Cancer is a lonely experience ...

HelenaJ

Cher07 - firstly may I say I Love your atavar!!!!  And yes you will find here lots of women felt that way, and some still do.  I haven't been through anything near what you have and are experiencing but I crashed and burned 6 months down the track from diagnosis but I am back on my feet, tottering sometimes but feel almost human again.  We call it a "new kind of normal".  Take a day at a time and know that you in good company and not alone.  Let your body rest and repair, you've been through so much.  Can I help with a hug ((((((((((((hug))))))))))))))))).

Helena

London-Virginia

ailenroc - I am grateful you made the original post.  You have eloquently expressed what I and loads of others feel too!

It so happens I am not having a good week this week, and there is much on this thread that is thought provoking, and of course, kindly.

Repeatedly all over this site, I read about how you need to learn to love each day, take it as it comes etc.  Personally, I was already living by that credo and genuinely have always been cheered by the minor things of life - sunsets, birds singing etc.   So, I had that one down pat.  And you know what, I don't feel any of it helps.  What I know is that I loathe going to the hospital, I am bored to distration with this entire thing, and really there is screw all I can do about it.  Personally, I am so not interested in new normals, or new this or new that.  For me, that is just total surrender.

If these things work well for another person then I am glad for them and that's fine; we are all individuals.

I wonder, is it at all possible for you to find a local group of people that you could meet up with sometimes?  It is great to come on here but maybe in your instance, a bit of physical interaction would be nourishing?  I can't see that it is good for you to be in a situation where you effectively feel you can't speak.

I am not as far along with things as you, but I have found it annoying that some people thing that a lump gets whipped out and hey - everything is just peachy.

Can we keep this thread going along do you think?

It is good to swop ideas and who knows, one of us might make another laugh!!!!

all best wishes for the future -

Makratz

Cher07, When I finished my tx last Nov, I thought I would be so relieved, but I wasn't.  I cried alot, worried, was so tired etc.  It wasn't fun!  9 months later, I do feel better.   I think the fatigue eases up, although I am still more tired than I ever was.  I have heard that rads can make you more tired about 3 weeks post rads.  It's the gift that keeps on giving!

I have also started taking B12 which is for energy and metabolism.  I do think it is helping.  Maybe you cuold try some or talk to your doctor.

Another thing that helped me was that I made myself get out and do things.  It was so strange to be thrown back into a 'cancer free' world, but I think we need to do it.  I did (and still do) come to these threads multiple times a day to talk to others who have gone through what I did.  It's helpful for me to know I am not alone.  My noncancer friends don't get it, although they mean well.

I hope you feel better soon.  Please talk to your doctor about getting help.  You are not alone! 

Gitane

allenroc, I've never seen so many people respond the way we have responded to the thread you have started.  You really opened up the gates with your observations.  I want to add my name to the list, too.  I can identify with most of what everyone is saying here.  It seems that we all are changed and challenged by this experience and that makes us sisters, we know others who have bc can understand.  Thank you for starting this.  It's a great thread.

cmharris59

I do not think it is possible for anyone to ever understand how we feel unless they have been through it themselves.  Breast cancer is unlike other cancers.  It is devastating. Not just because we are faced with our own mortality, most cancer patients feel that. It isn't because we have to go through the barbairc and primitive chemo treatments. A lot of other cancer patients have to deal with the debilitating side effects.

Cancer forces people to face their mortality, It forces people to deal with the dangerous side effects of chemo and the emotional drain that it generates. It forces people to endure invasive surgeries, sometimes multiple surgeries. It forces people to cope with the fatigue from radiation.  It makes us reconsider the quality of our lives and the meaning of our lives. 

But, as breast cancer patients, we have had to deal with an emotional tragedy that few will ever understand outside of the BC community. We have to deal with the new normal. We have to deal with the amputation, the mutilation, and the loss of a huge chunk of our femininity.  We have to deal with making a decision about losing something that makes us uniquely female and our lives.  No matter how self confident we were before cancer, it creates issues with our body image and our sex lives. It makes us question our views of ourselves regarding vanity and superficiality. We are not vane to want to look normal, the way we did before cancer. But we still question our decisions and our fears.

I cannot think of another cancer that is assocciated with such emotional trauma. We are alone.

HelenaJ

beautifully said cmharris59. 

cmharris59

Thank you.

kim40

cmharris59 - very well  put.  That is exactly how I feel about this whole journey.

sailorgirl1

So well put.  But, we are not alone - we have each other which is soooo important!!!  Never forget that.  We must reach out and lean on each other for emotional support.

Kathy

kawee

I thought I was the only one who felt this way.  My husband has been great, but my friends and my family don't get it at all.  They change the subject if I bring it up, If I'm tired and can't do something they think it's in my head.  When I start a new treatment they don't call to see how it went.  It seems like noone cares.  I am starting to feel resentment and I don't want to.  I really think if the shoe were on the other foot I would be there for them 24/7.  How do I not feel resentment?  This is just a bad day because I am fatigued today.  Somedays I'm teary all day.  It's such an emotional rollercoaster.  It's like your life is humming along then someone drops a bomb and your life falls apart.  Oh well, I'll probably be alot better tomorrow and will sing a whole different tune. 

Makratz

Kawee, hope you are feeling better.  You are new here so stay awhile nd get to know the people on these threads.  They're what saved me!  When no one else gets it, we do!!

lottie

I was diagnosed on 7/2, had mastectomy on my right breast on 7/27 and am now waiting for oncotyping to help me decide whether to have chemo or go without -- my oncologist recommends 4 cycles cytoxan and taxotere over 3 months. I think the loniless and depression just kicked in today. I'm sick of myself and I worry that others are sick of me too. I feel like I'm stuck waiting, constantly, for the next piece of news and I can totally understand why some of us feel isolated, permanently changed and unable to relate months, even years after treatment has ended. these forums have really made a HUGE difference for me. The women here are the most generous, smartest, and most compassionate I have ever encountered. I feel like I've lost a huge part of myself, and, it was a part I was just getting to know and to love. I'm over 50 and was just getting comfortable in my own skin, and with the choices I made and myself as a person, and now, this! And, alienroc, my motorcycle is just sitting in the driveway waiting for me. It drives me nuts.

Thanks and best of everything to all

Lottie

Makratz

Hugs to you Lottie!  My motorcycle (actually DH's) is in my garage.  You are in MA and so am I.....hmmmmm...maybe a goal is to meet up someday when you are healthier! We could go riding.  You will do it!   Hang in there.

checkum

I understand what you are saying.  I am just coming up on a year since my dx.  I had chemo 10/08 - 1/09, mastectomy 2/09 and am having what I hope is my last surgery for a while on Monday.  Ever since my hair has grown back and the mastectomy is behind me everyone treats me like I am "cured"... how I wish that were so.  I think that only those that walk in our shoes understand and are able to offer the support when we are just having one of those shit days...

I also find tremendous fun and a way to escape on these boards... with my sistah's that have kept my sanity in check in more ways than anyone could ever know.

 Yes, with the outside world, even with family, it is a lonely walk.  But there is good support here -

THANK GOD FOR THESE BOARDS AND THESE WOMEN!!!

Makratz

And thank God for people like Checkum!!!

melmedic06

what powerful messages you ladies are all sending- i am totally feeling the pain- aggravation- anger- frustration- depression- anxiety-panic - loneliness- loss- confusion and every other emotion under the sun- i too have been changed into a different person after my cancer diagnois (times two) i was always the strong and brave person that could handle anything and after my first diagnosis i continued to try to be that person for my family and friends but deep down i was such a wimp- obviously we all say why me and that turned into my mantra (not a healthy mantra!)- i got so tired of people looking at me with such on overwhelmingly sense of pity that i just kept acting more and more brave so that wouldn't give me "that" look that i came to resent so deeply- i worked all through my radiation and kept saying i was fine but i was totally falling apart - as i know we all do many times during this battle- when i went for my first mammo after my radiation was done i was such a wreck and one of my co-workers actually said "well isn't all of that cancer stuff behind you now?  OMG- i guess ignorance functions on many different levels :-(     when i was dx'd the second time less than a year later i did not tell very many people- i had my second lumpectomy and went back to work and snuck through radiation with the support of my boss because i could not go through explaining how incredibly P----ED  off i was this flippin cancer was back- i felt alienated- lonely- afraid- i so needed to talk to someone but no one "got" how depressed and scared i was- i quietly started my arimidex and as the s/e's continued to get worse and worse i really wanted to complain but no one wanted to listen- it was like being in a big empty never ending space of grief and anger and nothing helped- i will reach my 5 year mark in october and just had my labs drawn today (praying for good results) all of my friends encourage me to date but i am never going to feel like a woman again and my body is one hot mess- two lumpectomies that robbed me of so much breast tissue and left some not so pleasant scars plus the radiation sucked the life out of my nipples and any man in their right mind would run scared if he were to have to see those puppies so i continue to pretend that the cancer was just something i had to get through when actually it was a moment in time that took away anything normal and for the rest of my life i will wake up and say "i am a breast cancer patient"-keep the faith ladies

Jean09

Hi Ladies,

I can relate to what everyone is feeling.  This roller coaster ride of emotions is just to much to handle some days.  I worry about losing my job, my insurance and if I do, what the heck is going to happen?  I've worked so hard all my life to get ahead and now I have cancer.  Never in my dreams did I think I would end up like this.  And now I have a life sentence.  My brain is fried, I cant think straight anymore, I cant remember anything.  How am I suppose to go back out into the world and function like I did before cancer?  I cant, there is just no way - my mind and body has been put through the ringer. 

I lost my oldest son back in 2003, he was killed in a car accident.  Not a day has gone by that I dont think about him, I still miss him so much.  Since the cancer diagnosis, I have something else to think about every day for the rest of my life "cancer".  I think back to my life before these traumatic events and wonder if I'll ever be the same...and I can honestly say "no".  That girl is gone.  I dont think I'll ever feel truly happy again.  I feel guilty if I laugh or smile. I know the rest of my life is going to be filled with doctor vists, scans, tests...etc.  What joy  

It wouldnt be so bad if once you get through chemo and rads the doc says "you're cured" now get back to your normal life.  But that just doesn't happen and it sucks....I truly HATE this disease.

cmharris59

HI ladies,

It is so devastating to have to undergo all of the emotions that this disease brings out in us. I have a motorcycle, too. It is parked, and I know that I will never be able to ride it again. My neuropathy is so painful and debilitating that along with my loss of balance, I can't ever conceive of riding alone again. I hope that those of you with bikes can and will enjoy it like I did. 

I have lost my job due to this cancer and I am now struggling to pay my Cobra payments until Medicare takes over in Feb.  I wonder how the rest of my life will be. I am 50 and was dxed two years ago. I still have a number of surgeries ahead of me for recon. I know that when it is all finished, that I will feel like a freak no matter how good my PS is. Every morning, I wake up and the first thought after the pain subsides is "is this all there is to look forward to the rest of my life?". 

I live alone except for my cats. I never married and have no children. It really wasn't by choice, I just never found Mr Right. Now I suppose that is impossible too. I feel so alone and helpless. Everyone I know thinks that I should be OK now. I had to stop my chemo treatments early because of the permanent ses from them. As a result of that, I worry every day that my cancer will come back and they will be unable to treat it. 

My rad onc asks me at every follow-up visit if I am doing my self exams. I don't. Not anymore.  I refuse to find the next lump. Let someone else do that. I have enough worrying to do. 

One of the things that bothers me a lot occurs when I run into other women in my community that have had breast cancer. You will not see them here on these boards. They seem to have breezed through treatments. They never had to quit work; they never had the side effects that I suffer; they had a strong support system. I resent them. I hate it but I do. I don't want to resent them, but they make me angry. I was younger, healthier, and physically stronger than any of them. Yet, I am the one on disability now. What the F$%K?

My new normal is so unlike my old self that last Friday when I went out to dinner with a friend and I couldn't walk out of the restaurant without help from strangers, that I cried and cried. I started crying at the door, as I waited for my friend to bring the car around and I had to lean on a stranger for support. Then I cried all of the way home, telling my girl friend that "this isn't me!" . That has become my mantra. THIS ISN'T ME!

C

Makratz

Hugs C.  You have been through hell.  I can understand you feeling, as I'm sure so many others here can too.  Stay strong.  ((((((((((HUGS))))))))))))

Renata

This site is the only place where I find comfort and I'm not afraid of expressing my fears. I'm a year post diagnosis and in the middle of reconstruction for my mastectomy. I'm now certain that my life will never be same. Eventually family and friends get tired of listening about cancer related issues, they want life to be as it was before diagnosis. I want that too, but I can't because: my body is mutilated and I see it every day, when something hurts anywhere I'm afraid it's cancer, I can't do the things I did before because I'm tired all the time, tired and sad. I'm single too and have no children and I guess that's the way it's going to be, it's not what I expected of life at 39.

lottie

i am so sorry C, your statement "THIS ISN'T ME" really rings true. I'm so p*ssed off, and this is a new emotion. I was the happy, strong patient until this week and now I feel like crap. And, this is only week 3 or 4 since mastectomy, about 7 since DX. I guess this is the beginning of the roller coaster. Today for some reason, I had lots of pain. Yesterday too. My incision is infected and I feel ugly and mutiliated. The fact that I'l probably need chemo and my hair, which I've finally come to love -- thick and white as it is, will be gone adds to my sadness and then of course I feel guilty for being concerned about my appearance.

I'm thinking of all of you here and am grateful I can hop on these forums and let it fly if need be.

And, if not everyone is supportive or seems cavalier, or like a "cancer overachiever" , breezing through treatments and making light of things, perhaps that's their way of dealing, ... it isn't easy for anyone. 

pomegranate

My experiences have been like many of those on this thread. I still find it hard to answer a colleague that I run into here or there when asked, "So, how is your health?" My answer depends on who is asking. If I know you well, I will tell them how I have really been feeling. If I don't know you well, I will tell you I have good days and bad, that today is a good day. That seems to satisfy most.

My family has been nothing but supportive and caring. My daughter admonishes me when I pick up my granddaughter to hug her (at 36 lbs). See, I have lymphedema. That is bc's gift to me!

My husband always offers to drive me whereever I want to go, cooks dinner when I'm too tired, and understands when I say at 11 am I need to go lay down.

I have done all of the following to help heal:  water aerobics in warm water pool 5 days a week and deep water aerobics 1 day a week; walk 5-10 miles a week; use a compression pump for my LE; saw a psychotherapist for 2 years; wrote over 200 pages of my experience w/bc and LE; spend time with my 82 year old mother at least twice a week; spend 2 mornings a week doing volunteer work at our local Lymphedema Clinic; coordinate and attend a LE support group once a month; participate in yearly walk to raise money for our LE clinic and patients' LE garments (for those w/out insurance or financial means; joined a small quilt group (3 of us are breast cancer survivors); made 5 quilts for my grandchildren in the past 2 years; work in the garden all spring, summer, and fall, at least 3 times a week; play with my grandchildren; and make myself available to those women in my community who are newly diagnosed with LE as a result of breast cancer txs--to listen to them and offer resources in our area--all without asking for any payment to me.

It has been a long hard climb, but I feel like every year is getting better and better. This is my 4th year since diagnosis, and with the physical effects behind me (except for the LE), I am now working on the spiritual and emotional healing in front of me. Because of my LE I was forced to retire. I am finding that retirement can be almost as busy as working could be. I still have goals that I have set for myself. I still have 4 or 5 more quilts designed in my head so I know I will stay busy. When the quiet time comes I sit on our deck and listen to the fountain and the noises nature makes as I stare at the beautiful forest of redwoods and ferns that surround us.

To many I probably appear to be one who breezed through treatments and appearing to be quickly recovered from my "ordeal." Many will never know the tears I have cried; or the nights I have been curled in a fetal position in utter pain without relief. Many will never know the machinations I go through each day--pumps, garments, medicine--to deal with my LE. They don't know I go in to the hospital for neck injections twice a year (once a week for 4 weeks) to stave off the burning pain that my pain meds don't touch.

Thanks for allowing me to share my experience. And most blessedly, thank you for sharing yours with me. It's good not to feel so alone.

Pomegranate

cmharris59

Hi ladies and thanks for sharing your experiences.

Pomegranate,

I don't know if I would have classified you as one of those that has breezed through it. My experience here in town, is that these ladies are not interested in helping another woman with breast cancer, because they had no problem.  When I was first dx'ed, some of my coworkers and acquaintances put me in contact with women that had breast cancer. Most did not want to talk me about it except to say that I would get through it without any problem.  Some told me that I was overreacting. Only one actually seemed to be concerned and understanding.

C

leaf

I wish more people would understand that going through cancer (or some other life changing experience) is different for everyone.   Not every soldier who goes off to war gets PTSD.  It depends on their previous experiences, their personality, etc.  Our bodies and minds are different.

Each person's experience must be honored.

As someone's wise byline goes, We need to be kind to everyone, because we really don't know what they are going through. I'm glad we have this place to share our experiences so we don't have to feel quite so alone.

charmd

Ladies, I am so with you.

I have been blessed with a strong support system, however, I am getting the vibe that no one "really" wants to hear how I am doing these days.  My dx was in Jan, then chemo through May, two surgeries in June, and started Rads this month.  Everyone seems to think that "the worst is over" or "they cut the cancer out" so I should be fine now.  My hubby has been a blessing through the chemo and surgery, but just doesn't understand the se of the rads, or the cumulative exhaustion of the entire experience.  I love him, but he just doesn't get it.  However, the people who piss me off the most are the ones who say "you should be grateful to be alive.  I just want to bitch slap them.  I AM GRATEFUL TO BE ALIVE, but I've lost parts of me -- physically, spiritually, mentally and that's what I'm having to learn to cope with today, not to mention the fear of recurrence.  People think I'm over reacting when I say that I want to see my 10 and 12 year olds graduate from high school.  I'm not.  I've checked the survival rates for my type and stage of BC and I know is 50/50 for 5 years. The worst part of this whole thing has been dealing with my ex husband during it.  I had to start litigation in family court a couple of months prior to my dx.  We have been divorce almost 10 years, but visitation and child support issues were problematic.  At my deposition, his lawyer kept question my dx.  Like I made all of this up -- I said please amputate both my breasts, shave my head, pump my body full of toxic chemicals just for sympathy.  What an idiot.  Enough ranting by me --  I just want you all to know that I feel so many of the same emotions.  I pray we each find health and happiness and acceptance.

May God bless each of us.

Charmaine 

lovemyfamilysomuch

Amen and blessings on us all.  Cancer is a lonely experience, but having this kind of support (you all) makes it easier to bear.  Ah, the fetal position, a position I know very well, since I spent most of the winter in it.  Cancer SUX big time, but knowing that we sisters stand together makes it better. 

threeteens

ailenroc,

You are not as alone as you think.  I also have those feelings, emotions, and thoughts.  Some days are better than others, some days fly by and some days drag on forever.  I am sorry that I take comfort in your honesty, I felt as though I had written it.  At least we can come together on this board and lift each other up, listen to each other and take comfort in the fact that we know we are not alone.  Best wishes,

threeteens

Some days you have to look a little harder for the good things in life!

lottie

hey charmd -- those people who say you should be "grateful to be alive" -- line them up and I'll slap them for ya! It'd do me some good too!

Lottie

Renata

That comment infuriates me too, YOU THAT ARE HEALTHY SHOULD BE GRATEFUL!!! How do they dare to lecture us???

lovemyfamilysomuch

Lottie, LOL I know this is a serious subject, but the picture of you slapping one b**** after another just cracked me up xo