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are you ever lonely?

maglets's picture
maglets
Posts: 2589
Joined: Jun 2006

are you ever lonely locked inside cancer world?
mags

HeartofSoul's picture
HeartofSoul
Posts: 732
Joined: Dec 2009

I dont know anyone with cancer who at one time or another didnt feel lonely and it can happen at time of diagnoses, during treatment and afterwards. It can happen at home, at work, with friends, being around the general public, driving, or lying in bed unable to sleep. It also affects caregivers in many of the same ways.

ron50's picture
ron50
Posts: 1720
Joined: Nov 2001

I was thinking about it last night and finshed up really depressed. When I was dx I had a wife a home full of plants and pets. My boats were parked down the side of the house. Now ,no wife ,no pets ,no real friends. I work alone,I fish alone,I live alone,I am alone. My body has even deserted me. I can no longer feel my legs from the knees down, same in my left hand,my kidneys are down to fifty percent and leaking protein like a sieve. I have osteo and psoriatic arthritis and have to take some crap drugs,arthritis drugs are as bad in their own way as chemo. The one I am on at the moment ,arava, is so invasive that if you are a woman that wants to have a child ,you must go off it for two years. I am turning into a hermit and the only word to describe my life is ALONE. I strongly supect I will die alone and the thing that upsets me most is that it is probably the way I want it. PS I don't want pity or sympathy the one thing I have learned in life is to accept things the way they are,Have a good healthy Christmas Mags...Ron.

Holdtight
Posts: 151
Joined: Aug 2009

Sometimes you're better off alone. My "executive" brother who is an alcoholic through and through calls from Texas to see what my mother wants for Christmas and she isn't sure so I call him the next day to tell him to get her a certificate because she is hard to buy for. The next day he calls my sister and asks her why I said a certificate so I could spend it. They make me out to be a bad guy even with cancer. It doesn' ever end. He is nuts with money. He has been against me for years trying to do what he can to destroy me -I have always tried to be a professional and for some reason can't stay in the same job. I've lived with my mother for the past 18 years and they have been trying to drive me out so I don't have anything. They ignore me talk over me. It's insane. My sister has always been extremely jealous of me and I can't trust her. So I deal with it. I am treated so cold but I have to deal with it because of them not being happy in their lives I'm not to be happy either. They've put me through hell. I'll probably not survive to stay in my mother's house if something happens to her anyway but they are determined to make it unhappy. I hate my life sometimes but I have two beautiful kids who give me hope and I stay strong in prayer with prayer I don't need anybody. Thanks for listening. Hugs.

Holdtight
Posts: 151
Joined: Aug 2009

Don't mind me I just get upset with it all but I'm fine. I let it roll. Thanks.

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

You are not alone! I am sending my big hugs!!!! ROFLMAO!!!

HUgs, Kathi

Lovekitties's picture
Lovekitties
Posts: 3323
Joined: Jan 2010

This is the only place where I can interact about cancer. While my family would listen, they can't understand all that goes with the disease.

My folks are in their mid-80's so don't want to lay any heavy stuff on them. My kids are grown with families and problems of their own, so they don't need my worries on top of that.

I have no significant other. I do have one internet friend who I can share anything with, but even there I hold it back fearing if I get too much into it, it may cost me that friendship. Before cancer I did have several others, but somehow they disappeared after the diagnosis.

I am not a hermit. I lunch out with ladies in the neighborhod. There are several who are alone so we kinda keep tabs on each other. I do some charity work with the local hospital.

But cancer is not a topic of conversation with anyone but you folks. Thank God for you all.

Marie who loves kitties

christinecarl's picture
christinecarl
Posts: 545
Joined: Sep 2009

I live alone and have no family in the city I live in. I have great friends but they are busy with their own life, as they should be. I was thinking about my mom recently, wishing (for many reasons) that she had survived colon cancer, we could have leaned on each other and pull each other through it. She did not have an online community of people to help her like I do and I can't imagine how much harder that must have been for her. A least we have each other :)

TMac52's picture
TMac52
Posts: 358
Joined: Aug 2010

I have people all around me family, friends co-workers. Every one wants to help me and feel sorry for me but none of them know what I feel. None could understand the emotion this C word brings to us. I am lonely within my thoughts. This CSN site has helped me connect with some people who can identify with the feelings. The only other people that I feel understand are the oncology nurses and the ostomy nurses. Sometimes when i think too much i get in a bad space mentaly and think im gonna loose it. I'm feeling you guys and girls on this post. good subject it actually feels good to vent. thank you.
Tom

luvmum
Posts: 457
Joined: Dec 2010

I think my mum is currently locking herself up because of it ... she doesn't want to let her friends know about it, she doesn't want to see other people, except me... she doesn't want to talk about it... Sometimes I can tell she was thinking really hard but she refused to tell me her thoughts...

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

Yea, even though I have probably the most family, the most loving understanding husband, no one really knows......I MAY NOT BE HERE TOMORROW, HOPE AS HELL THAT I DO, BUT HELLO! I HAVE STAGE 4 CANCER..........LET ME ACCEPT DEATH, IT'S NOT THAT I AM DYING RIGHT NOW, BUT HELL I COULD BE TOMORROW. YES, I AM LIVING FOR TODAY, BUT THAT DOES NOT MEAN THAT BECAUSE I AM NOT LIVING FOR TOMORROW OR NEXT WEEK THAT I DON'T THINK OF MY GRAND KIDS'S GRADUATION OR WEDDINGS. HELLO!

But, yeah, I am loved. Every day. But.....I can be lonely thinking of what may not be. And it is okay. And, I don't care that I didn't do the dishes today......what, oh, I can do laundry tomorrow. "I am not depressed, I am in cancer mode." Don't care, you can do the laundry if you like, but it can wait until tomorrow and if I am not here, you can do it! k...

No, really. Right now I making the fixings for 35 dozen tamales that we will make tomorrow morning. I will probably be tired tomorrow night, but, I will sleep in on Monday...an appointment Monday, hmmm, not sure, I will check it tomorrow.

Got to go.....love ya!

glinka65
Posts: 132
Joined: Feb 2009

loved your post!!!!1 stage 4 as well and who knows??? sometimes we just need to be pissed, as much family you have , and how well they mean they just dont know, i do know i feel a little better by reading your post!!!im betting those tamales will be kick ***!!! merry christmas to you and your family!!

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

Thanks, here's to you! Pm, me anytime! Merry Christmas to you! Going to bed...take care!

tina dasilva's picture
tina dasilva
Posts: 644
Joined: Sep 2010

as you all know i'm a caregaver to my husband who has stage 4 i love him so much i would die to keep him alive . the last month or so ive been feeling very lonely i been taking care of everyone in my home even more so after we found out about the cancer with no help from family they try to tell me what to do you get Jorge better but no one has tried to help so you ask do you ever get lonely yes .i think being a caregiver is just as hard to deal with as having the c .as of right now i'm caring for my husband my 3kids 2 grandkids and 2 awesome foster boys who so needs my love and to top it all offf a 7 bedroom house to clean what the hell was my husband thinking when he want to buy this big house .i lie in bed and i ask why me what did i do wrong .so for going on like this i think the post was for someone with cancer but i just need to said it hugs to all Tina

Lovekitties's picture
Lovekitties
Posts: 3323
Joined: Jan 2010

Dear Tina,

On this board everything is for everybody, be they patient, caregiver or just a friend.

I sometimes think the caregiver has the worst part of this. The only part of this disease you don't deal with directly is the physical problems. Everything else is on your plate too just from a different viewpoint, and you have the added stress of wanting your loved one better but can't fix it.

Be assured YOU DID NOTHING WRONG. Cancer IS NOT a punishment we bring on ourselves or others.

Even without having to deal with your husband's cancer, you have your hands full with that crew! Be sure to take some time for yourself, you deserve it.

Hugs,

Marie who loves kitties

Lori-S's picture
Lori-S
Posts: 1287
Joined: Sep 2010

By all means post away. I have been a caregiver for my youngest son for almost 24 years so I understand the loneliness of a caregiver. We all have our prespectives and yours is just as valid as the cancer patient's prespective. HUGS to you!

Lori-S's picture
Lori-S
Posts: 1287
Joined: Sep 2010

I have some really great friends and family but, this is my cancer and not theirs. Oh yes, they are affected and definitely experience the collateral damage. But, ultimately it is my diagnosis and I carry it. When I tell close friends and family about what is going on, I deliver it in a rather nonchalant, matter of fact way to them. Not like I do here where I can express things in the way they are flying around in my head. I think that's my way of protecting them.

I just found out yesterday that my ex-husbands wife was dx with breast cancer last week and is having surgery on the 23rd and will be spending Christmas in the hospital this year. I think about that and really feel for her. Christmas time now will always bring up cancer for her no matter how good her prognosis is. Thankfully they caught it early. My ex and his wife has been so supportive and helpful since my dx and now I feel I might be able to return the favor in a small way by being supportive of them.

Yes, cancer is lonely. Part of my loneliness comes from my attempts to spare others the grizly details. I'm not overwhelmingly lonely but, there are moments when it catches me and I get to sit with it for a bit. That's one of the reasons I am so grateful for my semi-colon family. I'm sure I'd be much more lonely without you. Feel the love!

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

When people say "I know what you are going thru", I just smile, and say thank you...unless you have heard those three words, it's just not real. And, now that I look 'normal' and 'healthy' and 'better than ever' people tend to forget the scars I have. Including the sensitivity to milk and other stuff. They serve me their fancy ice cream desserts, and I smile, and take a few small spoonfuls, not saying a word, but so lonely inside. It bothers me enough that when they have the balls to ask why I'm not eating my dessert, I tell them flat out..."Remember, I've told you that from the treatments, I'm lactose intollerant?". But if they don't ask, I just leave it alone. Or, giving up, I just say "Oh, I'm so full".

The danger when I started looking 'normal' (you should see me without clothes...well, no, you should NOT...lol!) was that people expected me to be my 'old' normal. My summation is we cancer warriors are the 'walking wounded'. Like Ron said, I don't want sympathy, I just was tollerance...sigh...

Hugs, Kathi

plh4gail's picture
plh4gail
Posts: 1238
Joined: Oct 2010

It took me awhile to decide to answer this question or not. I think I am lonely as in even though I am surrounded by family and friends that love me, this is ultimately my diagnosis and as much love and support revolve around me, no one can step into my cancer. There is a part of my personality that it has changed. First I want to tell you that I was nominated Nurse of the Year for Compassion at my Hospital. Not once, but three times! Made me cry at finding out my peers saw something special in the way I thought I was just doing my job. Now,I am still the same person, but.... Tolerance? Acceptance? What I will and will not put up with. That HAS changed! Are you wondering what this has to do with being lonely and why I am ranting about it?....I did something last week that I am not proud of, but I just felt I could not put up with it or go on with it any longer. I broke up with my boyfriend the week before Christmas. He was not taking care of my emotional needs, and yes it was making me feel lonely and isolated. I told him, asked him, showed him what I needed and it was only the basic's, the fundamental's of a relationship. Love, support, and acknowledgement. I tried to explain to him how the written words "Hope you're feeling better today" and asking someone "How are you feeling today" are so different to me (he didn't even know I was having a good day). He called me negative. There is much more, but basically revolves around the same idea. I feel guilty and mean and selfish for doing this at the Holiday's. It was just such a conflict of my emotions to have to ask someone for something I felt they should be wanting to give on their own.

Sorry about the vent session, Gail

TMac52's picture
TMac52
Posts: 358
Joined: Aug 2010

Go ahead and vent Gail Thats what I think ive been doing and it feels right to get it out. If we don't have a therapist to dump this stuff on leave it here !!!!
You are loved!!

ron50's picture
ron50
Posts: 1720
Joined: Nov 2001

Looking after yourself is not mean and selfish. Using people is mean and selfish and you sure don't come across as a user. I know what you feel like. When it didn't look like I was going to make it ,the comment I most heard was'you can't die,who will fix our machines?' Well I am tired of being used as are you. My wife just turned to me one day and said'I have no life with you,you are always sick,I want you to leave.' So I did . It nearly killed me because I still love her. In one way she is rightI am sick and getting sicker so I have become self contained. Every day I battle through work and every now and then I try and get away fishing to heal my soul a little,,A good day is when nothing really bad happens...((((((gail))))) Ron.

TMac52's picture
TMac52
Posts: 358
Joined: Aug 2010

Hey Ron where do you live I want to go fishing with you! No one going through what you are should be alone dude!!!

ron50's picture
ron50
Posts: 1720
Joined: Nov 2001

I'm down under mate ,I live in a small town called Nambour in Queensland on the tropical east coast of Australia. Not always alone ,some of the areas i go to fish have a very healthy croc population though I have a feeling with some of the meds I've been on even they might reject me:):)Ron.

Kenny H.'s picture
Kenny H.
Posts: 503
Joined: Aug 2010

May the fish be with you bud!
Sorry to get off the topic but as a fisher freak myself i would love to fish the down-under.
What kind is that your holding? Mine in pic are speckled trout.
Fish here in S.tx coast. Lots of large species in the Gulf of Mexico, but I prefer the shallow inland flats. (water 2ft deep max) wade and use kayak.

ron50's picture
ron50
Posts: 1720
Joined: Nov 2001

It is a 35lb estuary cod ,They spend there early days in the rivers and creeks then as they grow they move out to the inshore reefs. They can get up to 200lb but any thing over 30-40lb I let go. the younger they are the better they taste. I used to fish out of an 18 footer but now i can only manage a 12 footer:) Ron.

TMac52's picture
TMac52
Posts: 358
Joined: Aug 2010

HAHA Thats funny being rejected by a carnavor beacause of chemical taste!!!!
Well wanted you to know that your story touched me friend and although your a world away I have you in my thoughts and prayers.

AnneCan
Posts: 3692
Joined: Oct 2009

Gail, with these matters it is important that you follow your heart. If your boyfriend did not fufill your needs, it is better he is gone. I think you can sometimes feel the loneliest in a relationship which is not going well. I have had people email me + say, "I hope your feeling well". That kind of annoys me; I know they mean well but it almost seems like they don't want to hear about it if I am not feeling well. Often after that they just switch to a different subject.

thxmiker's picture
thxmiker
Posts: 1282
Joined: Oct 2010

I try and get out of the house three times a day. I walk the dogs around the neighborhood no matter how bad I feel. It gets me out of the house, and it gets them a chance at exercise. Although they run around the house and yard all day. (We have a Peke-a-mut Pekignese mut, and a Behuahua - Beagle Chihuahua mix.) I also go to the grocery store most days. I can pick out the freshest veggies, and have a little outside human contact.

I have family and many friend's support, but getting out helps the depression.

Best Always! mike

Nana2's picture
Nana2
Posts: 255
Joined: Mar 2010

Mostly I'm lonely for Jim. For the past year I have been his caregiver and he has pushed me away somewhat as his "wife." I miss the way we used to be...Sometimes I just miss him.

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Sometimes. Of course I haven't had the very rough road with cancer that so many of y'all have had, but I do feel like there's a part of me that most people don't understand now.

*hugs*
Gail

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Even after being on chemo for 3-1/2 years now, I still sometimes can't believe that I really have cancer. That this is me- this is my life now. I hear other people talk about it, see people talk about it on TV, and almost feel shocked to think that I have cancer too. That the person's obituary I read about in the newspaper today who "lost their battle with cancer after 5 years"- that that could be me. I guess I feel the most lonely when I think that I'm different from all my friends and that they'll never know exactly how I feel. I pray that they don't- that they are spared from ever experiencing cancer.
I imagine my funeral sometimes- do you all ever do that? I hear a song that is especially moving & I think about how I'd like that one played at my service. Then I imagine what my husband and kids' faces will look like during the service. WHY do I do that??????
I HATE that I do that! I want to live!!! I don't want to think of the sadness my family will go through if I don't make it. I know life will go on without me- life always does go on, but I want to be part of it all!!!
I hate that I have to carry this burden of wondering if I'll be alive when my kids get married or have my grandkids- or if I'll even see them graduate from high school. YES- I want to live!!! I feel far from dead now, but I know how quickly it can go downhill too & that is definitely a lonely, scary feeling. I have gotten stronger in my faith in Jesus since thinking about all this & that definitely makes me feel less alone, but makes me feel even more alone and different from my friends.

I'm grateful for this forum that we can share these feelings with each other- we're all here for each other & we all GET IT.

Hugs to all,
Lisa

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

Great heartfelt post Lisa, and yes I do. I have a folder on my i-tunes with my favorite songs, a folder with my favorite pics (I look hot, of course1 lol). You are not alone. Funny, no not funny but I have the music the slide show for my own funereal. Now that is strange!

ron50's picture
ron50
Posts: 1720
Joined: Nov 2001

I'm 60 yrs old and I refuse to make a will is that mega denial or what. Perhaps if you listen to my reasoning I'm gonna live for ever. I used to sing an old flash in the pan song in chemo. I used different words.."hey there St Peter,before you ring your bell,just come down to survivor town,we've done our time in hell!" Now cheerful thoughts and a merry Christmas.Ron.

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

I'll come fishing with you, my dear!!! I have almost 200000 frequent flier miles...do you suppose that's enough for a RT to you?

Whew! I'll tell ya, I'm trying to unravel the estate I call my mom...sigh...she has dementia, and trying to find out where things are from her is a real challenge...I am trying to make things easier on ME (of COURSE it's all about ME...lol) when she dies...

In America, if you don't do things right, the goverment gets half. Of everything. So, that is the ONLY reason I have all of my estate (will, advanced directive, etc) in order....the only thing I hate worse that cancer is the Federal Government!!! ROFL!!!

Hugs to you, my dearest friend!

Hugs, Kathi

angelsbaby's picture
angelsbaby
Posts: 1171
Joined: May 2008

every minute of the day, missing my husband angel

michelle

johnnybegood's picture
johnnybegood
Posts: 1122
Joined: Oct 2008

hey michelle we often think of ouselves being lonely and not others.my heart goes out to you.its one thing to have had cancer and live with all the nasty side effects but loosing a loved one to it...i cant imagine here is a hug for you((( ))).i think of you often Godbless...johnybegood

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hey Johnnybegood... good to see a post from you- haven't seen you post in quite a while and have been wondering how are you??

Lisa

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

Hugs Michelle!!

lesvanb's picture
lesvanb
Posts: 911
Joined: May 2008

((((((hugs))))) and Christmas blessings to you.

Leslie

dorookie
Posts: 1736
Joined: Jul 2007

I am sorry your lonely, I know I cant do anything about it, but wanted you to know I do care about you.

HUGS
Beth

annad723's picture
annad723
Posts: 44
Joined: Nov 2010

Hi Lisa,

I so get what you are saying. I already have the funeral planned in my mind. What a sicko I must be!!!

I also feel alone with my cancer. I have a wonderful husband and 2 beautiful sons that can't do enough for me, but still I feel alone. This board is very important because unless you have cancer, stage IV, unfortunately, no one can truly understand what we are going through.

I am going to try to focus on being happy this Christmas. I am here feeling physically fine. My sons are here, my husband is here and I have to stay in the positive. Thanks for posting Lisa.

Anna

annad723's picture
annad723
Posts: 44
Joined: Nov 2010

Hi Lisa,

I so get what you are saying. I already have the funeral planned in my mind. What a sicko I must be!!!

I also feel alone with my cancer. I have a wonderful husband and 2 beautiful sons that can't do enough for me, but still I feel alone. This board is very important because unless you have cancer, stage IV, unfortunately, no one can truly understand what we are going through.

I am going to try to focus on being happy this Christmas. I am here feeling physically fine. My sons are here, my husband is here and I have to stay in the positive. Thanks for posting Lisa.

Anna

annad723's picture
annad723
Posts: 44
Joined: Nov 2010

Hi Lisa,

I so get what you are saying. I already have the funeral planned in my mind. What a sicko I must be!!!

I also feel alone with my cancer. I have a wonderful husband and 2 beautiful sons that can't do enough for me, but still I feel alone. This board is very important because unless you have cancer, stage IV, unfortunately, no one can truly understand what we are going through.

I am going to try to focus on being happy this Christmas. I am here feeling physically fine. My sons are here, my husband is here and I have to stay in the positive. Thanks for posting Lisa.

Anna

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

I am always thinking of ways to love the wife and kids better today.

The depth and quality of the love we give and share today is the only thing that will
last a generation. Feel all the feelings but ultimately let out as much love and care as you can. Excercise your heart. I am honestly trying this everyday.

All my friends will be
happy at my funeral that I loved them as much and as long as I could. thats enough and thats all we can do anyway.

I hug all my friends goodbye now even the men.

hugs to you
Pete

Holdtight
Posts: 151
Joined: Aug 2009

Thank You.

AnneCan
Posts: 3692
Joined: Oct 2009

Mags,

At some point almost every day I feel some loneliness. It is a lonely disease. Some of my friends have basically disappeared + others have appeared out of nowhere. Sometimes I have to push myself to go out; you get tired of being the one with cancer. I belong to a bookclub. One month we were reading "Still Alice", which is about a female professor who has Alzheimers. When she is first diagnosed she makes a comment that she would rather have cancer than Alzheimers. I had to endure ~ 15 minutes of some members discussing that + how they agreed + why cancer would be better than Alzheimers. I was shocked that they would be so insensitive to me sitting there with cancer. I wanted to speak up but tears stopped me. I don't know if I have ever felt so lonely. They were saying how people are treated differently when people realize they have Alzheimers. I wanted to shout, "Hello, I feel like I am treated very differently since I have been diagnosed." I went home + had a good cry after.

plh4gail's picture
plh4gail
Posts: 1238
Joined: Oct 2010

Oh Anne, that hurt's my heart that you had to hear that. Would have given you a good hug through my tears too.

christinecarl's picture
christinecarl
Posts: 545
Joined: Sep 2009

How dare they judge how it would be to choose one disease over another as if they were choosing a dinner off of a menu. The worst part is you were sitting right there and they knew. I seriously want to kick some book club butt.

Granted Alzheimers would really suck, cancer not exactly a walk in the park either.

sigh, ok rant over

AnneCan
Posts: 3692
Joined: Oct 2009

I was pretty upset, to the point where my husband was encouraging me to quit the book club. I talked it with one of my friends who was there afterwards + she said she wanted to redirect the conversation but was afraid that would be even more awkward for me. It is a large book club (15 people) + it was 4 or 5 people engaged in this conversation. Thanks for validating my feelings; I was worried I was too sensitive or something.

lesvanb's picture
lesvanb
Posts: 911
Joined: May 2008

The others weren't sensitive enough. I, for one, benefit from your sensitivity. Thank you.

all the best, Leslie

AnneCan
Posts: 3692
Joined: Oct 2009

That was very sweet! All the best to you too! Of course I don't have all your details, but I have a good feeling about how things will go for you. I know you can't cash "a good feeling" at the bank, but I wanted to let you know. Keep feeling good!

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