Lonelier after each treatment
I started this process with a thankful attitude - thankful that I caught this early and I have an excellent prognosis. Thankful that I have good insurance, good doctors, a wonderful husband and kids. I still feel that way every day even when I feel horrible.
BUT, I am finding this to be a very lonely road. I am 49 yrs old and have no friends who have personally been through this and its difficult to talk with those that haven't. Even those that are closest to me have difficulty understanding the physical and emotional demands that are made on your body. Most shy away from even talking about it much, in fact, half the time I am the one telling the other person that everything will be ok - consoling them as their fears for themselves take over (which I totally understand). I've had lots of offers for help with shopping, meals, etc. but its the emotional toll, the not having anyone to talk to about this, that gets to me. I'll make it through this I know, my prognosis is great, but with each treatment I feel more and more alone. Its not depression, but that feeling of isolation, thats really getting to me!
I hate to sound like such a sap when I talk to anyone - unloading. Especially when I have such a good prognosis and I read so many stories that are so much worse than mine. I feel unbelievably guilty just admitting that I feel these things when my prognosis is so good.
Anyone else feel this way?
Comments
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Breast cancer support group would be good for you
Have you talked to your husband about your feelings? I know he can't totally understand, but, at least then, you would have the closest person to you to listen to you and hopefully offer some comfort.
But, it really sounds like you need to get into a cancer support group of some kind. I think every cancer center and hospital offer these. Contact yours to see, and, if they can't help, contact the American Cancer Society. They can always help you. They also have a 24 hour hotline with other breast cancer survivors to talk to if you want to try that.
Noone can ever fully understand what going through bc and the treatments is like unless they have been through it themselves. So, we can't expect them to. That is why it is important for you to be in some group where they are bc survivors because they will understand.
I have been so lucky to have the best husband, family and friends ever, as, they always will listen to me and help however they can. Although, I find I talk less and less about my bc anymore. I choose to live my life, and, to live it free of cancer, physically and emotionally. Talking about it only stirs up fear in me and I don't want to live in fear. I just want to live!
Breast cancer is my past and I choose to live in the future now! A great future!
Good luck to you,
Leeza0 -
Most of US
I had moved away from all my family and friends to start bring my family together. Boy now that I have been away all these years and going through health issues again it is a lonely journey but the telephone is an amazing invention. I have become closer with parents and some friends because I phone but it isn't the same. Everyone gets tired of hearing about the cancer thing including ones family but that is real and so need to find places to communicate and getting help is a very good thing.
I had a few friends who did understand actually better than I after loosing a loved one. It too is harder on those around us having to take a look at themselves when none probably truly want to. Fear is a crazy thing and allot of our lives are driven by it.
Hang in there if you look you too will find the help you need to keep on keeping on as one dear friend use to say here.
Tara0 -
YESYESYESYESYESYESYESYESYES!!!!!!!!!!
You are not alone. Not by a long shot. I doubt any one of us on this board feels like a Pollyanna EVERY moment of EVERY day- if someone does-please share with us what you are on! The truth is, I do feel lonely, sometimes. Cancer is really scary stuff! The good news is, right here are bunches and bunches of girls who have been through this. I haven't asked a single "stupid" question that hasn't already been asked.
For me, I felt guilty about everything. I hated being fussed over. Finally, I gave myself permission to heal, to learn, to rest...It was not easy to accept all of the help that was dumping on me. But, you know what? I am so glad I did accept it. I needed it, My family needed it, my friends needed to feel useful. It was all win/win. Look for a local group of breast cancer patients and survivors too. You will see how Not-alone you really really are. Please hang in there! This is really scary stuff, we know! Please keep us posted!!! xoxo Jackie0 -
Me too
and my dx was even easier. ER/PR pos, HER2 neg,Oncotype no. was 14, and node negative.Had
a lumpectomy in late May.No chemo just 5+ years of anti-estrogen meds and 35 treatments of
radiation.As my rad doc said "this whole thing is an inconvenience for you". Nice! We recently moved to where we are so this ordeal was in a new town.We know some people from
bowling and golf, but we've only known them for about 8 mos.My support network is all over the country.I can't "face to face" with anyone who's had this because they all live so far away so I can empathize with your feelings of isolation. I had a "woe is me" feeling for about 10 mins til my "survivor/warrior" mode kicked me in the backside and said "get over
yourself". I'm truly blessed and thankful for my conditions, as you said, there are so many others facing difficulties and I should quit whining. What annoys me are some looks people give me when they hear I have it--like I have cooties or something.One lady gave me
the "oh that is just the most awful thing"- I about went ballistic. I told her "Thank you very much for that vote of confidence, but I hate to inform you it's not a death sentence."
My SO Frank has been a real trooper through this, but I had to tell him a couple of times--
"Do not hover". I do everything I did before May 27th--I refuse to let "it" think "it"will ever get the upper hand. However--I am lonely.I really need to have "female bonding" but
that's not gonna be happening anytime soon. I don't feel guilty that I feel that way and you're right, it's not depression, it's this under current that's just far enough away I don't let it dominate. Thankfully this board lets me unload and although I can't get a
physical hug, I know the hugs are there--and that's an enormous boost.0 -
I get itstarseed said:Me too
and my dx was even easier. ER/PR pos, HER2 neg,Oncotype no. was 14, and node negative.Had
a lumpectomy in late May.No chemo just 5+ years of anti-estrogen meds and 35 treatments of
radiation.As my rad doc said "this whole thing is an inconvenience for you". Nice! We recently moved to where we are so this ordeal was in a new town.We know some people from
bowling and golf, but we've only known them for about 8 mos.My support network is all over the country.I can't "face to face" with anyone who's had this because they all live so far away so I can empathize with your feelings of isolation. I had a "woe is me" feeling for about 10 mins til my "survivor/warrior" mode kicked me in the backside and said "get over
yourself". I'm truly blessed and thankful for my conditions, as you said, there are so many others facing difficulties and I should quit whining. What annoys me are some looks people give me when they hear I have it--like I have cooties or something.One lady gave me
the "oh that is just the most awful thing"- I about went ballistic. I told her "Thank you very much for that vote of confidence, but I hate to inform you it's not a death sentence."
My SO Frank has been a real trooper through this, but I had to tell him a couple of times--
"Do not hover". I do everything I did before May 27th--I refuse to let "it" think "it"will ever get the upper hand. However--I am lonely.I really need to have "female bonding" but
that's not gonna be happening anytime soon. I don't feel guilty that I feel that way and you're right, it's not depression, it's this under current that's just far enough away I don't let it dominate. Thankfully this board lets me unload and although I can't get a
physical hug, I know the hugs are there--and that's an enormous boost.
I totally get it. It is lonely and only people who have been there, truly understand. People try, but....
Sorry, I'm a debby downer today.0 -
I feel this way too. Forpatti anne said:I get it
I totally get it. It is lonely and only people who have been there, truly understand. People try, but....
Sorry, I'm a debby downer today.
I feel this way too. For awhile, i was also so grateful for everything. But it seems like now, everything is going downhill. And, yes the lonliness is too hard to bear at times. Even if I am around people, i still feel so sad and alone. But that is why i come here, i read your stories and then i am not all alone, even though you are not personally in the room with me, i sometimes feel better.0 -
Thanks for the posts! I'mmeena1 said:I feel this way too. For
I feel this way too. For awhile, i was also so grateful for everything. But it seems like now, everything is going downhill. And, yes the lonliness is too hard to bear at times. Even if I am around people, i still feel so sad and alone. But that is why i come here, i read your stories and then i am not all alone, even though you are not personally in the room with me, i sometimes feel better.
Thanks for the posts! I'm new to all this online posting so I appreciate the response!! Yep I'm definitely a Debbie downer today. Day 4 after chemo every time seems to be the killer day for me. I'm sure I will feel better tomorrow. Just sometimes need a boost! Yes I called about a bc support group and hope to get there next week. I know this will help. My hubby's is a good man and has been wonderful but he has a high stress job and I try not to burden him too much. My 2 teenage boys have been awesome and I know they will be changed for the better through all of this.
I love to travel and it's been a rough summer hearing about all the trips friends have taken. We'll just have to plan a big one next summer to make up for this one!0 -
Awesome!kdw1008 said:Thanks for the posts! I'm
Thanks for the posts! I'm new to all this online posting so I appreciate the response!! Yep I'm definitely a Debbie downer today. Day 4 after chemo every time seems to be the killer day for me. I'm sure I will feel better tomorrow. Just sometimes need a boost! Yes I called about a bc support group and hope to get there next week. I know this will help. My hubby's is a good man and has been wonderful but he has a high stress job and I try not to burden him too much. My 2 teenage boys have been awesome and I know they will be changed for the better through all of this.
I love to travel and it's been a rough summer hearing about all the trips friends have taken. We'll just have to plan a big one next summer to make up for this one!
That sounds so great! We want pictures! Hang in there-xoxo, Jackie0 -
your not alone
Hi - I am not a breast cancer survivor but a sarcoma survivor. The cancer road is a jorney that noone can understand unless you have been there. I understand the lonliness as i felt and still feel that way(finished tx in may)I have a loving family too but it is impossible for them to truly understand. They are supportive as much as they can be but they really don't get it. I too have a good prognosis and feel guilty at times that I am not truly happy...i am still recovering and it is a slow process. I am 45 and miss my life.
Treatments are rough and each one gets harder on the body. You have already been through a lot and need to give yourself credit for how strong you are. This spot is a great place to talk with others. I like the chat site where so many have helped me. Have you chatted?
Everyone here even though different cancers can relate on some level. The journey is not something any of us asked for but can make you stronger. I have gained a lot of strength through this site and met a lot of great people. Be kind to yourself and know that you are not alone.
Leanne0 -
you say you feel lonely
i have learned to trust in life. i listen to myself and go by what i hear (feel). when it concerns only me i deal with it myself and change things to make it good for me. if it concerns others, for example they are the cause of my bad feelings, I tell them. they may not be aware of it and might be thankful to know so that they can do something about it. they may go away, too, because they lack understanding. whatever happens is ok. I leave things to develop. i have cancelled the word 'fault' or 'guilt'. i only talk about cause. it makes issues seem naturally easy, without burden. once i have shared my feelings with the person concerned, i 'let go' of the issue for further development. there is nothing i can do at this stage. people need time to consider and react. and we have all the time for all that, when we trust. at this point i say 'thank you' and let go. at this point i create a vision of what i want. sometimes the vision is still blurred. that i ok. i know i still need time to consider what i want. trust comes in again. what is important too, is to love yourself and accept how you are and let the others be themselves i am my only measure. i learn from the past, live and enjoy now and look forward to the future. having the three time zones which are in motion all the time, keeps us in motion. motion is health! sometimes we think of motion as in physical excersice. it is the mental movement that is important, too. i is important to make a dicision. i have decided for myself. nurturing myself makes me strong for myself and then for others. i am nothing without my love and respect for myself. only deeply in love with myself i feel i can love others and be loved and respected. love, Danuta0 -
yep, I feel the same.
I was diagnosed when I was 49, also. DCIS, Stage 0 and went through radiation only. I have gone through this walk completely alone. My husband tries, my 2 teenagers do, also...but friends, family? Where are they? Work, what a joke. I am so lonely and depressed. I am on an anti-depressant and in therapy. There is no support group within 50 miles of me. I finally gave up doing anything. I figured if nothing got done, someone would step up and do it. The house hasn't been cleaned since March. Bills have piled up, left unpaid. I finished radiation on 5/28 and stll am horribly fatigued. I finally was able to catch up the checking account. It hadn't been balanced since Dec. '09.
I hear you loud and clear when you say you sound like such a sap. I, too, have a good prognosis, but it doesn't stop all the emotional baggage.
I'm glad I found your post. It's nice to know that what I am feeling is "normal".
Betsy0 -
Thanks for posting thatstarseed said:Me too
and my dx was even easier. ER/PR pos, HER2 neg,Oncotype no. was 14, and node negative.Had
a lumpectomy in late May.No chemo just 5+ years of anti-estrogen meds and 35 treatments of
radiation.As my rad doc said "this whole thing is an inconvenience for you". Nice! We recently moved to where we are so this ordeal was in a new town.We know some people from
bowling and golf, but we've only known them for about 8 mos.My support network is all over the country.I can't "face to face" with anyone who's had this because they all live so far away so I can empathize with your feelings of isolation. I had a "woe is me" feeling for about 10 mins til my "survivor/warrior" mode kicked me in the backside and said "get over
yourself". I'm truly blessed and thankful for my conditions, as you said, there are so many others facing difficulties and I should quit whining. What annoys me are some looks people give me when they hear I have it--like I have cooties or something.One lady gave me
the "oh that is just the most awful thing"- I about went ballistic. I told her "Thank you very much for that vote of confidence, but I hate to inform you it's not a death sentence."
My SO Frank has been a real trooper through this, but I had to tell him a couple of times--
"Do not hover". I do everything I did before May 27th--I refuse to let "it" think "it"will ever get the upper hand. However--I am lonely.I really need to have "female bonding" but
that's not gonna be happening anytime soon. I don't feel guilty that I feel that way and you're right, it's not depression, it's this under current that's just far enough away I don't let it dominate. Thankfully this board lets me unload and although I can't get a
physical hug, I know the hugs are there--and that's an enormous boost.
I could have written most of what you did--except for the husband and not living near family/friends, but honestly, that doesn't seem to make a difference. People are still living their lives, dealing with their own sh*t, and I fully understand and expect them to do just that. But it doesn't make the far-too-quiet weekends any easier, nor do they have the capacity to understand just how the Dx hits us.
I am thoroughly grateful for: early diagnosis, being BRCA- (I have family members who are + and expected I would be too), having had an Oncotype Dx score of 11, and not having to do chemo--just radiation. But I'm still waiting for my "survivor/warrior" mode to kick back in and let me get over myself! Reading your comments certainly helped. It's why we're all here.0 -
Support groups provide sharing impossible with loved ones.
The recommendations to seek out breast cancer support groups are wise. Only those who have experienced what you have can really understand you. There is actually a site with information on how to find a breast cancer support group in your area:
"Several organizations have lists of support groups all over the country. They include:
* the National Cancer Institute's Cancer Information Service, 1-800-4-CANCER (1-800-422-6237)
* your local chapters of the American Cancer Society and the Susan G. Komen for the Cure
* local hospitals and breast cancer clinics
You'll also find an active online support community at the Breastcancer.org Discussion Boards."
http://www.breastcancer.org/questions/support.jsp
Houses of worship, public libraries, and community centers often host regular meetings for various support groups, you might check with your local ones to see if they have any for breast cancer.
Love, Courage, and Peace of Mind!
Rick0 -
I really get all this. Myterato said:Support groups provide sharing impossible with loved ones.
The recommendations to seek out breast cancer support groups are wise. Only those who have experienced what you have can really understand you. There is actually a site with information on how to find a breast cancer support group in your area:
"Several organizations have lists of support groups all over the country. They include:
* the National Cancer Institute's Cancer Information Service, 1-800-4-CANCER (1-800-422-6237)
* your local chapters of the American Cancer Society and the Susan G. Komen for the Cure
* local hospitals and breast cancer clinics
You'll also find an active online support community at the Breastcancer.org Discussion Boards."
http://www.breastcancer.org/questions/support.jsp
Houses of worship, public libraries, and community centers often host regular meetings for various support groups, you might check with your local ones to see if they have any for breast cancer.
Love, Courage, and Peace of Mind!
Rick
I really get all this. My feeling are a little different. I am at the end of my treatment and in the past year we lost a friends 6 year old to Cancer and just a month ago we lost my sons mother in law to cancer. I am feeling pretty bad, I live, they died. Feeling guilty almost. Not real sure what I am feeling, hard to explain.0 -
radiationCurlz said:Thanks for posting that
I could have written most of what you did--except for the husband and not living near family/friends, but honestly, that doesn't seem to make a difference. People are still living their lives, dealing with their own sh*t, and I fully understand and expect them to do just that. But it doesn't make the far-too-quiet weekends any easier, nor do they have the capacity to understand just how the Dx hits us.
I am thoroughly grateful for: early diagnosis, being BRCA- (I have family members who are + and expected I would be too), having had an Oncotype Dx score of 11, and not having to do chemo--just radiation. But I'm still waiting for my "survivor/warrior" mode to kick back in and let me get over myself! Reading your comments certainly helped. It's why we're all here.
I'm ok. I just had radiation. I guess my family, friends, and work didn't need to help or support me because I just had radiation. Guess you need to have chemo and loose your hair or look sick some other way to be taken seriously.
I like what you're saying about "survivor/warrior" mode. I need mine to kick back in and when the fatigue allows me to, get out there and get on with living. I, too, suffer from far-too-quiet weekends. Yep, I agree, either they just don't get it or they don't want to get it. I try hard not to be bitter and angry with them, but somedays I just get pissed. I'm on anti-depressants and seeing a therapist. I am a teacher and have to go back to work soon. I am still trying to figure out how to be a co-worker with the people to whom I was invisible to. Ideas?
I love your Chihully picture. I saw his work in Grand Rapids, MI. Where did you see it?
Thanks for letting me vent,
Betsy0 -
hi have breast cancer was
hi have breast cancer was diagionized 5 months ago. i had the cancer taken out it didnt involve any lyph nods i have had 4 chemos out of 8 im on a study going in this friday for my 5th treatment feel very alone have family in the area they all have there own lives and get to a point they dont want to hear you moaning looked into support groups they have two in the area they alway get canceled not enough people going to them.i wish i could meet someone in fort myers cape coral florida area just to be a friend with and do things with and talk our way through this cancer journey its hard to talk to people that havent gone through this journey. anyone living in sw florida need a friend lonely janet 46 years old0 -
Wish I did5209 said:hi have breast cancer was
hi have breast cancer was diagionized 5 months ago. i had the cancer taken out it didnt involve any lyph nods i have had 4 chemos out of 8 im on a study going in this friday for my 5th treatment feel very alone have family in the area they all have there own lives and get to a point they dont want to hear you moaning looked into support groups they have two in the area they alway get canceled not enough people going to them.i wish i could meet someone in fort myers cape coral florida area just to be a friend with and do things with and talk our way through this cancer journey its hard to talk to people that havent gone through this journey. anyone living in sw florida need a friend lonely janet 46 years old
Janet, I live in Michigan and there is not much in the way of support groups where we like. We are going to go to the Gilda Club it is a hour away . I feel the same way. But it is my husband who is fighting this battle. We don't have much of a family , what we do have they to have lifes that don't involved us. So we are on our own too.
You need to chat Or just email some one I will always anser.
Jennie0 -
ChihulyBetsy13 said:radiation
I'm ok. I just had radiation. I guess my family, friends, and work didn't need to help or support me because I just had radiation. Guess you need to have chemo and loose your hair or look sick some other way to be taken seriously.
I like what you're saying about "survivor/warrior" mode. I need mine to kick back in and when the fatigue allows me to, get out there and get on with living. I, too, suffer from far-too-quiet weekends. Yep, I agree, either they just don't get it or they don't want to get it. I try hard not to be bitter and angry with them, but somedays I just get pissed. I'm on anti-depressants and seeing a therapist. I am a teacher and have to go back to work soon. I am still trying to figure out how to be a co-worker with the people to whom I was invisible to. Ideas?
I love your Chihully picture. I saw his work in Grand Rapids, MI. Where did you see it?
Thanks for letting me vent,
Betsy
And I love that you recognize it, Betsy! I saw the installation at the NY Botanical Gardens a few years ago and just loooooooved it. I've since been to Las Vegas and saw his beautiful flowers in the lobby of the Bellagio + the pieces in the small shop there. The sculpture in that photo is called The Sun--how can I not smile when I see that?!? Glad you enjoyed it too!
Re: your co-workers, I can relate...but in my case, my co-workers have been great, but my boss(es)? Notsomuch. I've taken the "I'm just here for the paycheck/insurance" attitude and am very definitely going to look for a new job once I'm feeling like ME again--which is sloooowly starting to happen. Hopefully you enjoy teaching and the kids will be your inspiration to start feeling good! Your co-workers don't have to be your best pals, and in some cases, I think it's better if they're not, because you can keep your life/work a bit separated. I've never been great at that until this job, and despite being able to talk about my Dx, I realize that I'm doing it for ME--not for them. I'm comfortable talking about it and think it's important to do so, but that works for me. Good luck next week!0 -
online support groupsterato said:Support groups provide sharing impossible with loved ones.
The recommendations to seek out breast cancer support groups are wise. Only those who have experienced what you have can really understand you. There is actually a site with information on how to find a breast cancer support group in your area:
"Several organizations have lists of support groups all over the country. They include:
* the National Cancer Institute's Cancer Information Service, 1-800-4-CANCER (1-800-422-6237)
* your local chapters of the American Cancer Society and the Susan G. Komen for the Cure
* local hospitals and breast cancer clinics
You'll also find an active online support community at the Breastcancer.org Discussion Boards."
http://www.breastcancer.org/questions/support.jsp
Houses of worship, public libraries, and community centers often host regular meetings for various support groups, you might check with your local ones to see if they have any for breast cancer.
Love, Courage, and Peace of Mind!
Rick
have saved my life. I, also, live in Southwest Michigan. The closest support group is a 45 minute drive from where I live. With the fatigue I am experiencing, there is no way I can do this. Believe me, I have checked and checked and checked again. There is one in Paw Paw (45 min.), Plainwell (45 min.), Marshall (45-50 min.)
Am I starting my own group? No, my therapist is starting one. I do not have the energy. I have to go back to work on Monday, I'm a teacher, and am scared to death that I won't have the energy to make it through the day. This is my focus right now.
I have been in touch with Zinniemae and we will be communicating by phone and e-mail (hopefully!) until I am physically less fatigued. Remember what it was like carrying around that 200 lb. lead weight all the time? At least it's down from the 250 lbs. I was struggling with.
I contacted my local American Cancer Society Reach for Recovery program and they had a woman with stage 2 cancer call me. She couldn't answer my questions and it was very frustrating for both of us. I also called Susan G. Komen and ended up in tears. Needless to say, it was very frustrating. Local hospitals and the local cancer center have nothing.
Thank goodness I have found a wonderful therapist who is helping me through this and starting a support group. This board is my lifeline...
Thank you for being there!
Betsy0
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