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I have to get this off my chest

MsGebby's picture
MsGebby
Posts: 659
Joined: Oct 2011

I hope my sisters don't JUMP on me for saying this but ....

Somehow, my cancer doesn't seem like it's worth talking about on this board.   I mean, I did not have chemo.  When reading the posts made by my sisters, it makes me feel that my cancer wasn't really cancer.  Is that strange?  Am i messed up for feeling this way?  I did the surgeries and then 38 rads.  That's it.  I am taking Tamoxifen (couldn't handle Arimidex) and then it's done.  For some reason I feel as though I don't belong among you all.  I feel blessed that I am not going through the trials and tribulations alot of you are, but I think maybe there should be a separate section for early stage BC.  *sigh*

I just needed to say this.  I've felt this way since the very beginning.

 

 

telecomjd
Posts: 66
Joined: Jan 2013

I also am early stage.  I did chemo, but am not doing rads.  I finish chemo tomorrow, and in about a month, I am on the Tamoxifen train.  I sometimes feel like I am not "cancer-y enough" either.  After all, apart from Tamoxifen, I will be done with this hell (for now, and hopefully forever) within six months of diagnosis.

I've only been on the board for a couple of months, but I know that my experience has helped a couple of people.  And, I recognize you from your posts and responses, and I assure you that you are helping folks as well.  If one response helps someone else seek treatment or demystifies this horrid process for someone else, it will be worth it.  You will have changed someone's life, and in that way changed the world.  

You are more than enough.  You are important.  Your experiences, stories, and support are changing lives.

Megan

MsGebby's picture
MsGebby
Posts: 659
Joined: Oct 2011

Thank YOU for your kind response to my post.  I don't know sometimes what gets into me.  But being stage 2 and not doing chemo (it was my choice) makes me feel like I am not in the big leagues.  Don't get me wrong, I don't want to be in THAT kind of big league.  I've said to my docs that "this was just a fluke ....  like tripping on air and breaking a toe".  In my heart, I know it won't come back.   I honestly feel that I can't offer much, if any advise, to others.  This board has given so much and I feel I can't really give it all back.  Maybe that's why I said what I said.  How can I be helpful when my experience is nowhere near that of my pink sisters?

 

Sorry ... don't mean to ramble.

telecomjd
Posts: 66
Joined: Jan 2013

... if we're not in the big leagues, we're in the minors.  And I hope we never get called up to the big leagues.  But, I am inspired by all of the women on this board who have been, as you are.  God bless them all!

Like the other posters have said, we're all linked by this wretched diagnosis.  It's a sisterhood.  We all help each other.

M

jennytwist
Posts: 753
Joined: Sep 2009

No matter how little or much we've all been through -we are all sisters forever now! You have been a huge part of so many of us here on the board - everytime, I think we can share with one another any part of this horrible thing that can help each other is so worth it! Your caring support and loving shine through - any time anyone hears that terrible "C" word, no matter stage 1 or 4 - anytime we can 'be there' for one another - it is worth it!  You never know who you 'touch' - Your experiences are so important to all of us - your encouragement to those still fighting is invaluable - some of us are much more 'tuned in' and can touch others  - YOU are one of those!

I tend to stay in the background - I'd much rather do the dishes than be out on the party floor - but I love all of you so very much and you'll never know what you all have meant and how very much your 'being here' has changed my life and made all the difference!

 much love,

 Jenny

sea60's picture
sea60
Posts: 2601
Joined: May 2010

We would never "jump" on you. Whether or not you went through chemo or rads...it doesn't take away that fateful day you heard you had cancer. Your fear was the SAME fear we all had. Your emotions through all this are the same emotions we have all shared at different points. Some have had more surgeries or treatments than others but we are all in it together. Cancer is horrible to us all and we all wish and hope for a cure. I'm happy you didn't have to go through chemo and my hope is that you never will!

We are a band of Sisters despite the stages or treatments.

Sending you my hugs and I enjoy reading your posts!

 

Sylvia

jamiegww's picture
jamiegww
Posts: 384
Joined: Dec 2009

You had breast cancer!  Whether you had chemo or not, you heard those awful words spoken....."you have cancer".  Like you said, you had surgeries and radiation.  I'm glad you didn't need chemo and I hope you never do need it but unless you've been scamming us all this time, you had cancer and like it or not you are part of this club none of us ever wanted to join.  We have helped you deal with some of your fears and you have helped us deal with ours.  Now that you have gotten this off your chest (how appropriate) get rid of that thought and don't ever think about it again.  You belong here just as much as the rest of us.

HUGS!!!  (just a funny note:  one time I accidentally typed the J instead of the H and I looked at it and thought "yeah right, I only have one left so I would have to at least take the S off the end of it but I changed it to an H rather than have to sign it "JUG!!!" but if you ever see me sign it JUGS please be kind and ignore it)

Jamie

Lynn Smith
Posts: 1265
Joined: Mar 2011

I know what you mean.I felt this way somewhat.You didnt have chemo but rads.I didn't have chemo or rads.So I really feel somewhat awkward.  

Sometimes when i post to a newbie I feel like I am bragging or repeating it over and over my good dx if you want to call it that,It's just my dx.We're all different. I remember my doctor telling me that a few times.I'm thankful but have wondered like you.I feel some might feel I'm bragging.I'm not.I'm thankful it was caught early. thankful it was in my older years(62) and Thankful I didn't have that dreaded chemo that so many have problems with.

I'm glad you have the guts to say this.I thought but couldn't say it. There are very few like  us on this Board. Those who didn't need chemo but rads and those who didn't need chemo or rads.But we all need tamoxifin or other pills to hopefully keep the beast from coming back. And really though we've all been dx with CANCER.No matter what the Stage. I guess I have to look at it that way. 

I know there are many like us out there but maybe they don't come on cancer survivor boards to talk about their journey.I've had my share of scares though along with my dx so I need to talk about it.

I truly think about our Pink Sisters everyday that are going through some hard times.  

Lynn Smith  

lintx's picture
lintx
Posts: 456
Joined: Sep 2012

It doesn't matter what treatment or the name of your cancer, but that's the way you got to this board.  We have  all shared so much more of our lives than cancer here. You belong here for many reasons.  I might like a recipe that you post!  I love your positive attitude and hope you have seen the last of cancer.  I'm sure you've grown fond of our mutual cyber friends, and it takes people like you to lend an ear to others in need.  Please don't disappear!  Hugs, Linda 

KathiM's picture
KathiM
Posts: 7948
Joined: Aug 2005

Ask about her/his treatment....

I would imagine you will find that 'all' she had was surgery (usually a mastectomy...lumpectomies were unhearof then) and radiation (one I talked to actually had mustard gas....lost her hair permanently...)

 

My point is, dearest, that you honor the legacy that those before you have left....I, for one, am overjoyed that the beast was vanquished by 'only' a few steps for you....

 

And, you have now added to the numbers that may one day change treatment to a milder one....instead of a shotgun (ACT chemo and rads), maybe a finely scoped rifle (rads and removal) will do the job and cut down on suffering!

You, my dear, are (hopefully) the wave of the future!!!  But every bit as much a part of the group as those of us who needed far more to deal with the devil cancer!!!

BIG hugs, Kathi

SIROD's picture
SIROD
Posts: 2204
Joined: Jun 2010

Mary,

People become confused about cancer but cancer is cancer.  A cell that lost it's programming and begins to replicate cells just like itself,  they don't have the ability to die like all cells must.  It doesn't matter what stage it is when it is found be it stage 0 to 4 it has the same abilities to go on and kill you.

There is target treatments which are the best one can have.  HER2NEU oncogene that has Herceptin, now perjeta allows women to live which before these drugs, they died of a vary aggressive cancer.  Those who have some hormonal parts to be ER or PR have the luxuary of taking those and for 18 years it was what kept my cancer in control.  Eventually it plays out.

The triple negative people are those with chemo only and I hope someday soon they figure out something for them also.  Soon too!

Radiation is a target treatment and it hits only what the radiation oncologist aims, the tumors to kill them or to alleviate pain.

You and everyone else who has been touched by breast cancer and even a caregiver to a family member or friend belong here just as those who are going through the rigors of hell.  Everyone's experience is unique and they have something to add.

Please don't feel you are less because you didn't have chemo, you had the drugs needed for your type of cancer.

Got to get to work, gentle hugs to you gal!

Doris

warrrior3
Posts: 91
Joined: Oct 2010

I often feel the exact same way. What makes it worse for me is that my younger sister Dx'd stage 2 grade 3 in 2006, advanced to stage IV with bone mets in 2008. I have been living her life, in my anxiety ridden mind, since before my stage 1 grade 1 Dx in Oct.2010.
I feel guilty because I was so relieved to be stage I. On the same note she feels guilty being the first in our family dx'd with BC, feels somewhat responsible for my BC.

aisling8's picture
aisling8
Posts: 1321
Joined: Feb 2010

a survivor is anyone who has heard the words "You have cancer." And that's me. And you. And the rest of gathered here.

We've probably all had to wait for test results and somehow deal with fear of the uknown. And that unites us because who else but a pink sister knows what it feels like to sit in the oncologist's office listening for the doctor's steps headed down the hallway to our little room. 

We are given treatment appropriate to our individual stage, grade, and type of tumor (s). Then we carry on doing the best we can with what we've got on any given day. Some days that's a lot. Other days, not so much.

You belong here as do I as does everyone. 

Just my two cents:)

xoxo

Victoria

MsGebby's picture
MsGebby
Posts: 659
Joined: Oct 2011

I didn't expect to see you all reply with so much feeling.   You are all so special.   Another reason I sometimes feel I don't belong.  But let's not go there.  If there was one thing I hoped for by sending this post out there ... it was to figure out if I was alone with my feelings.   It is now apparent that I am not.   Speaking up like this was hard for me because I did not wish to hurt anyone's feelings.  And you all showed me that we are all in this together.   Someone mentioned "denial".   Perhaps I am in a minimal way.  I take a pill to help ward off the beast from recurring.  I have to wonder how well this is going to work.  Something happened yesterday that makes say that.  I had an appointment with my endocrinologist.   I found out that my A1C has not come down even though I am on meds to do just that.  I couldn't believe what I heard.  My average blood sugar is 130.  That's according to my finger pricks twice a day.  That would equate to an A1C of 6.5.  It came back as 8.1 and my fasting number was 153!  I never seen that number especially before eating anything.   So with this information in my head, I am thinking "what good are these meds?"   Is Tamoxifen going to be the same?  Is it working?  AH man ....  I gotta stop thinking.

I just want to say THANK YOU for responding with such encouraging words to me ... AGAIN.  I don't know what I'd do without you all.

 

Smilles and hugs. ...

 

Mary

 

Gabe N Abby Mom's picture
Gabe N Abby Mom
Posts: 2415
Joined: Sep 2010

Mary, as I recall when you first joined this board you were pretty anxious  about your cancer and your treatment options.  That means this is the right place for you.

There are others who have to make that 'to chemo, or not to chemo' decision.  Your experience with how you came to your decision is invaluable.  Even though I have had lots of treatment, that is not something I have gone through.  We need  your advice and perspective.  That means this is the right place for you.

You take tamoxifen.  I do not.  You took armidex.  I did not.  We  need your advice and experience with tamoxifen and armidex.  That means this is the right place for you.

You did 38 rounds of rads.  Again, different from my rads.  We need your advice and experience.  That means this is the right place for you.

I hope I have made my point.  Your journey, your experience is not invalid because someone else has had more treatments or is a different stage or had a different journey.

As someone who is stage IV and had plenty of treatments, I need to know that there are people here at different stages and with different treatments.  It helps me not worry about my kids and their future quite so much.  It helps give me hope.

Hugs,

Linda

 

MsGebby's picture
MsGebby
Posts: 659
Joined: Oct 2011

Point well taken ... I care deeply for all of you ...  Linda, I can't tell you how much your words mean to me.  

 

"Cancer ... been there, beat that"

 

xoxo

Mary

camul's picture
camul
Posts: 2132
Joined: Dec 2010

Mary, I certainly do not feel that anyone with a cancer diagnosis doesn't belong here.  What I like about this board is that there are people in all stages, some are fortunate to fight this beast with less treatment, some of us need more.  I only wish I would have found it with my first go round when I was a stage I, as I really had no one to relate to.  At that point I was lost and could have saved so much anguish with all the support and knowledge that I have learned this time around from everyone here.

I thank Gagee (Diana) all the time for telling me to come here and just try it when I was diagnosed with stage IV.  Whether you are stage 0 or IV, we all experience the anxity and fears when new issues crop up, when dealing with people who just do not get what we are going through, when friends and family feel we should be the same as before cancer, when we have to go to appointments or scans, when starting radiation or new chemos, what to expect or what helps or does not help. 

Seriously, there is no right or wrong people here, we are all people who have a common need that have come together to fill that need, whether it be help and support for me today, or help and support that I can pay forward for someone tomorrow. 

Bottom line is this whole disease sucks, but knowledge and support are priceless. As long as we can be kind and positive for those with needs and beliefs that may different from ours!

Hope you stay on here, and if you need a break for a while take it, there will always be a need for this kind of forum for anyone with cancer.

Carol

GMcD
Posts: 132
Joined: Oct 2011

You were meant to be on this forum because as said before, "cancer is cancer".  You have posted such kind and caring words to our sisters and brothers who are in this fight.  I was dx'd as stage 1, had chemo and rads and am 3yrs out and grateful to be doing well and feel so bad for those who have not had it go as well for them so I know how you may feel, but you do belong here!!!  I as well as many others would miss you.

disneyfan2008
Posts: 5504
Joined: Oct 2010

I get you..I had survery and radiation. I never thought of being a survivor since I did not do all the chemo , lose my hair etc. My friend has skin cancer-surgery and she said I AM a survivor. ONLY then did I look up this site to see IF I am in fact I am a survivor!

 

I understand you totally....but I am sure many others of us who did not have chemo and AS BAD as many-but the fact is we HAD CANCER!

 

I had a totally hysterectomy due to my CANCER meds, Had breast surgery 3 mths ago (was only scar tissue from my cancer) and all OK...no cancer.

 

But still cancer is always lingering. I must say I am odd man out...I do not fret and worry about my mammos etc. I know some get so stressed out.  NO MIND YOU when i was told 3mths ago I had to go for biospy, then surgery i was scared-but each test I go in full force no fear. WHEN I get called back I am concerned of course...

 

So I can totally understand you...get you...connect

 

Denise

McMarty's picture
McMarty
Posts: 200
Joined: Nov 2012

I'm glad you are here!  I felt just like you do after my first diagnosis in 2004. 

But there are new people on here at all levels and stages with questions and concers.  Sometimes those of us with harder treatment and trial OVER answer the new ones and scare them 

They need you to remind them not to panic because there are MANY MANY MANY who go on and never see a return

AND

You all need people like us to remind you in all your 'going on with your life' be diligent with your check ups!

We are a TEAM!

CypressCynthia's picture
CypressCynthia
Posts: 4017
Joined: Oct 2009

I have never felt that you don't belong!  And I remember when you told us all about your JCP haircut.  I thought that was awesome and went and got one myself.  That really perked me up!

I feel we all belong!  All of us have unique experiences, but we are truly Kindreds in that we share the anxiety of a life-threatening and life-altering diagnosis.  There are times I feel just like you because I am such a longterm survivor and I have not suffered as many others have.   I definitely suffer from survivor's guilt (although I try my best not to feel this way), but I post in the hope that I can help someone, somewhere in some little way.  And I post because the camaraderie saves my soul.  I always so enjoy your posts!!!  Don't you dare go anywhere!!!

Tinkerwoman1
Posts: 13
Joined: Feb 2013

The past 5-6 months have been sureal; a blurr, I have to go back and check paperwork to remember when I was first diagnosed 10/2/2012. Lumpectomy and 33 rad treatments, followed by headaches that felt my head was cracking open. Headaches have subsided but now have hematoma's popping up...literally, I couldn't feel my lumps until they were pointed out on the ultrasound and the nurse had me push really hard to find them; the hematomas on the other hand are/were as big as eggs. Had one trained Thursday (about a 1/2 cup of brownish blood) and today another one the size of an egg with more reddish blood. Surgeon thinks maybe I'll get one more but maybe not.

During this process (and I call it a process) of going through the motions doing exactly what the doctor's told me, I think I was denying I had cancer. It didn't seem so bad; I wasn't sick enough compared to what I read on these posts, and felt guilty at all the attention I received....kindness, love and caring support like I didn't deserve any of this. The reality is finally setting in and my emotions are always at the surface. I had to continue to work during treatments which have taken a toll on my emotions; from the fatigue of radiation, fatigue from the stresses at work and then the doctor bills.

I've relied on my faith for my strength through this and my faith has sustained me but in my physical self I feel so alone. Isn't that the strangest comment even with all the support I received. I want to feel like me, normal me, but am coming to accept that my new normal may be what I am now. Seriously going to join a support group in addition to coming back to these posts. I've been away because I couldnt find the link again and then my PW didn't work. Well I found you all again and reset my password.

Love and blessings to all of you. Reading your posts provides additional strength and I know I am not alone. We all deal with difficulties differently but we support and respect each others feelings and comments.

 

Tinkerwoman1
Posts: 13
Joined: Feb 2013

I am so happy you are brave enough to be honest with your feelings. I kind of feel the same way. I didn't have chemo but did have the radiation that made me so tired and the headaches; oh the headaches. Now having hematoma's popping up the size of eggs. Reality has set in. I had cancer, it's gone but there are side effects from the treatments. I have to deal with them with the help and understanding from fellow survivors.

Tinkerwoman1
Posts: 13
Joined: Feb 2013

Deleted the post because it posted twice.

Double Whammy's picture
Double Whammy
Posts: 2336
Joined: Jun 2010

We have not had a recurrence and have gotten through difficult treatments and had to make difficult decisions, whether we had chemo or not.   I feel any of these experiences are a positive contribution to the newly diagnosed, frightened women who come here.  I think it's important for them to hear from those of us who are doing well.   I also think it's important that new members know that even though things are good, we do still worry.  And we do still come here for support of those worries because we know we are not dismissed and there's always someone here who understands.

And as for the "old" members, well I need to know how everyone is doing and lend my support for any difficulties they may be having.  I want those who are dealing with recurrences or other difficulties and side effects, to know we care.  It makes me feel good to gas up the pink bus for my dear friends whom I've become close to over these past 2 1/2 years. 

So please do continue to feel blessed and count as a blessing that you are here to lend your support to those who need it, no matter what they're experiencing.  We're all in this together.  I hope you'll stay on board.  You do belong here.

Hugs,

Suzanne

 

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