Lonely

Hi sausage roll, yes me! I think I am a bit older than you but have 4 children and 4 grandchildren. You have really had a huge amount to deal with and it's still ongoing. You are a very special lady. Getting to the point of  loneliness  perhaps with me 9t is isolation. He doesn't want to go anywhere because he feels so unwell, has zero appetite, so no meals out etc. I haven't really had any friends since the children grew up and that small social circle ended, so I cant solely blame the cancer for this.  Cancer is a thief, it robs us of so much more than health. I hope others on this forum have some helpful suggestions as I haven't been much use other than to say I hear you friend x

Hi sausage-roll.

i completely hear what you are saying. It’s my boyfriend that has cancer. We have so much support from our families and closest friends, I can’t fault them. Yet living with cancer makes you feel so isolated from everyone that lives a more ‘normal’ life.  I know they are all here for us but do they really deep down understand what it is like being in this situation. I always put a brave front on, and sometimes I feel like I am the one that holds everything together, having to reassure everyone, answering all their questions and remaining positive. I often feel like I don’t have anything in common with my friends now, this has all changed me so much, and I kind of feel resentful that they can all be happy and get in with their lives then there’s us that are having to put our lives on hold and live this nightmare. Sorry, as you know, you have good and bad days, today’s just one of those low days I think,  I quickly bounce back up, you have to don’t you. Being on this site helps, talking to people that don’t have to pretend that they know what you’re going through, but are really going through it too themselves. 

Move not been much help either haha, but just wanted you to know that this is most likely how a lot of us feel from time to time. 

Take care Lena x

Feeling the loneliness tonight  more. My partner is so tired lately, no appetite and he goes to bed early leaving me here with the TV and internet. I've not made any plans to meet friends because I don't know when his next chemo will be. I'm so grateful he's still here but it is hard being positive all the time. 

Hi Sausage-roll,

I know what you mean about feeling lonely. Although mine comes more from people's understanding of what we are going through (as some other people have said). I get lots of messages from friends and family asking for coffee and catch ups... which is lovely... but at the moment, the last thing I want is to sit in a busy coffee shop and look at people who are able to get on with their lives while mine is stuck in limbo. 

I think this is probably quite a selfish time for a carer (whilst being completely unselfish in the care we give) and I am learning to just say yes or no to things as they come up based on how I feel at the time. 

Hopefully this is a once in a lifetime experience for us all and brighter days will come (days where I can sit in a coffee shop and not feel like I am so separated from the rest of the world!). 

Kelly 

Hi Kelly Sparkles and everyone,

Don't be deceived by what you may see in the coffee shops etc. I can sometimes be found sitting in a busy coffee shop having a catch up with a friend, looking just like anybody else getting on with their life. 

There is nothing about me which tells you that my partner has just come out of hospital after his 7th admission in 16 months. He is currently cancer free, however this is as a result of life-changing surgery which has taken it's toll and he is once again signed off sick from work for 2 weeks. His employers are trying to be understanding, but can only tolerate so much and we don't know how much more they are prepared to put up with. My elderly parents both have dementia and my dad is virtually housebound. They take up a considerable amount of my time and are a huge worry with things only going to get more difficult in future as their rate of decline is increasing quickly.

I feel very lonely sometimes, but none of this is visible to the naked eye and somehow I get myself through each day. I often watch the people around me and wonder what they might be dealing with. They may look fine too, but maybe they aren't - there is no way of knowing, and with 1 in 2 of us getting cancer it does make me think that possibly all is not what it seems

I'm sorry if I've not explained properly, but I hope by sharing my experience it helps you to feel that you are not alone and that there others out there feeling as you do. I have seen a quote which says "always be kind, you never know what someone else is going through." and never has this proven to be more true to me than in the last few months.

Sending you my very best wishes. 

Hi This is me,

That's a perfect way of putting it :) I completely agree actually. I would love to know everyone's story that I pass in the street. I wish people could have it written on their t-shirts... although mine would say 'Multiple cat owner, single, full time carer for both parents...' - not sure many people would want a chat after reading mine!

Kelly 

Hi Kelly sparkles, I would also love to chat with others, those cafes that have a table with a sign on saying happy to chat are such a brilliant idea. Wouldn't it be great if there were more and you felt you could go out, sit at a table with a coffee and hopefully someone else would sit down and you could just talk. In the meantime, talk away, I  find  reading everyone's posts reassuring and comforting, though of course I wish non of us were going through all this. Much love, pam xx

I am currently in A&E waiting for Mum to be admitted on to a ward. I know there isn't much they can do for her now but she always seems a bit better once we are in hospital. Anyway... I was just thinking again (even in A&E!!) how distant I feel from everyone. Silly as it may sound I am sitting with people that have bad wounds or high blood pressure and I am just thinking 'and?? None of you are as bad as us!' I hope I am not becoming too disconnected!

So refreshing to read these accounts of feeling lonely, disconnected and in limbo. Because that’s exactly how I feel, especially the limbo bit, caring for my husband with terminal oesophageal cancer. I’m still working, but from home, which provides a hit of normality but I do feel ‘on hold’ ( and that makes me feel guilty because it’s like I want this to be over, which in a way I do- and that seems so selfish). I try to deal with it by making the most of other human contact - friendly dog walkers, text and WhatsApp family and friends, and ruthlessly take up every offer of help. It’s important to me to try and keep connected outside of home but also, this is actually quite a precious time. I’m only getting one shot at supporting my beloved husband of 32 years as he approaches the end of life and I’ve challenged myself to make it as loving, peaceful and dignified as I possibly can. I’m helped by the most wonderful support from our local hospice at home team, district nurses, a great GP - I still think I’m lucky even despite everything. 

Thank you to everyone who shares in here - I wish you all the very best in your own journey no one wanted to take x