Have you felt isolated or lonely?

Yes, I recognise the situation where we are the ones doing the comforting, and definitely having to play things down and hide our fear to protect other people. It's difficult as you say when you don't have anyone to "bounce" your thoughts off. At least on here you can scream and we'll be listening - possibly joining in - but definitely listening.

It's sometimes said that keeping a diary helps, as you are working things out as you write them down. I've always written a diary so I don't think I can compare!

Sending you all on here HUGS xxxxx Penny

My husband has cancer and prior to him being diagnosed I worked but now I need to be at home with him as he has started to get quite anxious and agitated when I am not there. At the start everyone was telephoning and calling in, which was lovely but at times a little too much as we were just repeating ourselves as to the situation. What would get my goat was the one's that just came "to see", don't normally see them from one month to another and would come out with "know just how you feel" They hadn't got a clue!!!! Now, 4 months down the line I have 4 close friends who contact me regularly. Family tend not to ring too often (there are so many of them) as I update mum and she spreads the word - now she has been diagnosed with bl***y cancer! I do find support from the online chats and forums but would so love to meet to sit and chat with "real life" people who are carers like myself. I live in Sandhurst, Berkshire. Anyone nearby?

((((((((HUGS)))))))

Elaine xx

Hi Ruth,

Thank you for your reply I have been away for a few days and have just come back on line and checking to see how you are.

I am so sorry that your husband still finds it hard to talk about things with you, talking helps heal and if your husband could open up he would find it easy once there, however, he may be afraid and he does not want to talk about it because taling about it it going to make it real for him, this is why I think he can not open up and he would rather not know the details, this way he is kept in the dark and does not have to face it.

This unfortunatly is not helping you, he is thankfully talking to someone and he has hit the nail on the head he is afraid, he is afraid of the condition he is afraid of losing you. I know as I was so afraid but I still had to talk with frank about it, we did not always talk about the illness but about things we were going to do when he got better, we both knoew this was not going to be the case but to believe in something else instead of illness also helps..

Maybe writing your hubby a letter may help telling him all the things you want to tell him, you could put it somewhere only he will find it and maybe he will read it, only trying could help

Maybe talking about other things with him would help put the c word away and concentrate on the love word just enjoy each others company, I know it may sound easier said than done but Frank and I would talk about films holidays going out, this was limited the going out bit but we tried to watch funny films and bring happiness in to what little time we had left or even before we knew how much time we had.

I know Frank enjoyed his garden and our daughter would take him to the garden centre when he was having good days, we would sit outside and take in all we could..

I have had a few bad days and i ride along with them, I will have bad days and I also have good days and I don't feel guilty for having them, I know Frank is with me somewhere watching over me and that helps, and also talking about him with family helps he will never be forgotten.

I will always have time to chat with you Ruth and I hope your hubby can some day be able to talk with you, if not you can always talk to me and others on the site we are here to help each other. I hope you get plenty of people that contact you and don't forget the other forums you will find lots of interesting things on the site.

U take care Ruth and thinking of you

Jayne xxxx

When I was diagnosed I found that I just wanted to go into hiding. In my job I meet people all the time on a daily basis and complimented with my love of starbucks and people watching with a cup of coffee. However I found myself backing into a very solitary life. The choice was made by myself as when I was diagnosed I was given details of groups I could join to talk about everything but what I wanted at the time was to be left alone. It is something that I do regret now, I wish I was less cavalier in my way of thinking which was that if I spoke to people, I would be burdening them with something that they neither could control or fix so it was best to keep it to myself!
Into my third week of thearpy I had neither the energy or the confidence in leaving my home or visiting my family. I did not want people coming to see me as I felt half the person I was before. I had always been strong and "there" for others but I found myself doing the total opposite of what I would advise others....

Now I am much better but do very much feel alone when I think of my past illness or when I slightly freak out if I think a node is swollen or if some of the symptoms return. I guess in essence, I now hold back on giving 100% of myself because I am so used to not talking about things or my health or just diverting the topic, I don't want pity, sympathy or a fuss being made. I dealt with my illness on my own with a select few friends, whom I managed to push away, and I find that my cancer is a part of my life that sits upon my shoulders alone.

I can relate to so many of your posts. For me, the isolation is unbearable, and online communities, forums, chat-rooms etc don't replace that ancient need all humans have for real live gatherings. I need to see and hear people!! We are multi-sensory beings, and we need the input of sound, sight, touch and so on

. Everything seems to be going silent - texts versus spoken calls, swipe- through check outs so you don't engage verbally with another human being;..a lap top per person - it's as if society is pushing us into this silent world, where people may be physically standing next to each other, but actually they are frantically texting someone who is perhaps hundreds of miles away. Then to compensate, we have emoticons, cartoon images that represent a hug!

People are losing their social skills. I have heard of online groups meeting up in real life and being completely shaken and disappointed as the reality doesn't meet the expectation!
Where I live, there is only one cancer group for the entire county. They meet twice a month, and it seems to consist of only 2 or 3 people!! Everything else, from the hospitals, the Macmillan site itself, all the help-lines, they all ultimately re-direct me back to the computer. I don't want to spend my days staring at a screen. It's not a substitute.
Sally

Hi Sally

I agree with so may of your comments but would add...

Ref. "People are losing their social skills. I have heard of online groups meeting up in real life and being completely shaken and disappointed as the reality doesn't meet the expectation!"

If you read some of the blogs and comments on this forum - you will see that some of us from all parts of the U.K. have met up. (inc. 1 from Cornwall and 2 from Scotland)
Events:
'The Buxton Rave' - BBQ. The 'Leicester Fiesta'. Most recently The 'Wirral Wobble'. Not everyone can manage every event but those that can meet up - not forgetting those that cannot - for whatever reason. The meet-ups have been accompanied by good food and drink! We've shared our thoughts, highs and lows - through words, poetry and photos!

It has been good to put voices to faces! The fellowship & humour has been great! People in the same boat - as cancer patients or supporters.

The Christmas event is in Manchester on 6th December at the Irish World Heritage Centre. Folks have booked into travel lodge or B & B etc. for the Sat. night. ( details under Escoffier blog - http://www.whatnow.org.uk/blog/escoffier/details-christmas-party-manchester )


If you can make an event - you will be welcomed with a REAL HUG & A KISS!

God Bless


John

Thanks John,
That was heartening stuff. I guess I'm a bit ''glass-half-empty' at the moment. The problem for so many things is that Cornwall is very much out on a limb. It's a beautiful place, and I love it for many reasons. But I do feel so cut off as well. Recently BA pulled it's regular flight from Newquay to Gatwick, so it's back to driving or the train for hours, and I just feel the lack of local support. I'd love to come to one of your meetings, but at the moment everything is so uncertain. My husband will be having chemo and radiotherapy soon, my friend will be returning to America, and I would be terrified of leaving him on his own.

It's strange, because there surely must be hundreds of people in Cornwall suffering from cancer, and I would have thought there would have been lots of support groups. But as I said - there's only one once a fortnight in Truro (half an hour from where I live) and a breast cancer one in Penzance - 60 miles away, and not the same cancer.....
But I was very touched by your warm words, and if I can make it to one of your meetings I will.
Love,
Sally

Oh...Yes...very...but even this website doesn't really help, only virtually. Physical contact with other patient is quite hard where i live....and I live like this since more than one year now....

David

Hi Sally D and Orionx

I realise the problem of feeling isolated - whether in a rural area or city. A good family, friend or colleague support network is desirable.

From my own experience Sally, 'looking on' at your partner going through it is very difficult. It can get very intense. I needed a short break sometimes - just to unwind and recharge my batteries - even if it was just a couple of pints and a chat in my local pub!

Have you thought about trying to set up a support group in your area? You could post a thread topic about it?

Getting together of forum members is not easy as we are so widespread. So far Buxton, Leicester, Wirral and forthcoming Manchester. I think there is scope for other regional gatherings.

Macmillan might be able to link up local patients informally - for those who wish and consent to do so? Worth discussing?

Yours

John

I don’t know if I am looking for advice or just sounding off.

I am not alone. I have a partner, a wonderful son, a close loving family and good friends that would do anything for me….. except talk to me openly.

God I am lonely. I feel so very isolated and vulnerable right now. This disease that has swept into my life and turned it upside down has shone a harsh light on all my relationships.

I feel I am being brave for everyone else……. nobody wants, or can handle seeing me cry or showing any sign of weakness. I guess that is my own fault for always being the strong one of the family, the oldest daughter and big sister, the organiser, the one everyone turned to when they needed a shoulder to cry on. Now I need a shoulder more than anything…..

My partner insists everything will be just fine, they will fix me up in no time then it will all be back to normal and we can get on with our lives as before. When I tried to explain that being diagnosed with cancer has hit me so hard that I wasn’t sure my life would ever be the same again….. he accused me of lecturing him and told me it wasn’t just about me! I know it is hard for those who love me too and everyone handles these things in different ways but how do I make him understand how scared I am without scaring him?

I’m bottling up so many emotions and tears they feel like a heavy weight on my chest. I know this isn’t good for me....
Sharing emotions on here seems to be the only safe option at the moment.