cancer and feeling isolated
I have a loving, supportive partner and I feel so lucky, but with family and friends, I am having a tough time.
Right now I am dealing with post chemo neuropathy, my hair is gone, my toenails are falling off, I have thrush, I'm aching and tired... I come online and I see that many women are suffering from the cancer treatments, I am not alone in this.
But I don't know how to handle comments about "not dwelling" on cancer, or "I thought you were done with chemo", or "get on with your life".
It forces me to walk a stressful line between never talking about myself (which makes dismissing cancer easier) and discussing my disease (which seems to make everyone else uncomfortable). Lose-lose.
There is an expectation that I should be stoic, that all cancer patients should be stoic, heroic even- the man lost his testicles but won the Tour De France, what are YOU complaining about?
I feel so isolated and oh I'm tired.
Is anyone else feeling this way? I hope not.
Thanks for letting me let it out.
Comments
-
Em H that is why coming to
Em H that is why coming to these boards is very helpful. nO ONE understands this walk unless they have walked it and it isnt as easy as an outsider may think it is. This is not gall bladder surgery, you get the surgery and then you mend. Cancer treatment is a series of treatments and takes it's toll on our bodies, minds and energy levels. Vent here because we hear you and do understand. I did not discuss my cancer or my treatment with people who did not understand because I found their comments upsetting and frustrating. You just want to say, yeah lets see how quickly you get over it if you had to go thru what I am going thru. People for lack of knowledge do NOT understand and say the most ignorant offensive things to us.0 -
Well, i'm almost 6 months
Well, i'm almost 6 months post chemo. My hair & boobs are back, but im still tired all the time. I ache all over. I cant keep up with my kids. My nails are STILL randomly breaking off, and my eyelashes are thinning out again. I feel alot of your pains. I SO agree with the fact that if you're not talking about yourself you don't have to talk about the cancer. I do the same thing. I have my good days & my bad days. I dealt with everything much better mentally when I was in treatment. Once i finished it's like i let my mental defenses down & i'm trying to get through day by day.
*hugs*
Heather0 -
OH MY GOODNESS. You are so
OH MY GOODNESS. You are so not alone feeling like this. I just finished with all my chemo and radiation in Dec. March 4th was the one year mark of being diagnosed. My friends and family would say your all done you can be normal again. I cried for 3 days. I don't know why. I think everything I went through just came crashing down on me. It is hard to be strong all the time. I don't think I will ever be normal again. I am still sooo very tired all the time, can't sleep at night and have hot flashes all the time. Day and night. I am only 45. Find a support group in your area. Other BC survivors understand and never get tired of you talking about it. People who haven't had cancer don't understand what you are going through and will continue to go through. If anything you have your support group right here.0 -
EmH,
Let it out!! This is
EmH,
Let it out!! This is truly the place to vent with those who 'get it'. I also have a wonderfully supportive husband and family, but when I mention the tremendous pain I have in my joints, or the fatigue, they compare it to being tired or the normal aging process. I have tried to explain that it is 'different', but they don't understand. I guess I wouldn't have understood either, but it is not the same.
Know that here we do 'get it' and know the difference between being tired and having chemo fatigue, how hard it is to keep a positive attitude when you feel like ......well, you know what, not being the media cancer hero, etc, etc, etc. Say what you want to when you want to and understand others who have not experienced what you are experiencing will never quite 'get it'. That's okay. Don't worry that you will be failing someone or something by not 'getting on with your life'. Your life has changed and there is no point at which you are 'over' cancer. We all struggle with our 'new normal' and it takes a heck of a long time to get used to it.
Best wishes and sympatico.......
Chickadee0 -
Hey natly15!natly15 said:Em H that is why coming to
Em H that is why coming to these boards is very helpful. nO ONE understands this walk unless they have walked it and it isnt as easy as an outsider may think it is. This is not gall bladder surgery, you get the surgery and then you mend. Cancer treatment is a series of treatments and takes it's toll on our bodies, minds and energy levels. Vent here because we hear you and do understand. I did not discuss my cancer or my treatment with people who did not understand because I found their comments upsetting and frustrating. You just want to say, yeah lets see how quickly you get over it if you had to go thru what I am going thru. People for lack of knowledge do NOT understand and say the most ignorant offensive things to us.
Thank you so
Hey natly15!
Thank you so much for the reply. Thank you thank you. Yes, that is exactly how I feel!
I get angry at being minimized. Everything is so different now, I won't ever be the same. But I believe I am tough. I know I am inside.
Thank you for hearing me
0 -
Wow. What a great place.Chickadee1955 said:EmH,
Let it out!! This is
EmH,
Let it out!! This is truly the place to vent with those who 'get it'. I also have a wonderfully supportive husband and family, but when I mention the tremendous pain I have in my joints, or the fatigue, they compare it to being tired or the normal aging process. I have tried to explain that it is 'different', but they don't understand. I guess I wouldn't have understood either, but it is not the same.
Know that here we do 'get it' and know the difference between being tired and having chemo fatigue, how hard it is to keep a positive attitude when you feel like ......well, you know what, not being the media cancer hero, etc, etc, etc. Say what you want to when you want to and understand others who have not experienced what you are experiencing will never quite 'get it'. That's okay. Don't worry that you will be failing someone or something by not 'getting on with your life'. Your life has changed and there is no point at which you are 'over' cancer. We all struggle with our 'new normal' and it takes a heck of a long time to get used to it.
Best wishes and sympatico.......
Chickadee
Wow. What a great place. Thank you all. My heart just breaks for all of us.
But I am relieved that I am not alone!
(Please excuse how I interrupted my own thread up above. I'm new to posting on a forum, so I'll have to learn how it goes.)0 -
I feel all aloneem h said:Wow. What a great place.
Wow. What a great place. Thank you all. My heart just breaks for all of us.
But I am relieved that I am not alone!
(Please excuse how I interrupted my own thread up above. I'm new to posting on a forum, so I'll have to learn how it goes.)
I don't try anymore to talk to others. I feel what's the point. They don't want to hear it or they can't do anything about it anyways. I have been so quiet, and withdrawn for months.
Before bc I thought I had a good marriage, during the treatments my husband disconnected from me emotionally. He simply wasn't there for me. I would have never thought he would have treated me like he did. He is very distant from me. He is the one that has changed, for the worse, not me.
It makes me sad.0 -
Em-are you by chance onem h said:Wow. What a great place.
Wow. What a great place. Thank you all. My heart just breaks for all of us.
But I am relieved that I am not alone!
(Please excuse how I interrupted my own thread up above. I'm new to posting on a forum, so I'll have to learn how it goes.)
Em-are you by chance on facebook? if you are, please look me up & add me -im under Heather Kaylor Grontkowski. Although I try to check in on here every other day or so, im on there ALL the time, lol!
*hugs*
Heather
ps -no, you are not alone!!0 -
Hey Heather,Heatherbelle said:Em-are you by chance on
Em-are you by chance on facebook? if you are, please look me up & add me -im under Heather Kaylor Grontkowski. Although I try to check in on here every other day or so, im on there ALL the time, lol!
*hugs*
Heather
ps -no, you are not alone!!
No, I'm not on
Hey Heather,
No, I'm not on Facebook. I'm not very savvy about the internet, I am actually using a borrowed computer to post here. But I will go to Facebook and have a look around! Thank you for the invite 0 -
Dear Em h,
Hear it from
Dear Em h,
Hear it from another one, you are definately not alone.
I have stage iv, and have been told to 'buck up' when I said I was too tired or sore to do something. A sister who thinks I am exhausted because I am not doing enuf. It is inactivity and depression that is making me tired can't be weekly chemo or low blood counts.
After the chemo stops, it takes a while to find your way, and how long is different with each one of us! I learned not to expect others to understand, unless they have been there.
Looks like you have found your new place to come to when all of this gets you down. This is a great group of supportive sisters, and a few brothers from time to time, and we really do 'get it'. There are so many members of this board that when you have a question or something isn't making sense, someone knows where to refer you or can tell their experience.
You are not alone
~Carol0 -
Carol,camul said:Dear Em h,
Hear it from
Dear Em h,
Hear it from another one, you are definately not alone.
I have stage iv, and have been told to 'buck up' when I said I was too tired or sore to do something. A sister who thinks I am exhausted because I am not doing enuf. It is inactivity and depression that is making me tired can't be weekly chemo or low blood counts.
After the chemo stops, it takes a while to find your way, and how long is different with each one of us! I learned not to expect others to understand, unless they have been there.
Looks like you have found your new place to come to when all of this gets you down. This is a great group of supportive sisters, and a few brothers from time to time, and we really do 'get it'. There are so many members of this board that when you have a question or something isn't making sense, someone knows where to refer you or can tell their experience.
You are not alone
~Carol
Thank you. Yes, this
Carol,
Thank you. Yes, this place is making me feel sane for the first time in a long time. It is my new place 0 -
Not Alone
I guess I can see I'm not alone, but I'm still up, it's 1:45AM I cant sleep, worry about everyone else, but can not talk to my family about what I'm feeling, because they look at me and I look the same.In two weeks I'm going to start cemo.The Dr. said 4 rounds, then 6 weeks of radiation,so much inside, and the people I love tell me just don't dwell on it and you will be fine. sadness I'm suppose to fight the fight,so hard to do.This is my first post
such strong wonderful women you all are .Thanks for letting me vent a bit0 -
I too walk that thin line
between feeling isolated and feeling like I drag everyone down when
I open up. I finally came to the conclusion that most people can't
handle it. And I refuse to sugar coat for them. So I don't talk to them
about it. I have one friend who gives me all the support I could possibly
need and that is what keeps me going. That and this board.
I went out tonight with another survivor I had met months ago at
presentation for natural healing. We became fast friends. And at the
restaurant we had chosen, they had live music... so much fun. I asked
her to dance with me, she would not budge at first. And I knew what
was going on in that little head of hers, she was not feeling very sexy.
So I leaned over and whispered in her ear, don't waste this moment,
we have been through enough let's celebrate life! She got up and we
danced the night away!! We both agreed - surviving cancer is like
an awakening! My friend even went as far as to say she's happier now
then she has ever been before!
WHAT a night it has been kindred spirits!
Huge hugs,
Ayse0 -
I have some friendsaysemari said:I too walk that thin line
between feeling isolated and feeling like I drag everyone down when
I open up. I finally came to the conclusion that most people can't
handle it. And I refuse to sugar coat for them. So I don't talk to them
about it. I have one friend who gives me all the support I could possibly
need and that is what keeps me going. That and this board.
I went out tonight with another survivor I had met months ago at
presentation for natural healing. We became fast friends. And at the
restaurant we had chosen, they had live music... so much fun. I asked
her to dance with me, she would not budge at first. And I knew what
was going on in that little head of hers, she was not feeling very sexy.
So I leaned over and whispered in her ear, don't waste this moment,
we have been through enough let's celebrate life! She got up and we
danced the night away!! We both agreed - surviving cancer is like
an awakening! My friend even went as far as to say she's happier now
then she has ever been before!
WHAT a night it has been kindred spirits!
Huge hugs,
Ayse
I have some friends who have been diagnosed and lived for years.We talked at first about my dx but now it has calmed down.Just if I need to have tests I talk to them about that. Both were diagnosed with a invasive cancer.One had a fast growing cancer and the other had some node involvement.
Those who are what I would call "People I know" I told them about my bc.That was about it.Of course they felt bad and think I am doomed.How sorry they are. But they are people I just know and they haven't been through it and some don't know anyone who has. Those are the ones I just told and haven't mentioned bc since. But they are also the ones who think people with cancer don't live long. I gave up some community service work.Of course I am sick(to them) but I needed to quit after 10 years.Lots of questions from them and I get tired of that.Now I'm not around them and can move on and do other things I love.I loved what I did but now I have other projects to work on and one is ME.
So I do feel isolated BUT all those who have no idea about a cancer dx MAY someday be faced with it themselves.They are younger( but young people get it) and they are healthy.Healthy people get it.They have no idea it can strike any age.After over 40 years of benign tumors and no estrogen(hysteroctomy) I felt I wouldn't get it.Then after my dx I read that 60-80 years old is a risk for developing bc.The age thing.People have no idea it CAN happen to them.To anyone.
That is why we have this board.To help one another with our cancer dx.So many survivors have no one they can turn to and relate to.
Lynn Smith0 -
Yes, Thank God for thisLynn Smith said:I have some friends
I have some friends who have been diagnosed and lived for years.We talked at first about my dx but now it has calmed down.Just if I need to have tests I talk to them about that. Both were diagnosed with a invasive cancer.One had a fast growing cancer and the other had some node involvement.
Those who are what I would call "People I know" I told them about my bc.That was about it.Of course they felt bad and think I am doomed.How sorry they are. But they are people I just know and they haven't been through it and some don't know anyone who has. Those are the ones I just told and haven't mentioned bc since. But they are also the ones who think people with cancer don't live long. I gave up some community service work.Of course I am sick(to them) but I needed to quit after 10 years.Lots of questions from them and I get tired of that.Now I'm not around them and can move on and do other things I love.I loved what I did but now I have other projects to work on and one is ME.
So I do feel isolated BUT all those who have no idea about a cancer dx MAY someday be faced with it themselves.They are younger( but young people get it) and they are healthy.Healthy people get it.They have no idea it can strike any age.After over 40 years of benign tumors and no estrogen(hysteroctomy) I felt I wouldn't get it.Then after my dx I read that 60-80 years old is a risk for developing bc.The age thing.People have no idea it CAN happen to them.To anyone.
That is why we have this board.To help one another with our cancer dx.So many survivors have no one they can turn to and relate to.
Lynn Smith
Yes, Thank God for this board.0 -
Oh, Em--I so understand what you're feelingLighthouse_7 said:Yes, Thank God for this
Yes, Thank God for this board.
I'm 10 months post chemo and 8 months post rads--I still have times of feeling isolated and misunderstood, pain, fatigue and sadness. Natly's post said it all--unless you've walked this walk--you just don't get it. This is so not gall bladder surgery!
Come here anytime you need to vent--or just to talk about what you're feeling. We get it here and you are welcome anytime--no judgement from us.
Hope you have a better day today, sister.
Hugs, Renee0 -
Oh Ayse you really did someaysemari said:I too walk that thin line
between feeling isolated and feeling like I drag everyone down when
I open up. I finally came to the conclusion that most people can't
handle it. And I refuse to sugar coat for them. So I don't talk to them
about it. I have one friend who gives me all the support I could possibly
need and that is what keeps me going. That and this board.
I went out tonight with another survivor I had met months ago at
presentation for natural healing. We became fast friends. And at the
restaurant we had chosen, they had live music... so much fun. I asked
her to dance with me, she would not budge at first. And I knew what
was going on in that little head of hers, she was not feeling very sexy.
So I leaned over and whispered in her ear, don't waste this moment,
we have been through enough let's celebrate life! She got up and we
danced the night away!! We both agreed - surviving cancer is like
an awakening! My friend even went as far as to say she's happier now
then she has ever been before!
WHAT a night it has been kindred spirits!
Huge hugs,
Ayse
Oh Ayse you really did some dancing with NED. I love to dance and it made me feel so happy to hear you are celebrating life. We do have our ups and our downs, but I pray as we heal and progress that we have many more up days doing what you did with your friend, celebrating life.
I want to say that I'm "Feeling Up Now" and that to me spells and means F U N!!!0 -
Hi
I am sorry you are getting these reactions from people. It's really annoying and upsetting, but here's what I think. Before I was diagnosed I believed we must keep those people who care for us around us. And those who don't bring positivity into our lives, to exclude. More than ever, I think we should continue to do this, especially now. We need positive energy, no stress, peace, tranquility, love, support, kindness, nature, friends, families, so much!!! Now more than ever we need to choose our environment and choose our battles. Sometimes we may have no choice - like we may be stuck with a family member who annoys us - but we have to try our very best to put ourselves first. I personally talk to God and that helps me. It's hard to let go of some comments because we are humans, BUT we have to love ourselves and know we are not alone. God loves us very much too.
It has helped me to keep a limited number of people around me for support, because as many as these sisters have said, they do NOT get it unless they know someone who has been here (and that's not always!) or they have.
I hope things get easier for you. I find myself getting help from nature - walks, animals, trees, flowers, plants...they are always there for you.
Good luck with everything and know this board is so supportive. And we understand.
Love0 -
I get it...
I am now 2 weeks after all treatment (triple negative breast cancer--Stage 1) and I sometimes want to just shout at people that it doesn't matter that I look healthy, I still need time for my body to heal from surgeries, chemo and rads!! My hair is growing back a pretty grey (surprise after dying my hair for 40 years) and it is very short--maybe 1 inch and while I appreciate people telling me how good it looks, it really isn't my choice and I'm sometimes embarrassed at how severe my hair still looks. Yes, I look healthy but I've gained so much weight that I feel bloated and uncomfortable. People expect me to be back to normal whatever that is!
During treatment, I had to make my sister promise to not try to cheer me up...sometimes I wanted to just tell her what was happening and not listen to how so-and-so was treated and what happened and how everything will be ok. NO--it will never be OK the same way again. But I do know it will get better, I just don't want other people who haven't walked this walk to say it.
My husband of only 4 months before dx is truly wonderful. He's been "stoically supportive", hasn't said much during treatment. Now though it seems that if I complain about an ache or feeling, he has it too--and worse. So I try not to complain.
On top of just wanting to heal, I'll be losing my job (have posted about this earlier) and will need to job hunt (at 58 in this economy it doesn't seem like it will be easy). I know that I will have the opportunity to have a better job, with people who are easier to work with and that this job loss is a good thing, but still...haven't I been through enough? It does seem to me that the timing may allow me a month or two to recoupperate and thankfully, my husband's insurance open enrollment is May so I can be added to his group policy, but I'm not sure that my husband would understand if I took a few months off, collect unemployment and pack up to move into his house.
Opse...this has become my own rant, but anyway, I think that everyone on this board gets how you feel and that is what makes it a wonderful place to share joy, heartache, pain and anger without any judgment.
Hugs,
JoAnn0 -
No~ you aren't alone!
I am going to re-post something I wrote eons ago, and have been asked to bump up now and again for just the reasons you listed~ we oftentimes DO feel isolated aand alone~ even if we have loving and supportive life partners. I hope that my Kindred Spirits here on the boards will forgive me for noticing the post yet again! So....em h~ if you see a post entitled "WELCOME TO HOWARTS" ~this one's for you! Hope it helps because, no, you are not alone by any means. We walk this path together...
Hugs,
Chen♥0
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