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Lonelier after each treatment

kdw1008
Posts: 7
Joined: Aug 2010

I was diagnosed with Stage I ER/PR neg, HER2 pos breast cancer in April 2010. Had a double mastectomy with the initial reconstruction surgery in late May and started chemo in late June. I am getting 6 rounds of Taxotere/Carboplatin every 3 weeks and Herceptin weekly. After chemo I will receive Herceptin every 3 weeks until next June. Each treatment seems to be getting progressively worse - more nausea, more intestinal issues, etc.

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?

jnl's picture
jnl
Posts: 3873
Joined: May 2009

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,

Leeza

24242
Posts: 1417
Joined: Mar 2001

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.
Tara

jackiejhm's picture
jackiejhm
Posts: 169
Joined: Feb 2010

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 Jackie

starseed's picture
starseed
Posts: 62
Joined: May 2010

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.

patti anne's picture
patti anne
Posts: 101
Joined: Oct 2009

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.

meena1's picture
meena1
Posts: 1005
Joined: Oct 2008

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.

kdw1008
Posts: 7
Joined: Aug 2010

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!

jackiejhm's picture
jackiejhm
Posts: 169
Joined: Feb 2010

That sounds so great! We want pictures! Hang in there-xoxo, Jackie

Curlz's picture
Curlz
Posts: 42
Joined: Aug 2010

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.

Betsy13
Posts: 186
Joined: May 2010

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

Curlz's picture
Curlz
Posts: 42
Joined: Aug 2010

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!

rose_hadds's picture
rose_hadds
Posts: 34
Joined: Jul 2010

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.

Leanne

Danuta
Posts: 1
Joined: Aug 2010

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, Danuta

Betsy13
Posts: 186
Joined: May 2010

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".
Betsy

terato's picture
terato
Posts: 384
Joined: Apr 2002

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

Kat11's picture
Kat11
Posts: 1931
Joined: May 2009

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.

Betsy13
Posts: 186
Joined: May 2010

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!
Betsy

zinniemay's picture
zinniemay
Posts: 534
Joined: Mar 2009

Betsy, I just want you to know I am thinking of you. The hardest part of a question is the part that is not asked. I was told this once when I was young by my favorite teacher. She said the only dumb question is the one that is not asked. Don't be afraid to ask if you wonder about something chances are others do to but are afraid to ask. She was a wise lady. I may not be able to answer some questions for you but I can try to find some one who can. NO one should ever have to feel alone or afraide .
I do not have cancer my husband does. I learn for this site everyday . I am no stranger to sugery or the disfigurement it leaves behind. Or the depression.
ANyway I am more than happy to chat on here or by phone with any one who wants to .
I am going This week and check on a place in Paw Paw and see if they know a place or places closer to you.
If you need I sent my # you can call me and if you need to just cry, I will listen I will try to help you so you know that you are not alone and you have a right to your feeling.

Jennie

5209
Posts: 1
Joined: Aug 2010

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

zinniemay's picture
zinniemay
Posts: 534
Joined: Mar 2009

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.
Jennie

Betsy13
Posts: 186
Joined: May 2010

Hi Janet~

I am SO sorry about how lonely you are feeling. I know the feeling very well.

I read on the breast cancer board about some women who live in SW Florida. My suggestion would be to write in the Subject: line...SW Florida ladies, any one near me?...and go from there. That's how Zinniemae and I found each other. She is looking for support in SW Michigan and that's where I live. I plan on calling her later today.

As the good Lord says, "Seek and ye shall find." I'll be praying for you that one or more ladies answer your post on the breast cancer board (see, already thinking positive!)and you can get the emotional/physical support you need.

There is nothing worse than being lonely and alone...

Hugs to you,
Betsy

Betsy13
Posts: 186
Joined: May 2010

How are you? You haven't posted in awhile. Are you feeling better? less depressed?

Please, let us know.

Praying for you,
Betsy

kdw1008
Posts: 7
Joined: Aug 2010

Thank you so much for asking about me! Just had #4 of 6 chemo yesterday and feeling horrible today - am staying up til midnight so I can take my anti-nausea pill before trying to get to sleep. I called about a support group and will be going to my first one in 2 weeks. They only have them once a month. Looking forward to it!!! I realize I just have to get through that first week after treatment - after that it's ok because I can get out and at least feel somewhat like a normal person. I still get pretty down sometimes but I just keep counting the days til this horrible chemo is over. My last one will be on my 50th birthday!! Am trying to think of that as the best gift ever!!! Hopefully will have my surgery to swap expanders for implants by thanksgiving. Have to remind myself to be thankful every day that I found this early. I got a card from a friend the other day that says "chemo sucks!!" and inside it says" it sucks the cancer right out of you!". I keep that one on my nightstand!!!
Thank you all so much for all the replies. It really helps to know that others are going through this and that complete but wonderful strangers on this board care so much for each other.
Kdw

supermanhadley's picture
supermanhadley
Posts: 13
Joined: Aug 2010

Hey kdw1008-

I know exactly how you feel. I have been fighting cancer for almost 4 years and just embarked on a new relationship a little over a year ago. She is wonderful, but I get so frustrated to the point I get angry and tearful because I don't feel like I am understood. So much time is spent worrying on the cancer itself I feel ignored and let down. And my anger and emotions over take me and then I spend my time apologizing and I feel I appear to her as an emotional mess.

I too have a good prognosis and sometimes she wonders why I am not more enthusiastic, but I always have this fear. This is exactly what I have been needing to talk to somebody about.

Thank you for sharing.

Curlz's picture
Curlz
Posts: 42
Joined: Aug 2010

Superman-do you mean that your partner spends a lot of time worrying about the cancer, or that you do? If you're willing to share, I'm curious. I'm only 6 mos since Dx, but I'm rather obsessed with how/when/HOW (did I mention HOW?) I'm going to get in to a new relationship. I realize that everyone doesn't handle this stuff well and that once I meet a man who does I'll know it, but I'd love to hear a little more about this.

My one big complaint about support sites/groups is that nobody seems to be addressing this end of things too much--and for a single woman in her early 40s, it's a rather important topic!

Of course anyone else who wants to chime in should do so too... Thanks, all!

Betsy13
Posts: 186
Joined: May 2010

I have learned through my experience that no matter how much someone loves you and tries to understand, unless they have had cancer, they will never understand. My husband tries so hard to understand, but has finally accepted that some of the things I feel (the fear of will it come back, lonely, anger, disillusioned, unmet expectations) he will not understand because he has not faced death in the face and beat it.

We finally came to an agreement that he would not ask me how I am feeling. If I was not feeling good or having a bad day, I would tell him. This has forced me to really think about how I am feeling and not whine, yes, I said whine, about the little aches and pains. So when I really don't feel well, he listens and doesn't blow it off. It has really taken a lot of the stress and pressure off of my situation and we enjoy things again.

I have learned to vent on this site because the people here have been where we are; they understand; and offer great support and advice.

I hope you find peace and happiness. Somedays I wake and make a choice to be happy...

Take care,
Betsy

zinniemay's picture
zinniemay
Posts: 534
Joined: Mar 2009

Betsy, I emailed you but it came back

Betsy13
Posts: 186
Joined: May 2010

I sent you an e-mail earlier today. Did you get it?

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Hi kdw. What you are going through is called survivors guilt and it happens when a person comes through something that others did not. For me I have my spirituality and feel that there is a greater plan and that, for me anywho, explains alot of it - why one stays and another must go. For me it's all about accomplishing our mission here on this wild and crazy planet and when we do, we go Home.

One thing that has worked for many survivors is 'giving back'. Many survivors find that after they come through the treatments and so on they have this deep need to volunteer or share their experiences and I think that is part of their mission. What good is going through all of this with cancer and then not helping others through it with what you have learned, passing on vital bits of info and help in their new struggles or just volunteering with those in need outside of the cancer world. Struggle is struggle and if we can lighten someone else's load that is in turn very healing to ourselves as well.

You mentioned that you have no one to talk to about your issues with cancer but that's not true now, you have found this site. On it, as you might have already found you will find alot of like minded survivors who share your emotions and issues and in that you will immediately not feel alone any longer. Validation and sharing are two very important things to a survivor, as you are finding out, and many of those around us who haven't been touched by it personally can't be expected to totally understand.

Give yourself a break, don't beat yourself up and know that you are not whining or complaining, you are just going through the stages we all face at one time or another with this journey through cancer.

Blog anytime you want on this site, post more questions, reply to others and in so doing you will be giving back and will feel better for it and less guilty about your survival. Your survival serves a greater purpose than you or I know.

Blessings, Bluerose

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