and support you.

also do you have a McMillan nurse. They are there for you as well as for your husband. I have found ours a  fantastic support. x

I can totally relate to all of you! You feel so alone and isolated. You crave normality, have anticipatory grief, dread what tomorrow or tonight may bring.

you look around and feel that everyone is having a normal life except you. 
I have lost my myself and my identity since our world fell apart in April 22. It has been a rollercoaster of emotions and I to want to shut the world away most days. 
I do everything I can for my husband to the extent that I feel physically and mentally drained. I ask for no thanks no gratitude but just to be appreciated slightly instead of being made to feel thead one and him becoming hostile towards me. He did start on antidepressants which did help for a while but they then seemed to totally switch off his feelings completely and give him other side effes. I feel guilty for even venting to you all but as hard as our situation is, it is nice to not feel alone in this horrific journey. Love to you all and please take care. Would love to speak to any of  you if you’d like to message me