Have you felt isolated or lonely?

I went from meeting one hundred plus new people each day at work, maybe meeting friends afterwards, shopping at lunchtime and just generally being amongst bustle to a void. Once I started chemo and radiotherapy, I felt so ill that I couldn't even get to the hospital by public transport, so my world shrank to two taxi drivers (which was sometimes a rather negative experience!), fellow patients in the waitingroom, and the radiotherapy team for the day. Then I was back home and in bed for about 6-8 hours alone until my partner came home from work. I had no laptop then, either. All my friends were at work, and I don't have family nearby. I felt intensely lonely. However - looking on the bright side - it was the one thing that made up for having to have the chemo once a week as I would sit amongst other people for the whole day, and got to know one or two people to actually talk to meaningfully.

I saw a notice about a support group for my type of cancer, but when I asked, it had changed location, and I only went once as it meant travelling all the way back to the hospital in the evening. The session I attended, we didn't get a chance to talk to each other at all as it was a guest speaker. I didn't go again as money was very tight.

Getting my laptop at the beginning of March, and then miraculously this site being the second one I looked at, has made a HUGE difference! I have been lucky enough to make some amazing friends - and they are friends who know what you are going through and understand good and bad days. I have attended two of the get-togethers (the second one because Pusspins collected me in their vintage VW camper van!), and have also met up with several friends individually - had a fab day out shearing the sheep (teehee) with the original Alison, and also had Marsha call in to have a meal with us. I can honestly say that I NEVER feel lonely or isolated now: my only problem is finding the time to keep in touch with all these wonderful people! xxxx Penny

Isolation and lonelieness has been a big part of my experience since diagnosis. I think now that I was probably isolated and lonely before but didn't recognise it as I was tied up in work etc. I have a much younger partner and we moved together from the Midlands up north with neither of us knowing anyone here. I think I'm out of the routine of making new friends and somewhat de-skilled!! I am having chemo at the moment and spending lots of time alone.
Eva

The cancer diagnosis also creates some isolation I think. People don't know what to say to you. Certainly I was initially completely wrapped up in what was/is happening to me. I became conscious of how hard it must be for others listening to all that talk about cancer, diagnosis, treatment, prognosis etc etc. I then found that there is no-one really that I can talk to easily about it. I went to the hospice drop-in but there didn't seem to be any opportunity to talk in any depth. Pretty much like any coffee morning.

Like Penny, after spending my time surrounded by people at work, I found myself completely on my own when I became ill. I was widowed 5 years ago, and as I commute to London to work, I don't have friends where I live. Added to that, my closest family is my cousin, who lives over 80 miles from me. Having said that, when I knew that I would be off work for some months, I really expected to be alone most of the time and wondered how I was going to cope by myself. I have been amazed and humbled by the kindness and love I've been shown. My two bosses and several of my friends and work colleagues have made the 90 mile round trip to see me at weekends and there are very few days when I don't receive emails or telephone calls. And of course, What Now. I couldn't have coped without the support from my new friends and family on the site. The amazing thing is to be able to talk to people who actually understand what cancer is, and how it can make you feel, both physically and emotionally. Sometimes I find myself categorising people into "Has cancer" and "doesn't have cancer" groups. And the second category just doesn't understand how the disease can take over your life. This in itself increases the feelings of isolation. The constant highs and lows, the effort to try to stay cheerful and "positive" (horrible word). The feeling that people look at you and see the disease not the person. However, with What Now, we're all in it together. One thing in particular - with What Now, it doesn't matter what time of the day or night, someone will always respond. For example, I had a nasty fall late one evening a couple of weeks ago; I was alone in the house, weepy and shaky - it was too late to ring anyone, so I posted a blog and had so many responses and virtual hugs I felt better straight away. As Penny said, I no longer feel lonely or isolated, and I know that I have made lifelong friends through What Now.

Eva, I hope that you too will soon feel more included within all of us here. I'm going to look at your profile now and send you a message (blimey, you'll be longing for the days of peace and quiet LOL).

I would just say to anyone who has come on and not yet posted anything on the forum or blogs that it is a really good step, as you will meet other people in a similar position, know how you are feeling and what you are going through. There are so many of us now that just posting on a profile can slip by unread.

Kate and Steffy have of course made excellent points, and Steffy is right that many people almost have a superstition that cancer is infectious and even speaking its name is going to invoke it. I'm shocked at people reacting as they did about your daughter though.

Lots of love xxxx Penny

Hi Eva
Me too! I live in a place called Eskdalemuir (Nearest Town Lockerbie). It is an isolated farmhouse. I have lived here for nine years. My husband has lived here for 28 years and has an established circle of friends. Which I have found difficult to break into! I used to work too as a nurse. Now since diagnosis, apart from treatment days, I spend my days at home with my partner he tries to busy himself which is good! I too spend alot of time alone. My family are 200 miles away down in Liverpool/Manchester.
I feel that the 'friends' just don't know what to say to me if I see them at all. Which is human nature I suppose. They have been so kind in that they have sent cards and small gifts which has been lovely. Plus my immune system has been pretty low so I have had to isolate myself!! a catch 22 eh?
On the positive side! I am now having a break from chemo. and will be able to get out and about a bit more (Hopefully!) although the side effects of chemo have been yucky! I am still recovering! I had a second blood transfusion yesterday hopefully that will give me a lot more energy!
Today I feel I have been at my lowest, near to tears! but now I have read your blog and others I am not so low anymore.
It is good to be in touch with like minded people isn't.
Big hug from me and take care
Love Sandy

I had a sudden arrrrrgh feeling at work the other day and went on the chat room - on there Jools and a few others made me feel better just because they were there - how wonderful is that?
Or you could read all the discussions and sometimes argumentative stuff on laetrile B17; it's quite entertaining if you have a few hours to spare! Currently on the anal cancer forum for some reason.
Also guess what - I know where Eskdalemuir is, as my husband's family are from Dumfries and Lockerbie, ah the gentle rolling hills and beautiful Rockliffe with it's shells and sculptures...
So you aint alone, fabulous people on here will help you when you need them too.
Sending a hug back to you all,

I've been in a 'Catch 22' situation really. I found the best way to deal with my feelings of isolation and loneliness was to keep busy but then my medication seems to have slowed me down terribly and I feel limited to doing jobs around the flat in short bursts before i need a rest. As you may have read in my profile I have recently moved into a new flat and it is in an area that is some way from where I used to live and work. So, that in itself is a little stressful. I miss my old job and work colleagues desperately. I felt I was achieving something worthwhile when i was employed but now I have all this time on my hands I suddenly feel a waste of space. I get to a Christian fellowship on Sunday evenings but can't afford the travel every week. It's about 20 miles away. Gosh, am I beginning to sound like an owd codger as well as moving around like one! I guess the answer must be to make new friends. the ones I had in the area i moved from are really nice people but you know, isn't it strange how people react when you mention the big 'C' word. For many it is like approaching someone who has just suffered a bereavement and they don't quite know how or even if they should raise the subject. They don't realise how important it is for them to simply talk to you as a normal person and one who is not about to keel over in front of them or pass on their illness like some dreaded plague. I'm thinking of creating and printing some contact cards to remind people how much I value their friendship and that rather than be left engrossed in my own circumstances I am available should they ever need a listening ear or even just a chat, without the melodramatics! As a Christian i guess I should never feel completely alone knowing God is with me all the time. However, it is nice to have a physical being at the end of the phone to share how you feel. On my contact cards I think I may put in big words across the top 'I am still alive!'

Hello Ruth, I have just joined the site this evening. I lost my husband 10 weeks ago to lung cancer and bowel cancer he was like you back and forth to the hospital every time he had tests it would be more bad news. I can not myself even try to imagine what you as the person with these things going on in your life must feel like, but I know what it was like when my husband Frank was going through the same. We always tried to talk about the cancer and never keep it hidden, all the children knew from the start as we wanted to be able to deal with it as a family, all the children and their ages are near to your son's their ages are 36, 32,31,29,and 29, This was our second marriage Frank has two daughters the one who is 36 and 29 and I had three children a son of 32 and two daughters 31 and 29 we were all open and honest with them and encouraged them to ask questions if they felt they could, It would be a great help to your son if he could speak to you about it as he will be aching for the information if he does not know it, he is probably afraid he may upset you by asking but knowing how all the family asked questions it has really helped them know as they do not have to say I wish I had said that or asked this, we often sit and talk about Frank and get photo's out, we all have a good cry and then laughter at knowing what a wonderful person he was.

My husband never complained and I asked him why he did not feel cross or angry and was just accepting of his condition, he said there is no point in saying why me as it has to happen to someone and there family so why should it not be me. We often cried together, I am sure he must have cried alone as well the only way to cope is I think to let it out you have every reason to cry life is unfair and crying does help.

I hope you manage to find that inner strength to just say ohh to hell with it today I feel down and I will have a good cry and hopefully your son and husband can have that cry with you, I know we did a lot and I am still doing so.

You are stronger then you think and I truely hope you can find that within you take care and good luck with everything

Jayne

Hello to everyone,
I too have gone from being surrounded by people at work to the isolation of my four walls, what a shock! They say that the people you think will support you often turn away, and those you thought wouldnt give a toss actually come and put their arm around you, oh how true I have found this to be.
Cancer was NEVER going to happen to me after all, but I sure found out that it has a mind of its own, is not predjudice, racist or fussy who it strikes. Having been diagnosed in June it is still the biggest shock ever, and I know you all know that feeling. I am coming to the end of four months of chemo and am having a Mastectomy after Christmas. I find it difficult to talk to people though. I find that I am the one having to support my friends and family by telling them that everything will be okay, when actually, I could do with having a good scream and someone putting their arm around me for a change. Has anyone else experienced this? I also find that people say, "come round" "pop in", when actually I can barely drag myself off the sofa to put the kettle on. AAARRRGGGGHH
Reading all of your posts has made me realise, that actually there are a lot of us in the same boat, and if I feel Isolated its because maybe I have isolated myself. Many times have I got ready for a trip to the shops, etc, etc and actually not had the courage to exit the door. I have to get a grip I keep telling myself. The difficulty is not having anyone around me to bounce off. ~The trouble is I am 51 years young and have been single for 6 years, yes I have had relationships, which have suited me, but I had never intended to spend the rest of my life alone, how on earth can I contemlate a relationship now? (Gosh! I didnt ever think I would open up that part of my heart). Dont frown on me people, like all of you, I am scared, very scared, and now Ive upset myself. I have too much to offer to be stuck on my own, in these four f...... walls with this f...... awful disease THAT SHOULD NEVER HAVE HAPPENED!!!!!!
Yes thats me SCREAMING ??????????????
Christie