Cancer is a lonely experience ...

ailenroc · July 2009

ailenroc · July 2009

A year into cancer I am dismayed by how lonely an experience cancer is. Nobody, really nobody, not your loving spouse, not your caring friends and not even your mother wants to hear about your cancer all the time. But I have it every day. Being a cancer patient or a cancer survivor has become a part of who I am and I can't turn it off. I have learned not to bring it up every time I talk to family, friends or colleagues because I score well on the emotional intelligence scale. I get it that no one wants to keep talking about my cancer or keep hearing about my daily travails related to cancer. Who wants to hear that I just happily figured out the best way to wash and dry my scar tape without tangling it into a sticky mess after struggling with it daily for two months? Who wants to know what the nazi-nurse said when I went to chemo? Who wants to hear that I can't get used to the side effects of Tamoxifen and am seriously considering dropping it? Well, .... who?

I let out that I added two new holidays to my calendar: D-Day and M-Day: the anniversaries of my diagnosis and my mastectomy. No one appreciates that. I only get some awkward comment and a swift shift of the topic.

How do you deal with that?

There are other emotions, a whole host of them ... confusion, helplessness, hopefulness, uncertainty, ambivalence, guilt, anger, rage, sadness, depression, flippancy (If you've got it, flaunt it (new boobs), recklessness (hell yeah, hang gliding sounds good all of a sudden), joy to be alive, gratefulness (for the support I received), exhaustion, feistiness, loneliness, ...

Any of you feel that spectrum of emotions or am I off to the deep end?

cmharris59 · July 2009

I, too am very upset by my quality of life since dx. I have been on disability for 2 years due to se from tx. It is pretty evident that the issues are permanent.

I am unhappy with choices for recon. I have been unable to have it yet due to radiation and CHF. I have permanent neuropathy, CHF, zero libido, chemo brain and chemo pause. My asthma has gotten worse and I spend a lot more time in bed - more fatigued than I ever have in my life. I live alone with 5 cats and the activities that I used to love and made me content to be alone are now nonexistent. My quality of life has me on 3 anti anxiety drugs daily, methadone and percocet daily, in addition to the asthma drugs that have increased. I need physical therapy weekly due to the neuropathy.

I was an amateur belly dancer and have been told those days are over. I was a geologist and I needed my math skills which are gone, and I used to spend 30-50% of my time on the job in the field - another something that I can no longer do. Physically, I am not worth much. Mentally, my education was wasted. Financially, I amin a downward spiral. All in all, I am devastated.

So how am I supposed to adjust to my NEW NORMAL? I am disgusted and have many days when I wish that I had never had the tx and had just let the cancer kill me. It might have been better than this SLOW agaonizing death that I am enduring.

I know I sound depressed and to some irrational, but my life has been destroyed. I may lose my house, my cars, my motorcycle (I can no longer ride it anyway), my livelihood, everything that I have worked years to attain. My finances are shot. What once was a great FICO score is now that of a deadbeat. I have had to fight non stop for my disabilty and my health insurance. It is as though they think that this is the life I wanted.

I never married, never had kids, and have always been independent. Now I find myself dependent on everyone even total strangers to just help me get thru the day if I venture outside of the house. That alone is difficult since emotionally, I have recurring panic attacks that are manic in manifestation. They can last for days not minutes.

Can I just say that cancer sux, but so does life after the life saving tx. Was it worth it? Ask me again in 5 years. I doubt my answer will have changed much.

coonie · July 2009

Hi Alienroc.............well, for one thing it helps me to come to these boards, because these ladies DO understand what you're going through. Some have experienced the same thing, and some worse than others. I find myself here everyday.......especially going to the positive threads to have fun because it does take my mind off cancer for awhile.

Maybe if you hang out here awhile on some of the "fun" threads........i.e., Housekeeping, Escape, Cute, The Beach.....you might find yourself moving further and further away about thoughts of cancer and enjoying the company of others who are going through the same thing.

Please come back and visit. I'm sorry you're feeling this way. Let us try to help.

((((((((((((((gentle hugs to you))))))))))

idaho · July 2009

I hear you alien- I even thought I might start smoking again! what the hell...people cannot relate to this experience until they have it----maybe someday you can help someone that is going through this- and REALLY get it......peace to you, Tami

sailorgirl1 · July 2009

cmharris59 and ailenroc - I'm glad someone is finally making a really honest emotional posting about what having cancer does to us. Although mine was caught extremely early and I feel very very lucky, this will still change my life forever as it has changed all of ours.

Somehow I feel like my life is a DVD that was put on "pause" the day I received my dx. My life right now is about recuperating. Friends who haven't been down this road just don't understand. We're in our own private club. Yippee? As bad as the disease itself is, the treatment and possible side effects are almost worse. Add this to battling for health insurance and creditors and it's enough to put anyone over the edge.

This is real and it is unfair, please don't forget that. Remember that each of you is entitled to your feelings; this is unbelievably tough. Tougher than anyone who hasn't been through it will understand.

cmharris59 - Having been once very a very active (master's swimmer, skier, hiker, scuba diver) it's upsetting that we can't do any of those things again. BUT - PLEASE DON'T GIVE UP HOPE YET. A way will open to ease your pain and suffering. Your life will be very different but will be richer in other ways. You need to remain hopeful.

I admire all of you (and me) for going through what you are. This disease sucks, no doubt about it. I'm sorry I can't offer any words of wisdom but I encourage you to vent here as often as possible. This is sooo important. Remember that people on these boards are reading and responding to you. You're not alone!

OG56 · July 2009

No one else can understand what we have either been through or are afraid to go through. It is kind of like trying to tell a man what it feels like to have PMS and a period, they only experience the fall out. I feel the same way about my husband and family, they do not want to talk about it. I am waiting to see if I have a reoccurance and when my DD called and asked me what I was doing the other day I told her I was researching types of reconstruction, because I just wasn't sure if I would want it at all if I needed a mastectomy this time. Needless to say she flipped " why are you even thinking that way!" Thank the goddess that we have each other. Hugs and Love to you all.

sheila888 · July 2009

Hi to all lovely people,

I am new here but not to BC. I was diognosed over 4 years ago. Early stage But I went through the same thing as you all did and i still am, i did not have a computer until few months ago, I felt kind of isolated and I still am, it's almost like commiting a crime when i mention " My 4 months follow up next week" these are 1 of the many reactions i get

Don't even thing about it.

You are fine why are you worrying so much etc...........

One day i just couldn"t take it anymore.......I remember getting angry and explain to well meaning people that they are not taking my blood to just check my cholesterol level which my doctor does it every 3 months, i said they are looking little cancer cells if they are swimming or not, people dont understand what we are or went through.

That is the reason i decided i will not mention the word bloot test, mammogram, being extremely anxious every 4 months.

Thank you everybody for listening and if you feel like writing it every day DO so.

Support is the most important thing that we all need and deserve.

I feel better already. By the way the blood work was good then I had to hear I told you so.

A peaceful night to all of us.

Hugs

Sheila

nwood450 · July 2009

Hi ladies ... yes this cancer is a lonely experience. The ups and downs of this emotional roller coaster is enough to send me over the edge on some days. I am 7 days into radiation after two surgeries (mastectomy w/reconstruction and lymph node dissection a month later) this was followed by hellish chemotherapy. I know my friends and family try so hard to understand but walk a mile in my shoes! So many people keep telling me "keep a positive attitude" "your attitude is what will kick this". Ya ... I know that. After all, what's the alternative. But sometimes it's just hard to plant that smile on your face and say all is well. I am soooo tired all of the time. I have had people say to me. Aren't you finished with chemo? You should be feeling better, right? WRONG! They just don't get it. I want my hair back. I want my eyebrows back, I want my eyelashes back. Everything that made me feel feminine is gone. I want to go to the beach again to sit in the sun. Libido???? What's that!!! I guses this is the new normal.

Ok ... so today I will have myself a little pity party and then throw myself back on the bus to crazy town and start all over again. Thanks for listening everyone .... you all know how this feels and it's comforting to know that.

Nancy

coonie · July 2009

(((((((((((((((((hugs to everybody))))))))))

You're all right........only us girls know what we're going through and will go through for the rest of our life.

anne26 · July 2009

I understand how you feel. I am struggling with similar feelings. everyone treats me like everything is fine since I had my surgery. they dont understand that this is something you have with you everyday and forever.

hollyann · July 2009

Well I am 2 1/2 yrs out and I STILL feel that way...And NOONE understands...Everyone thinks once surgery and chemo and treatments are all over youshould be back to normal......AS IF!......I have so amny SE's I have to deal with physically and emotionally that I am surprised I can even function most days......I got laid off last month so now no insurance but I may be going back soon.....BUT trhen my union boss wants me to take medical leave to get my physical self sttraightened out because he knows what am going through and how I hurt all the time and can hardly walk most days now........Ah gee!.... I started rambling!...Sorry but it felt good!.......Great big hugs and lots of love to all my BCO sisters!.........Everyone here gets it......I am so glad I have you all........I am very fortunate........

Jorf · July 2009

come here

go to a support group

write a journal or a blog

there are ways to deal with it and not feel lonely and also not 1) alienate your friends and family, or 2) feel hurt or resentful

Debonthelake · July 2009

Breast Cancer is certainly a trauma. Yes, it is unfair. But, then life is unfair. It is helpful to vent at times. It is important to allow ourselves to feel all of our feelings. When we allow ourselves to really feel angry and scared and venerable some how it also releases us to feel happy and peaceful and loved. I have felt all of these things during the course of my treatment. But I really don't think I've felt lonely. I've had such wonderful support from family and friends. These discussion boards have really been beneficial. Live is always changing but even after breast cancer that doesn't mean that it changes for the worst. I have experienced much growth during the course of my treatment. I hope that my cancer has made me better in many ways. I think I am more compassionate and I also value life and living much more. I realize how important it is to live each day to the fullest extent of which we are able. God bless all of you.

AliceJean · July 2009

Almost 8 yrs from original dx, 2 1/2 of that as stage IV...yes, I still have all of those feelings.

nene2059 · July 2009

I am struggling with this too. I had my bilateral mastectomy on June 30 and I hate the drains (2 of which have now been removed), hate feeling fatigued, hate the numbness, tightness, decreased range of motion that I am going through right now. The surgery went well and all of my nodes were clear and the tumor that I had in my right breast (the one I felt that started this journey) had completely disappeared since I had chemo first. The tumor that was found in my left breast after my first MRI had 1.2cm left when taken out by surgery. I was upset by this because I thought it was 1cm or less to begin with since it could not be found on mammogram or ultrasound when I first had these done. I thought that meant that it had grown during chemo and then I found out from the nurse that it was estimated to be 1.6cm when found not 1 or less. How could I not have had that made clear to me? I still do not think that going from 1.6 to 1.2 after 4AC/4Taxol is enough when the other one disappeared. Am I worrying over nothing because they took it all out during surgery anyway? I have a lot of support from my husband, friends, and family but I still feel angry, depressed, scared sometimes anyway. I am still in the process of treatment and I am hoping that things do get better with time. My grandmother is a 41 year survivor about to be 88 so that should give us all hope. Another question I have for anyone that took Tamoxifen was how long after chemo or surgery was it prescribed for you? My chemo ended May 28, surgery was June 30, and my follow up with my onco is July 23. He will most likely prescribe then. Is that a normal time frame? Thanks for any advice!!

sheila888 · July 2009

To nwood450

I did not feel lonely, but I learn one thing from my experience that some people they actually think that the less talk about it or even not using the word cancer that they are less likely will develop BC. The first year was different they saw I lost my hair, I was still in treatment......

but as the time passes there is this false believe that you are completely recovered.

I want one thing from people that they are close to me ACKNOWLEDGE and dont dismiss my fears and feelings by saying "You are okay now"

I think this issue is very close to home, the more i read about all the postings i see most of us are affected.

Peace to everybody. We are in the same shoes.

I am so grateful to everybody for listening.

Sheila Smile

Debonthelake · July 2009

One thing positive about triple negative breast cancer is that it responds very well to diet and exercise. When we are walking in the neighborhood and people ask how I am doing, my husband comments on how our walking kills cancer cells. It gives us both something to do to be pro-active.

cheryl58 · July 2009

I am 3 years out. I think I understand the loneliness. I don't have it all the time, but when I think about my cancer, I do. Everyone around me believes that I am okay and done with everything. They feel that we have gotten through the crisis and life is back to normal. But for me, it is not nor will it be. I, too, am grateful that I have a good prognosis at this time and I know their are all sorts of people out there with things worse than I, but I cannot help falling back into almost a self pity feeling. I want my husband to say that I look pretty and that he loves me with or without boobs. He said those things right after everything, but now I want to hear them again. I need reassurance because my life has not gone back to normal. Sure, from the outside looking in, anybody would think it had but I have a very profound, deep sadness that I feel that I carry around with me all the time. It does not stop me from doing what I need to do, but I do not think it will ever leave me.

HelenaJ · July 2009

Yes I think it is the loss of innocence. We now know what it is to look death in the face and it is scary and lonely. Unfortunately with this disease it is the disease that keeps giving, it never goes away so we are constantly reminded of the fragility of life. I'm keeping my head above water at the moment but only because I allow myself to talk here about breast cancer and my feelings.

Cheryl I too want my husband to tell me I'm still attractive and sexy but I'm on a mission to lower my expectations, with everybody. I'm doing my best to tell myself I am pretty.

I can't believe how addicted I have become to this forum and I would imagine that will wear off in time but I need it now and I love all the women who post here so openly and honestly, although my heart breaks just a little more every time I read some of the sadness you are going through. My friend (triple negative) told me that studies have proven support groups are so beneficial to mental health. Big hugs to every one.

Edit - it is corny but go to the Humor and Games forum and read some of the jokes under the Smiles Chuckles thread - may be temporary but did put a big smile on my face.

bettysgirl · July 2009

i'm glad you started this thread. It is a lonely place to be. While I had the support of many while in treatment, that soon fades and once you are past "active" treatment they all fade back and assume everything is okay. They don't realize that the chemo keeps giving long after the last infusion, that the menopause, if chemically induced is horrible, that you have to struggle with so many isues. They also think that once you get to tamoxifen, it's just a simple pill and that your journey is complete. My emotions have been all over the place the past few weeks. Somedays I wish i had been a candidate for recon and some days i am completley happy i didn't have to fool with it. I have been lonely, sad, frustrated, angry and moody. Last week I was more deeply depressed than i have been since this whole thing started. When you are a "newbie" everyone posts and tells you how doable the journey is and after you have been here long enough you learn the stark truth. It is a life changing event for every life it touches. Everyone reacts to that change differently. No one reaction is the correct one. I haven't found the silver cloud yet. I do think that the tamoxifen is partly to blame for the moods as i just took a break from it this weekend and today i am feeling better..I now want the port out as it is another stark reminder that it could still be lurking waiting to come back. Onco wants it in for 2 yrs..that would be until sept of 2010. People need to realize that this is now a part of who we are, while it does not define us, it is a part of our lives and we can't brush it under the rug like it never happened. I pray that those that don't understand it never have to go through it.I wish noone ever had to go through it. I think that is why we keep coming here to talk. we all know the journey, we all know the ups, downs and in betweens of this stuff and we come here becaue we can be heard and most importantly understood.

donsuzbee · July 2009

I was diagnosed in 1993, had a mod rad mastectomy then in 2001 had a recur and 6 weeks of radiation. I absolutely felt as all of you are feeling now!!!!! But I can say that the old saying "time heals lots of things" is certainly very true. You are a woman so you are strong!!!!!! Stay strong and just know that time is on your side!!!!!!

You are all in my prayers. Use this site to vent all you want!!!!!

Susan B.

candie1971 · July 2009

My bc sisters...they understand. That's why I come here and will continue to come here . I need to be here for bc sisters who need me as I need them. ailenroc..here is where it all is...here is where the support,love,hugs,sympathy,empathy are. Here is where you can say what you want, anytime you want ...we are here for one another. You will get through all the emotions of bc, just by coming here where we love you!!

RuthieRR8 · July 2009

Hi All,

You ain't just kidding!!! This is an alone experience. I can't blame everyone, tho', because honestly I myself didn't like to think about it, either, and gave the usual answers to those afflicted. Now, of course, I can relate to that so don't discuss it any further than, yeah, some days o.k. some days not. My husband has been pretty helpful and do have a lot of people call and email me so i'm lucky. However, I really don't want to be dressed in pink for the rest of my life. Of course the only time i feel really normal is when i wake up in the morning before it hits me all over again. Don't share with anyone how i really feel most of the time-they don't want to hear it and i don't want to hear myself saying it. I read a lot of light books which temporarily help me forget myself...that's what i do-try to forget myself and my condition. Long to feel normal again and it happens momentarily-when it does, I revel in it. Most people including husband and children, friends, etc. ask, how're you feeling today? Husband especially-how do you feel this minute and then this minute-not too bad. Shut up. Tired. Tired they understand. Weak, angry, hopeless, no. They don't want to hear it constantly. He hasn't even seen my bald head-you kidding? He'd freak. What are you going to say?! Lousy?! I think if you wear your heart on your sleeve you will wind up alone-laugh and the world laughs with you-cry and you cry alone. That was never so true as now. Write a journal of your feelings to get them out and come here and read what others are going thru'-you will feel blessed that you're not worse. Had bi-lat followed by chemo-final chemo last fri. Right now my hopes are simple-just want to feel better and have a dunkin donut i can taste at long last.

Bless all of you sisters.

Formymom78 · July 2009

Hi everyone. I am reading all the posts and am so sad that some survivors feel that family and friends no longer care. I found out my mom has bc on June 26th, her surgery is schedule for next wednesday, and I am scared shootless. She has not wanted to talk to me about it and I am torn between being pushy to get her to open up because I know it is not healthy to keep her feelings inside or try to make me "not worry," or respect her wishes and give her space. I live in another state so I can't hug her or see her every day. I will see her tomorrow and will stay 10 days. How can I let her know I think about her every minute of every day and have been researching and reading and worrying and hoping???? If she doesn't want my comfort emotionally, what else is there I can do? Is there anything I can buy or do to make her more comfortable? she's having a bilatera mast w/ sentinal node removal. My sisters and I are going to rearrange her closet to get everything waist-high and the same with the kitchen, but as strong survivors is there anything else you found helpful? Thanks and hugs for you all. I am learning so much from so many strong women.

AnneN · July 2009

Hi, Formymom.

I do daily 1/2 hour walks because it's been shown to make therapy more effective in breast cancer patients (Debonthelake's post above mentions this, too). So as soon as your mom is able to walk after her surgery, you could offer to go on walks with her. It is always easier to get up and out the door when you have a walking buddy.

Then you can leave it up to your mom whether she wants to talk about it on your walks or not. Just walking, even if you don't talk about it, will help her feel better physically and emotionally. And it's always nice to have the company.

Good luck to you and your mom!

HelenaJ · July 2009

Formymom, I was a strong survivor. Took everything in my stride, coped amazingly well and didn't ask for help, unless it was for my daughters. My sister-in-law lives a long way away and would phone and say she didn't know what to say or do for me. I didn't make it easier because I was so self sufficient and happy. Even though she couldn't do anything for me she rang every week and sent me up a big box of pre-loved books for me to read during my recovery after my bilat mast. Just knowing that she cared and keeping up the contact was fantastic for me.

As for practical things, I bought a big cushion with arms to sit upright in bed and it also came in handy after my exchange surgery.

big hugs - you sound like a wonderful daughter

Helena

Debonthelake · July 2009

The truth of the matter is that all of us are alone in this world. There is a difference between being alone and being lonely. I guess over the years I've come to feel comfortable alone and my faith has been something that sustains me. Yes, cancer makes it abundantly clear that we do not know how long we have. This is true for everyone but cancer slaps us in the face with our own mortality. This knowledge, however, can be viewed as a gift. We can learn to be grateful for every day and cherish our loved ones. It can help put our life in focus and can help us decide which things are really important to us and which things are not. It's a difficult lesson and it takes time to work through everything and get to a place with a measure of peace. The prayer of serenity as sustained me throughout this journey. May all of you find the peace of mind to accept the things that you cannot change. The courage to change the things that you can and the wisdom to know the difference. God bless

Formymom78 · July 2009

Thanks for your replies. I am ready to help her any way she needs it, even if it means taking my Dad out to get him out of her hair. : ) I sent her a link to this website because it seems like there is so much support here and so much to learn, even about the scariest situations. she is the first in her family to battle bc so we really don't know what she is going through, we can only imagine.

Good night from Boston and thank you,

M

Makratz · July 2009

What you are feeling is so normal. We have all been through it. I have come to learn that the only people who will truely understand how we feel, are ourselves. Please come to these threads and make friends with people. We have all been there and understand. I'm so sorry that you feel this way. Hang in there, find comfort in these threads.

Big hugs to you!

CHER07 · August 2009

I am just 4 weeks out of radiation, which was preceded by chemo. My onoc. had me start on Femara the day after my last rad tx.

I feel so teribly exhausted & fatigued.. Weak to the point I spend most days in bed, Cry at least once a day. wake up feeling nasueated and panicky.

Anyone else share worse feelings after all tx is done? & how long till i can feel human again?

Cancer is a lonely experience ...

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