Cancer is a lonely experience ...

arby

Today, I realized that one of our opportunities is to educate our friends and associates to the down side of our cancer experience.  So I encourage all of you on this thread to continue to be honest and identify those feelings that have you in knots.  Writing, support groups and even showing up here has been a real breakthrough of blessing for me.  I'm relieved to know I AM NOT ALONE.  You're all here.  God is here!  (though at times even He feels distant, especially when I ask too many ? about this recurrence.)  the first round in '07 was like a privilege to walk where others had walked.  But this time....I didn't think I needed it and I usually "go there'" trying to figure out what the purpose of this experience is.  so far, its just been taxing to body, mind and spirit.  thanks for starting this thread and thanks too to dreaming and emharris as their posts nudged me !    I'm saying a prayer for peace for each of you.  arby 

ps  I have had all of the emotions you listed and sometimes very close together.  Reminds me of being pregnant and wearing my emotions on my shirt sleeve.  (can't blame it on my hormones now).

Kleenex

This is for ReneeJean - I got your private message, but was unable to reply. I got a "ReneeJean is not accepting private messages" pop up. Just wanted to thank you for the nice message, and to let you know that I will be at the Burleson/Mansfield game this week, as I have a freshman french horn player in the Mansfield Marching Band! Sorry about your homecoming - we played on Saturday up in Irving, and only the brass students actually were allowed to have instruments.

Coleen

pabbie

Hi-I'm feeling lonely today in my cancer experience. I have no one that understands when my life is going in a good direction and I definately don't feel the love from my family of origin.

I wanted to say thank you because this is a place I can come to and feel supported and loved.

Thank you God, breastcancer.org, and my psychiatrist.

Dolores81035

Yes cancer is a lonely experience. People tell me I look too healthy to have BC.  They all tell me "oh you'll beat this your way to strong not to."  I know looks have nothing to do with cancer survival. I am so glad for this support on-line I don't feel alone at all. I thank God for all mercies big and small. I write a journal of everything that went well each day. I thinks this helps to see the brighter side of life.

EWB

yes, this IS an chance to educate, but to be honest, I don't want to be educating all the time! especially when it is often the same conversation  withe the same people---people should at least pretend to remember the past umteen conversations about the same info. I don't know where everyone else is in their staging but for stage 4 it really sucks. How do you NOT think about it a lot? how do you NOT want to plan funerals, wills, advance directives, wonder what will be the next thing to happen and when? No one wants to talk about that stuff..no no they all say, you are doing great, you'll be here a long time and will probably die from something else, besides we are all going to die...ARGH but everyday these people don't wake up and take pills that will help keep you alive and at the same time cause SEs that are hard to live with , reminders all the time ..... no matter who tries to understand and help- it is a lonely walk

2Hands4me

EWB - I agree......This is a good chance to educate and maybe help someone else be proactive or walk this path. But I too am tired of discussing my body parts with so many friends over and over and over! (Actually no one knows yet that I'm having surgery again, but I already know I'm tired of discussing it!).

I think it's ok to think about the practical sides of our diagnosis, to feel the emotions, to express ourselves (sometimes in saying or writing what we feel, you understand better and get a better perspective). It isn't good to stuff feelings - that can lead to physical problems or being overwhelmed when those stuffed feelings pile up and pour out all at once over something trivial!

I'm so glad that God knows the lonely feelings too! He suffered alone on the cross for all of us so He knows how it feels. And He has promised to never leave us. Since He always keeps His Promises, we can know He is there even if it doesn't feel like it.

EWB

I apologize in advance for the rambling, may not make much sense but it helps to get it out.

I am coming up on 3 yrs since dx, while I should be happy and all, I am walking around with a knot in my stomach, a feeling of dread and I can't look at a picture of my children with out crying. It kind of all snuck up on me and its awful. My dh is wonderful and is desperate to help, to do something but I don't know what, if anything will help.All I really want is to be at home and held/hugged by dh. I feel so much safer at home, but I can't stay in the house forever and dh has to go to work.

I look back at the past 3 years and wonder what the heck did I do during that time? Seems like I should be doing something, something important and meaningful. Why do I feel guilty for worrying about myself? It makes me feel selfish and needy and phony. But I know I am not any of those things, I don't quite know where that is coming from which is pretty frustrating. I can't fix this and Ifix things, at least for everyone else....Its an odd thing, I am stage 4 and feel like I have been very luck that I did not have surgery and the onc is hold chemo for when other things don''t work. Stage 4 and I feel like a whiner when I have bad days..what the heck is this? I am tired of feeling or telling myself I am lucky and grateful for all I have, for the way treatment has gone, for having such help and support and all from my family/friends. I don't want to be positive and hopeful to the outside world...but I don't know how else to do this. I want this to all go away, but I am not sure I would want my old life back either so here I am in no man's land not knowing what to do or think.

KAK

Oh, Elaine...I'm having such a bad time today, I can't even talk or write much.  But I feel just like how you described yourself today. 

It's been a year for me, and no, I'm not okay.  And I hate being asked how I am these days, because I'm too fatigued to give anything but an honest answer.  I don't have the energy to spare anyone's feelings.  I will never feel 'grateful' for having breast cancer and I don't think any of us need to give it any gratitude whatsoever.  Whatever good we wring from this experience has nothing to do with the cancer itself and everything to do with what stern stuff we are made of and the choices we have made in reaching out to each other and who we really are inside.  So, I'm grateful for all that, yes, but not for the disease itself.

lovemyfamilysomuch

EWB and KAK, Cancer is f***ing lonely.  I hate it.  The people on these boards seem to be the only ones who really get it.  My family is so wonderful, but they have assumed I have just gone on with my life, and I have, but some days I get hit with the same stuff you are describing.  It does feel lonely, but I want you both to know that you (we) are not alone and we have each other--supportive, caring, non judgemental individuals who know how it is.  In sisterhood, xo

mumito

Elaine and Kathi

My weekend was the same I am so emotional and miserable after this last surgery.Its been 11/2 years since Dx and emotionally draining for me.Tomorrow I have to get fluid drained from under my arm and I hope its not the start of LE.Everyone knows I am a tough woman but somedays like today all I want to do is cry.Sorry i just feel like  rambling today.

Ainm

Ailenroc - you know I could have written this post. Lonely, scary, isolating plus all the f*****g side effects - I fear for my sanity.

EWB

lovemyfamily and Kathi- I can not imagine what it must be like having expectations that you are alright and better now that treatment is over. I understand that physically it takes time to recover from all the rather harsh stuff that has been done to your bodies, but the mental and emotional stuff does not go away either.

Kathi, I know you have been really struggling with the fatigue, what a crappy reminder. I don't know how you do it with what you do as a PT and the art and all.Is the stuff you are on for the study helping at all?

My heart goes out to you all !!

I've been thinking that there needs to be more information out there that is not all "I had cancer but I beat it and it was a gift and the world is happy again" kind of stuff but "No, I'm NOT ok, and someone needs to comeup with stuff to help" kind of things. People need to hear about these things, the aches, fatigue, etc. That they make things difficult (and for people like me this teatment stuff is hopefully longterm) and last much longer than most people realize.

EWB

Oh Mum- I was writing as you were posting...No no no, never apologize for saying how you feel! We (women)  have got to get over this thing of apologizing and not being open and honest about whats going on, about what we need. No one is going to come up with answers and solutions if they don't know there is a problem, if we don't speak up and say "No, I'm NOT ok". It is OK to speak up...men do, children do...now its our turn!!!

You have been thru so much physically and emotionally in the past 1 1/2 yrs! To have gotten thru what you have so far shows that you are really strong, we are so much stronger then ever imagined, because there wasn't much of a choice! Sending gentle hugs to everyone.

cmharris59

bump

ailenroc

Time to browse through your rolodexes, accept all holiday invitations, through a party yourself, get your own facebook site, start blogging, join a suport group, make love .... any more ideas?

.... because:

Loneliness 'raises cancer risk'

Fresh evidence adds weight to suggestions that loneliness makes cancer both more likely and deadly.

Work in Proceedings of the National Academy of Science shows social isolation tips the odds in favour of aggressive cancer growth.

Rodents kept alone developed more tumours - and tumours of a more deadly type - than rats living as a group.

The researchers put it down to stress and say the same may well be true in humans.

Cancer experts say more work is needed to prove such a link in people.

Lead investigator Gretchen Hermes, of Yale University, said: "There is growing interest in relationships between the environment, emotion and disease.

"This study offers insight into how the social world gets under the skin."

Stress

Doctors already know that cancer patients who are depressed tend to fare worse in terms of survival.

" It's possible that stressful situations could indirectly affect the risk of cancer by making people more likely to take up unhealthy behaviours that increase their risk "
Ed Yong Cancer Research UK

And previous research has suggested that social support can improve health outcomes for patients with breast cancer.

In the latest study, the researchers found that isolation and stress trebled the risk of breast cancer in the naturally sociable Norway rats.

Outcast rodents developed 84 times the amount of tumours as those living in tight-knit social groups, and the tumours also proved to be more aggressive.

The isolated mammals also had higher levels of the stress hormone corticosterone and took longer to recover from a stressful situation than fellow Norway rats.

The researchers ultimately hope their work will help cancer patients.

Lifestyle

Co-researcher Martha McClintock, a psychologist at the University of Chicago, said: "We need to use these findings to identify potential targets for intervention to reduce cancer."

Ed Yong, of Cancer Research UK, said: "This study was done in rats.

"Overall, research in humans does not suggest there is a direct link between stress and breast cancer.

"But it's possible that stressful situations could indirectly affect the risk of cancer by making people more likely to take up unhealthy behaviours that increase their risk, such as overeating, heavy drinking, or smoking."

Story from BBC NEWS:
http://news.bbc.co.uk/go/pr/fr/-/2/hi/health/8398728.stm

Luckily we are not rodents. There is much research though that speaks to the positive benefits of social support. Here is an idea for those who may not have a large social network: if you can, befriend a person in need, an elderly person in a retirement of nursing home, a child in a children's home ... for regular chats, walks, or reading out loud sessions. Helping others is quite empowering and provides you with company. Happy holidays to all my sisters here.

KAK

And also, laughter is very good medicine.  As well as dark chocolate.  I'm just saying...LOL

reeen

I just discovered this & read through all the postings.  It is good to hear of similar experiences.  I too have felt isolated & lonely, even with the loving support of friends & family.  No one wants to hear about fear of recurrence - "you'll be fine"   Today I had my first followup mammogram - tried not to worry - but a wave of fear hit me a few times.  It was clear whew!    But then I heard those words..."I told you so"    *sigh* 

EWB

at least we have each other!

KLee

Its strange how you can live with people but still be all alone. I have been on this lonely journey for 17 years now, the last 10 years with stage IV. All things considered, i have maintained fairly well until the past 6 months. I am on weekly chemo., (taxotere), can't eat, and most days I find it hard to even get up out of bed.

My husband and I have been married for 28 years, and we had a mostly good marriage, until the last few years or so. Actually, when I really analyze it, the fun seemed to stop when he stopped getting nightly or weekly sex, due to my diminished health and certain medications I am on. He says its not about the sex, but, it is. He is self employed, and has always poured himself into his work. He has been a good provider. I have been out of woprk for the past 10 years, and I really miss it. I have lost friends and especially family over the years, and now, even my husband. He is always so miserable, it is difficult to be around him. We have always been best friends, but that is pretty much gone as well. When he is home, we spend all of our time apart, in separate rooms, and may utter a few sentences to each other in a 24 hour day. He ignores me, and resents me and what my cancer has done to "US".

No one ever calls me, ( I have 3 siblings who live close by), and everyone acts like I have already died, especially my husband. I have 3 grown children, with our youngest still living at home, but they rarely help me or my husband. The holidays are even worse. When the chips are down, I have certainly found out through the years, that you can not rely on anyone except YOURSELF. This has been my experience.

Sorry to rant...just had to blow off a little steam. I could actually rant alot more, because its alot worse, if you have even heard some of the stories and the crap that I have dealt with for years, most people wouldn't believe it.

Makratz

(((((((((((((((((((((((HUGS)))))))))))))) Klee, I sure hope you feel better getting that off your chest.  Sorry life sucks so badly for you know.  Please come to these threads for support and to realize you are NOT alone.

EWB

Linda is right - come here and get it out - the good the bad and the ugly!  So sorry you are having a tough time, seems so unfair with all the crap we've got to deal with - to throw that in....

I know its not the same as if we were neighbors and all but I'd love to chat with you. Our dx is similar, my children are in college and I really miss working, more for the companionship and some intellegent conversations (and there were people who cared what I thought & needed my expertise). 

Hope today is a little better for you...gentle hugs

susanmary

I think if it weren't for this site and the wonderful sisters here, I would probably have "lost it". No matter how close friends and family are, they don't seem to have any concept about how you are really feeling. Maybe, we can't tell them the whole truth as we do when we post on the board.

 Here's to all you sisters out there who make the journey a little easier  

Makratz

Amen, Susan!

lookingforward4more

Dear friends,

I too feel that cancer has been the hardest and most solitary experience ever. I survived six chemos, radiation, seven surgeries, and now three years later have nueropothy in my feel and fingers, lympodema in my cancer side arm, depression and some awful pain in my feet, back and hip. So far bone scans have been negative but menapause and weight gain have really added insult to injury. This week I had to resign a job that I have had for seven years because I just can't keep up and am in constant discomfort. The numbness in my feet translates to pain 24/7 and I take four percocets a day which barely touches it. I have three children, two grown and one 12 year old that I desperately want to see grow up.

My oncologist is supporting my application for social security disability but I know that I have an uphill battle to get it because thankfully I am not at stage 4. She thinks I will get it but most likely will have to battle for two years to make it happen. Money is a concern but I truly had no choice but to resign and I am so sad about leaving my good government job.

I often wonder if it will ever get better for me. I feel unattractive, sick and tired. My husband is supportive but the depression is really kicking in lately. I am 49 and feel 80. Most recently I was in the hospital for five days for a cellulitis infection in my cancer side lymph nodes where I had the axillery disection. Second time that has happened. I have low vitamin D, and low iron.

God bless all of you for being so honest and so kind in this thread. It feels good to just write down my feelings and share with you all who I know understand. My coworker is young and healthy and really has no clue and no sympathy. Friday is my last day at work and its a huge risk. My friend mailed me a picture of her favorite saying "Leap and the net will appear". I pray that is true.

jan508

looking:

I am glad to see this thread and would not have found it were it not for your post!

I hope all works out for you and I will pray you will feel better soon!!

I love your friends saying 'leap and the net will appear'.  Very cleaver

I"m going to my first support group tomorrow night because after 6 months of dealing with this (I'm a newbie) and having my reconstruction I feel that I need to speak to someone who 'gets it'. I know I have support here but I think I need to actually go face to face with other survivors.

I"m hoping for a good meeting tomorrow.

Thanks for bringing this thread into the forefront.

Jan

lookingforward4more

Jan, thanks so much for your kind words. I think that we deal with so much as breast cancer patients that when we are 'done" with treatment many of us just want to get on with things. I truly feel great for my fellow survivors who regain their health and hapiness after treatment and sometimes feel like there is something wrong with me that I can't make the same remarkable recovery. I take great comfort from reading peoples comments about their journey and I do gain strength from knowing that I am not alone!