Lost and so alone.

Hi SpiritintheSky 

Welcome to our community, I hope you find having somewhere to talk helpful.

Sometimes people with cancer can be worried that people will treat them poorly and so not want to reveal it but often that leaves their loved ones in a really difficult situation to get the support we need. You are of course welcome to ring the helpline here - 0808 808 0000 - it is open from 8am to 8pm 7 days a week and I have certainly cried at them in the past.

<<hugs>>

Steve

Hi SpiritintheSky,

Reading this is also my life, you have put it as it is.

My hubby was given the same diagnosis but after a year was told it wasn't but was multiple myeloma.

Not sure whats worse if i'm honest, it doesn't change how they are/act.

My hubby is  just sitting in a chair or laying in bed most days.

Like your hubby he doesn't let others know what is really going on.

I work so have some time away but then still have to do everything.  Shopping, sorting out all the things that need doing, putting bins out, cooking, cleaning, gardening and all I want to do is escape.

You are not alone, not sure what part of the country you are in but where we live there is nothing local to do, no buses etc.

Sending hugs and hoping you find a friend you can let know how you are feeling.

Hi there, you are not selfish or unkind. You are suffering. The role of carer is vastly under appreciated.You are the one taking him to appointments, administering meds, seeing him suffer, trying to encourage. It is exhausting. No time to sleep properly, to have time for yourself, to be your own person. My husband passed on the 4th August from kidney cancer. When I was in the caring stage, I said, “I will not lose myself’. This still stands, eight months later. Sending you hugs. Kate. Xxx

• Just to say thankyou for understanding and that it helps to know someone gets it. This cancer feels like a dividing wall between us; neither of us knows how the other feels, only that we are both suffering and scared. Thanks again for giving me somewhere to be honest, and for the support. 

Yes, I do completely understand. That is why this forum is so important. You can rant all you like, you are entitled to feel angry, frustrated, lonely, scared. Other people don’t really get it. How can they ? They are only seeing a small part of your joint suffering. Is there any way you can get out for a bit ? Shops, petrol, pub. I used to appreciate even a half hour break to walk the dog or a quick glass of wine down our local. Anything to break up the intensity. You are not alone. Sending you hugs, Kate. Xxx

Thankyou so much. xx

Oh gosh, you have just described my life. I understand from our experience just how you feel. I recognise the feelings of helplessness, guilt resentment etc. I understand. 

like you we are together 24/7. It’s very difficult to get away even for half an hour. My husband is well on treatment at the moment, but he is becoming very dependent on me and my company. If I need/want to go out he is there with me, to the shops, appts anywhere really. Perfectly capable of going by myself, he’ll wantgto take me, drop me off so I don’t need to worry about parking, pick me up and take me home. That is if he hasn’t just come with me. 
The biggest challenge for me is that hecwont tell me how he feels, so I’m constantly watching, evaluating him. He’ll say he’s fine, but then behave completely differently and on questioning, I find out he’s extra tired or not feeling well or pretty fed up. 
Don’t get me wrong, it not all like this, but life is very different and very intense. 
What I e learned is that I can’t control his condition or his behaviour, but I can try to control my own life. I’m trying b hard to make time for myself - even if it’s only half a hour getting my nails done. Friends are really great now they understand, they come and pick me up to go for a coffee or whatever so he doesn’t have to take me or wait for me. 
Like you if I say anything he denies it andvthen sees no reason to talk about it further. 
I totally understand, I do. 

• It's so hard isn't it? Your relationship changes totally. I used to feel loved and supported and taken care of; now I'm doing all the caring and it sometimes feels that nobody is caring for me. I do get a little break when I walk the dog, but every day seems to be one chore after another and I'm just so tired. But I know we have to make the best of it, take pleasure in small things and hope for the best. Thankyou for taking the time to respond to my post, I do feel less alone knowing there are others who understand. Sending you a big hug and much love xx