Cancer is a lonely experience ...

vivvygirl

Cinderella,

Big Hugs to you!!!!

I understand the sibling thing but I only have 1 sister who decided that it would be better off for her not to be around me now I have bc.   It really does hurt, you start to think if she won't help me now when will see help me.   I would have been around if it was her. I think I find it harder as she lives 5 minutes away and when she was going through her last divorce allowed her to live with me and my husband rent free for 18 months.

Big hugs and love,

Viv

kawee

Cinderella - I am so sorry and as I wrote earlier I know the isolation and loneliness that comes with this disease.  I am still amazed.  I think people are afraid of cancer, they don't want to talk about it or see what someone has to go thru because then they will even be more afraid of it.  My nurse navigator told me that no one wants to talk about cancer until they get it. 

 Now that I am in the middle of rads, I am starting to feel somewhat better about the whole situation, but i still harbor hard feeling especially to some of my family.  Like vivygirl, my 1 sister used to call me at least 3 times a day, then it went to 1 and then alot of times none.  Now that I am not so devastated she is calling me alittle more.

Oh, well, I figure some sort of blessing will come out of this.  And I can hardly wait to see what it is.

I wish I could reach thru the air and give you a huge hug.  I care about you.

Marsha56

This is so weird I have been fighting cancer for 13 years..................... I have 4 sisters an not one of them has ever talked about my cancer they have made mean comments to mydaughters on how I messed up there visit home because of my cancer.... My mother won't talk about it because it is too hard on her..LOL So I told all of them to go to hell I did not need this BS in my life anymore so they where find with that. If it had not been for my chruch family and a few friends I think I would be dead by know.y daughters have been to hell an back many times over the past 13 years. So we are not alone we have each other where no words need be spoken... We get it! peace an hugs.

cinderella_1950

Wow, gals...thank you so much for the hugs and sharing your experiences.  I almost think that people feel they can "catch" cancer from us...haha.  But, when it comes to your family, I had high expecations from them.  I have forgiven them...that's all I can do. I can't go on any longer with this bitterness and anger in my heart as I'm binding myself from any blessings God has for me.  Should the time come and I'm needed, I will be there for them!  Love is the greatest...and by the grace of God, I will show them my love when/if they face a trying time in their lives.  God forbid!

It was almost the same after my hubby left me, after 36 years of marriage.  No one was there for me...good thing I had my counsellor!  She's been excellent and I know I can trust her.  I often wonder why so many things go wrong for some people...it's like one thing after another, but I do know that God still has a plan for me because I am still here!    And, as I walk one day at a time with Him, He's teaching me so much!  I don't have to be like the others...I don't have to stoop to their level (even though I have failed), but God always fogives and we keep pressing on.

 Hugs to you as well, gals!!  It means a lot to me to know that you're not alone...not by a long shot!  We do have a support group, but due to my fibromyalgia, by the time they get together at 7:00 pm, I'm SO tired and my body is ready for a rest....and I rest until I go to bed.  I thank God I'm alive, and I thank God for this site and all the wonderful gals here to support each other!

holligoog

no matter if you have someone at your side or not CANCER is a lonely experience.
I was just told by my Onc the other day that I was suffering from PTSD. Dx 12/08 with Triple-Neg BC. It's been a long and traumatic road that I have had to basically fight alone (my divorce became final in Feb. 2009- 2 weeks after my first surgery). My Onc put me on an anti-depressant last week. Recently I cry all of the time and that is NOT like me!

I found this poem and I try to focus on the message~

My Battle - My Victory

Yesterday I fought a Battle, But I did not fight alone-

I had a Protector - A Guide, I was never on my own

This enemy came to me suddenly, No warning as to prepare-

And before I knew what happened, this enemy was everywhere.

I felt so overwhelmed; Did no one know my pain?

How could this be happening to me, How did it know my name?

Today I fight this battle, The enemy with me still

It has not yet taken control, Nor has it broke my will

It is hurtful and it is cruel, It doesn't care the damage it causes

It is wearing down my defenses; I can soon count my losses.

It is ruthless and emotionless, Its purpose to destroy

I can not, must not let it, Will not let it have control

Hear me when I tell you, Please listen when I say

I have many scars from this battle; I do struggle from day to day

It takes many things from me; Within my body it has much power

It affects loved ones around me; The battle has become a war

You may not know by looking at me, Then again maybe you can,

That this enemy shows no mercy, I fall when I can no longer stand

It does not care what age you are, or your status here on Earth

It doesn't count your income, or what you think you are worth

This battle that I speak of, CANCER is its name

And because I continue to fight, I will never be the same!

Tomorrow may never come for me; I live only in the present

My life is right here, right now, What I have is this very moment

But I will continue to fight, For I learned down on my knees

is where I fight this battle, It is where God gives me the victory.

2Hands4me

cinderella and holligoog - so well expressed! Thank-you for putting into words and adding the poem. It is wonderful to know so many feel the same, although I feel for all who do! I had a great sense of peace with my dx and surgery - now we are testing my left breast....... I know God is still in control and He knows the plan for me. We want His will in our lives and think we are ready but I have to admit that I wasn't ready so soon! I'm daily (or more!) leaving everything in His Hands but feel I need to be informed and help make appropriate decisions! So far, I haven't told my folks, therefore very few others, as I'm just not ready to be a support to them. I'm teary easily and so-o-o tired and so ready to be done with so many medical procedures!

mumito

2HANDS take your time and only tell your parents when it is right and you can do it in person.I waited 8months before i told my parents.I could not do that to them over the phone and I was in chemo first before my surgery.I think telling my 82 year old father was the hardest thing to do.

So wait until you are strong enough to handle it and take support with you.

kawee

You know girls, I am so down today.  Guess I did too much yesterday.  I am totally exhausted (15 days of rads).  Lots of my family and friends are traveling this weekend.  I guess I'm just feeling sorry for myself.  A (friend???) of mine yesterday and I were looking at quilt patterns, I told her I wished they had a kit available so I wouldn't have to go out and try to find all the fabric.  Know what she said, "You're just too **** lazy to get up and go out and find it yourself."  It hurt my feelings that she is so blind and insensitive.  Like I said earlier, you really find out who you want for friends and who you don't.  I'm hurting enough without being hurt anymore.  Don't know about you, but the more tired I get, the more emotional I get.  I'm going to go take a long nap, maybe that'll help.

Hope everyone else is doing well

leaf

Oh, kawee!  I'd be mad at that 'friend' too! When you are hurting, you need understanding. 

I sometimes quilt, and I have a quilt in my living room that was started before my 'suspicious mammogram' in Oct 2005.  Unfortunately, its a nursery quilt (nursery rhymes) for a boy who is now 4.  I'd better get on the ball, or it will be a quilt for the dog or cat.

I get more emotional when I'm tired too.  

Only you know how much energy you have.  No one should judge you.  You need to do things in your own time and own way.  Holding out my cyber-hand for you!!

cakeisgreat

I echo leaf!  Even if you didnt have BC, how can anyone say such a rude comment.  Everyone gets tired sometimes.  I've been taking a cat nap every day for years, even when I was a teen (falling asleep in Spanish class, seriously!) and I'm 37 yrs old now.  Some days with the rads, I am reallllllllllly tired...I call it "the exhaustion" tired where I cant move and feel like I have the flu.  No one in my family minds a little extra "play time" with a Wii remote, or TV, etc. when I nap .

You are NOT LAZY.  One thing I've learned so far with this BC is that it's high time to slow down and appreciate life...smell the roses...take a NAP when I'm tired and wake up hopefully refreshed to see what the next great thing I have to do.  Maybe look for quilting fabrics.  Then again...maybe not! Watching someone quilt on HGTV is good too.

Okay, off my soap box.

vivvygirl

Kawee,

Take all the time you need to rest , this is an exhausting thing we are going through. It is hard when you go to sleep tired, wake up tired. The ability to do the things we want will come back but it will happen in the time frame intended and things cannot be rushed. Wouldn't it be nice if your friend offered to get the materials etc for you instead of making you feel bad? It is true that you do find out who is truly there for you.
So big hugs for you Kawee,

Like Cake,  I also have naps every afternoon that I can and think that I have to slow down and take care of myself . Have always put others first so this is also difficult for me. So Cake snuggle down under the covers and get some me time and a big hug for you also.

Had one of those experiences with people yesterday.  Before BC had lost 20 kilograms but since have put most of it back.  My mother came over yesterday to tell me about all the things she is doing in her life and decided that I needed to be told 3 times that I need to go back on a diet and that was in the space of 1 hour. I am not happy about gaining the weight again but at the moment it is not my highest priority. Instead of motivating me it sent me straight to the fridge in search of comfort food.  She said that I had nothing stopping me from not losing weight now.....oh maybe my treatments and medication??????  Words like that do cut through you especially from people that you think should be kinder to you.  Spent most of the day in tears, feeling fat, tired and lop sided.  

Thanks for listening

Viv

 

kawee

Thank you everyone for being there and understanding.  I don't just cry for myself but as I was reading your answers, I cried for all of you too.  I'm so glad I found this site.  You all have done wonders for me.  And to think, I'm even hearing the feelings of someone from Australia, although to be honest, I have no idea how much a kilogram is.  How much is that Viv (I'm actually going to learn something, too!!!!)

vivvygirl

Kawee,

That is 44 pounds....oh dear that sounds even worse than 20 kgs!!!!!!

Hugs

Viv

hrf

One of the things that makes me feel so alone is that the man who was in my life and told me that absolutely 100% he would hang in with me has decided that he he is too selfish to be of any use to me......so he has abadoned me entirely. It's not like we were married or anything but I had counted on him. So I now am boobless, shaped like a potato (have put on 30 pounds during chemo & rads), still bald (12 weekds PFC) and am feeling more miserable and alone than ever. This is my second bc and I don't think I have the strenght to bounce back a second time, especially as I have lost so much this time.....my breasts, my relationship, my career, my self esteem.....it's too much

kawee

YES you can do it again.   Hair grows back, boobs get put back on, pounds come off and yes, even self esteem is restored.  It's alot, your miserable, but this will pass.  I will lift you up in my thoughts and prayers.  Oh, yes, he was right he's too selfish to be of use to anyone.  Good riddance!!!!   Hang in there my friend. 

cakeisgreat

Hiya, hrf! 

Good vibes and prayers (whichever one you prefer ) from me are with you.  This is an overwhelming chapter in your life.  Hopefully that guy who left you will not have to learn the hard way about friendship and commitment by someone else leaving him in his time of need.

I echo kawee!  One moment at a time this too shall pass for you and all of us!  Moment by moment. You will be the inspirational success story that can tell others (maybe even a new hubby who likes a little muffin top belly ) that you made it, even when it seems impossible.  And it will give them the strength to go through whatever dark hour they faced.

lovemyfamilysomuch

We will be with your hrf, when you feel alone and feel that it is too much.  We will be with you.

In sisterhood, xo

twodogs

Wow, I found this site yesterday because I was feeling so lonely and angry and sad and....etc.  I just read thru all 4 pages of posts and it was such a relief to find that I am not alone!  I can't even post now because I am crying from relief!  Thank you all for baring your souls and showing some of us that it is OK to feel the way I feel!  Thank you.....

Hugs,

Tina

cinderella_1950

hrf:

I, too, live alone and it does sometimes suck. And yes, cancer certainly drains us and unfortunately, the very ones we love do not understand that.  Like the others said, we all have each other here, and I know I'm SO glad I found this site.  I can pray and I know the One I pray to hears and answers my prayers! I don't want to be preachy, but if I can encourage you to pray to God and read the promises in His Word and believe them no matter what we face.  I also know that it's not easy but that's all I have and that seems to be working for me.  HE is my life...my everything...and He is my Healer, my Great Physician!  Remember the words to this hymn "It is no secret what God can do...What He's done for others...He'll do for you!" 

I will pray for you...please, don't ever say that you've lost it all, gal...because you "haven't"!!  Don't listen to those lies...and they are lies!  YOU are here too, for a reason...and minute by minute, day by day, we walk out our lives knowing that we are in the center of His will.  He loves YOU...don't ever forget that!!    HE is the One who keeps me going!!! 

Hugs to you gal!!  Wish I could give you a big hug now!!  God bless and please hang in there!

cinderella_1950

twodogs... welcome and a big hug for you too, gal!! 

susan_CNY

nothing to do with the topic other than I am a 3 time cancer survivor, this time of year I am insane, my only sis passed on Sept 10, 1998 after a long battle with ms, my family wanted to bury her on  Sept13, my daughters sweet 16 birthday, I was the miserable wench who said no way, are we doing that to my daughter , some people are just thoughtless unless it is important to them, none of them remember my little girls birthday to this day, I do, I love both and pray that my kids don't inherit the nasty cancer genes I did, God Bless everyone

kawee

Susan, Alot of people are thoughtless.  You've been thru alot, but going strong.  Good for you.

I had a daughter that was stillborn at 9 months on Sept. 13, but I still consider that her birthday,  It's been along time ago.

 Aren't daughters wonderful.  I have another child, my only one,  and she's great.  And besides, she gave me that best thing in the world, a beautiful, funny, smart and the love of my life, my granddaughter. 

cmharris59

Hi all and yes you are not alone although this is a lonely disease as I have said before.

Susan,

I can fully understand your insanity this time of year. Cyber hugs to you!

Helen,

I, too, am single and feel as though I have lost everything. I still manage to wake up and get through another day. I just wish that it got easier. Instead many days it feels like it gets worse. I hope that it gets better for you.  It is hard and we all understand the hopelessness that comes with this disease. Some manage to navigate it better than others.  Others, like me, go insane and never manage it. I hope that you are somewhere in between, closer to the navigable ones. 

To all who suffered insensitive loved ones and relatives...  We all need to remember that others have their ways of coping. I have a friend that consistently tells me that I need to get off my azz and move around. That it will make me feel better. It is her way of trying not to let me get too resigned and give in to the pain. She doesn't really think that I am lazy, she just doesn't want me to give up. At first, it took me awhile to realize this, but I understand it now. 

I have also had many "friends" that have abandoned me and offered false help. I have learned to forgive them and ignore them. LOL

C

ReneeJean

First of all, prayers and hugs to each of you!  Many of us have a road to travel that is not pleasant and then cancer is added to it.  But ladies, I do have hope that at the end of this journey we will reclaim our lives---our bodies and our self-esteem, somehow. 

I too beleive that BC is a lonely road.  But mine is self imposed.  The day I was diagnosed, I would have gladly climbed on an airplane and flown far away and not come home until treatment was complete.  I am very private of my feelings even to my family.  I am the 'strong' one.  I am Mom.  I am the Coordinator of all holidays, parties, birthdays, celebrations, event planner, weekend planner, etc...... I work full time in a Pedi ED where I must be strong for my patients and their parents, who sometimes are facing the worst day of their lives.   I seldom cry..well, I do shed tears, but seldom bawl and am never hysterical...except when alone in the car usually.  My family has never seen a full meltdown until the week before my surgery last month!  That is just who I am.

 The problem with that is that my cancer is NEVER off my mind....but to my family, all seems normal.   No one had any idea that I was scared or upset.  I handled it like it was just something to deal with and I would be fine.  Which of course I am, but not being able to talk about it made it very lonely.  As I now face Chemo, I am in the same situation, but I am trying very hard to be more open.  The problem with having cancer and facing treatment is that you feel you must reassure everyone else, even when you are scared shitless yourself.  So, instead of showing that fear, you gloss over it.  And you are the only one in the room that sees the big ol elephant sitting there......  So, yes, I feel lonely.  And I am blessed with the most wonderful husband and children and friends and co-workers.  The past 2 weeks I have had over 100 cards from my friends/co-workers and at least as many phone calls.....I am very loved.  I know that.  But I still feel alone.  I can't possibly tell anyone what I am really thinking/feeling....I mean, who wants to hear that?  So, I continue with my life motto of 'never show fear'.......

I know this is different from what many of you are going through, but it is my BC experience.  We all get to travel this road based on our own life experience.  I am very blessed in so many ways.  I just wanted to share that even with a great support system, we can still feel lonely and alone...if that makes any sense at all.

kawee

Renee Jean - We go it alone.  We go under anethesia alone, we are in the rad room alone, we feel bad alone, we're exhausted alone, we mostly cry alone, no one can or wants to share it.  It's not like going shopping with our friends.  BUT, this is one place where we can share anytime.  I no longer feel alone.  I sure did at first!!  My sister said to me,  "I can't believe this happened to you.  You're the strong one in the family, you seemed infallible.'   

EWB

 Wow...just found this thread today...amazing ladies you all are.  Renee- so true, at least for me- never had a melt down in front of my family or friends, sort of gloss over it all--not because they don't care, I have been truly lucky and given an amazing gift in my family and several friends that have been so helpful, kind, supportive, they acknowledge that they don't and can't really understand what its like but are there for anything I need or want. But of course I have always been strong (physically, mentally, emotionally) and take care of everything, prided my self on my independence, not needed help...so this really is hard.to ask for help, or to know I need help but not knowing what that help is.  It has been a little over 2 1/2 yrs since my dx and almost everyday I think I can't do this any more, I don't want to do this any more and wish desperatly that there was an end date...but my end date will be when I die...there is no end of treatment, no 5 yrs of AI's, no celebrating the last day of (fill in the blank). Its like being on a treadmill, exhausted and not being able to stop or get off. Yes I am grateful for all that I have, grateful that treatment is working well, grateful for wonderful insurance, grateful for my support system....but I am so tired of being grateful...I don't want to be grateful, I don't want to feel bad and guilty that I have help & support when so many others do not, I don't want to be positive, I don't want to be hopeful,  I don't want to be strong, I don't want to live scan to scan...I don't want to alone and lonely for the rest of my life. I want to have a melt down and be ok with that...

KAK

Drive-by to send hugs!!  Love you girls.

mumito

Melt away Ewb we all do it at one time or another.(((Hugs)))

EWB

for some reason I can't...maybe its a control thing, maybe I'm afraid where that will take me...to some dark ugly place and that scares the crap out of me....

cakeisgreat

Hiya kawee!  I ditto your post!

EWB--I'm a puny newbie and have not experienced anything in comparison yet, so I'm definitely not in the place to give any advice to anyone, LOL!  So, no good advice, sorry!  But I think you definitely summarized the stink (nice words) about this cancer that sends us to the moon and back mentally is that we can't control the outcome or dont know the outcome...if we'll be the "fortunate folks."  There is sure folks who get through treatment, even in stage IV, and live for 20 years or more (my onc told me of her patient recently who was stage IV for 20 years).  It's one thing to get through an operation or treatment, and then say, OK, it's done and now what's next in my life.  But being on a treadmill forever is enough to send anyone batty!  I wish I could figure out how to ignore the cancer and live in ignorance!  It's not fair!

Sending prayers and hugs (whichever you prefer) your way, and to all my new bc friends and sisters .