HELP - No one truly understands

emamei

Hello Everyone.  It's been quite a while since I was on the forum.  I'm three years out since last treatment and so far, knock on wood, no recurrence.  In the past, this forum has been my life-line to staying strong and sane.

That said, I live with PTSD and depression and I am utterly haunted and terrified of a recurrence.  I am Triple Negative (or was) at initial diagnosis in 2010.  Stage 2, Grade 3, Triple Negative, Ductal carcinoma.  Lumpectomy of left breast with removal of 18 axillery lymph nodes (2 of which tested positive), followed by 8 rounds of dose-dense chemo, another surgery to further clear margins with the resulting pathology showing some cancer had survived chemo, which shocked the **** out of me as chemo nearly took me out, then an immediate mastectomy of my left breast followed by 6 weeks of radiation therapy.

My health has not been 100% since my cancer journey began.  Every time I get sick, fall, sustain and injury, my lymphedema worsens, etc., immediately I think - OMG, what if it's back?

I'm told this is normal.  I also know that for those of us who are Triple Negative, the fear of recurrence we live with haunts us.  At least if I had not been Triple Negative and could have been put on Tomxifan or something, I'd feel like the fight to keep the dragon at bay was ongoing and I'd be winning.

Instead, I feel like a living, walking time bomb ready to go off.

I'm 46, married for 14 years, have three daughters, ages 13, 12 & 10.  I'm so scared.

Since 2009 our family has lost 5 extended family members to cancer.  Currently, my husband's first cousin is living with a cancer recurence that over the year has begun to take greater hold, he's terminal and only 1 year younger than me.  His doctors was to try chemo again, but are not overly hopful.  We saw him at a family picnic this past spring and he looked great, full of energy, himself.  Then, we hadn''t seen him again until this Christmas Eve.  I've been in emotional shock for days and seeing him like he is now, has triggered some pretty major fears, nightmares, and depression.

I'm terrified beyond belief that he will lose his battle and that I'm next.

I can't ever get away from the hold Cancer has had on my life, on our lives.  I'm frozen in fear, unable to cope, and barely function some days.

I have a great psychiatrist and I am on anti-depressants, anti-anxiety meds, sleeping meds, etc.,  But the realty of this beast that is Cancer feels like it's breathing down my neck every day.

Does anyone here understand what I'm trying to say?  what I'm going through?  Please, anyone, if you do, help me figure out a way to cope with all this.

ppurdin

I do understand

I am 5and half years out and I do understand.exspecially when like you know someone that is losing the battle with the big C.I try to remind myself that worrie makes things worse it doesn't help.And I Pray about it a lot.I won't let Cancer take anything away from me that I can help.Good luck to you.Prayers going your way.

Double Whammy

ppurdin said:

I do understand

I am 5and half years out and I do understand.exspecially when like you know someone that is losing the battle with the big C.I try to remind myself that worrie makes things worse it doesn't help.And I Pray about it a lot.I won't let Cancer take anything away from me that I can help.Good luck to you.Prayers going your way.

You're doing the right things

Or at least is sounds like it.  I remember you well.  We both are from the 2010 era.  So sorry this is continuing to take a toll on you.  I have no advice, but I do understand.    I think most of us who still hang around here do understand, because we obviously dd not "just forget about it and go on with life" or we wouldn't be here at all. remaining connected with folks we've come to care about and who understand.   I hope you can find some peace.  I have learned that trying to make someone "get it" who refuses to can cause more anxiety than I need.  I have 2 friends who I NEVER use the C word when I'm with them.  I tried and tried back in 2010 when I was going through treatments and sick with fear to get them to understand.  Their solution was always to get me to go do something to take my mind off it.  When someone refuses to validate my feelings, by telling me not to feel them, well . . .   I did do things to "escape", mostly I buried myself in some good books.  If you're encountering situations where folks are not responsive, it might be a good idea to not share with them - at all.  They don't get it.  Come here, dear, we get it.  And keep on keeping on with seeking professional help.  PTSD is real.  No one gets that either, I bet.

Hugs,

Suzanne

emamei

Double Whammy said:

You're doing the right things

Or at least is sounds like it.  I remember you well.  We both are from the 2010 era.  So sorry this is continuing to take a toll on you.  I have no advice, but I do understand.    I think most of us who still hang around here do understand, because we obviously dd not "just forget about it and go on with life" or we wouldn't be here at all. remaining connected with folks we've come to care about and who understand.   I hope you can find some peace.  I have learned that trying to make someone "get it" who refuses to can cause more anxiety than I need.  I have 2 friends who I NEVER use the C word when I'm with them.  I tried and tried back in 2010 when I was going through treatments and sick with fear to get them to understand.  Their solution was always to get me to go do something to take my mind off it.  When someone refuses to validate my feelings, by telling me not to feel them, well . . .   I did do things to "escape", mostly I buried myself in some good books.  If you're encountering situations where folks are not responsive, it might be a good idea to not share with them - at all.  They don't get it.  Come here, dear, we get it.  And keep on keeping on with seeking professional help.  PTSD is real.  No one gets that either, I bet.

Hugs,

Suzanne

Thanks Suzanne.  I remember

Thanks Suzanne.  I remember you too!  You're right, PTSD is somthing that most don't get.  Unless you live with it, it's so foreign a concept, even for my husband.  Thank you for your continued support, it really means a lot.

marycurbelo1204

emamei said:

Thanks Suzanne.  I remember

Thanks Suzanne.  I remember you too!  You're right, PTSD is somthing that most don't get.  Unless you live with it, it's so foreign a concept, even for my husband.  Thank you for your continued support, it really means a lot.

Dear Emamei

How I understand you. I am going thru the same thing.  I'd never been sick in my life, ever and I'm 58.  One day, my beast of a dog decided it would be fun to knock me over.  He did and when I pushed him away, I noticed the lump in my breast (I love him more than ever cause he been my life saver). I went to doctors, had a horrible biopsy, 2 days later CANCER....  I was shocked, and I still think I am,.  I was dx Triple Negative, 2nd stage  lymph nodes clear.  It's been the toughest road of my life. I had a right mastectomy and had chemo.  For some reason or other, Onco does not recommend radiation.. Can anyone tell me why??? Anyway, I can't tell you it's going to get better.  I am waiting for a reacurrence.  Since October, I've been experiencing dizzy spells.  I wouldn't go to the doctor until after the holidays because I believe there will be bad news.  People always tell me I should be more positive and keep up hopes, and I really try but It's not easy.  The only thing that really helps me is prayers.  I lost my only son when he was 15 y/o.. I was devastated and thought I would die.  I prayed and prayed until I felt better and I'm doing the same now (believe me when I say that he hears me lots).  I'm pretty sure you will feel that too.  There really isn't anything we could do.  This site helped me alot too.  There are so many of us, here in this site, who understand exactly the way you feel.  They are perfect pink angels that will try to put your mind at ease and, believe me, will make it better.

Regards,

Mary-Orlando

RE

Hugs!

Hello emamei, I too remember you...I also clearly understand how you are feeling!  I took think cancer whenever there are persistant aches and pains....the key is to get to the doctor and get tests run to either find it early or regain your peace of mind by being assured there is no recurrence.  You are not crazy, you are afraid and it is truly understandable.   Most who have not walked in your shoes will not get why you would continue to be so concerned....they just cannot possilbly "get it".  It does sound like you are taking all the right steps to aide in regaining your life!  It is true (at least for me) that life cannot go back to what it was prior to cancer, but that does not mean you cannot enjoy like.  I have a mantra I say that helps me, "cancer cannot steal my joy", what that means to me is that it has got my breasts, gave me lymphedema, migraines and aches and pains that should be years away....but it had no right to my happiness and my sanity.  It is not easy, I have to work at it but it does help to remind myself that I can to some degree choose to be happy when the fear tries to creep back in.  Keep working at it emanei, you will get there.....and by the way even if it comes back that does not mean you will lose that battle...you beat it once so you can beat it again!  Enjoy your children, enjoy being with your family....draw strength from the every day things you are still here to revel in...you have earned the right to be happy!  Sending cyber hugs your way, I hope you can feel them! 

 

RE

cati0314

I understand

Hi, I truly understand.  Your letter could have been written by me.  I was diagnosed in December 2009.  Had neoadjuvent chemo, bilateral, radiation.  Stage 2B, grade 3, ER-PR+HER2-  Tumor was 6.2 cm.  No lymph nodes involved. clear margins.  But my life is completely taken over by the fear of recurrence.  I feel that it will come back and I will die a horrible death.  I know of many others who were worse off and live wonderful lives.  I too am on antidepressents and anti anxiety medication daily.  I also drink.  I wish that I wasn't so obsessed.  My life is a mess.  All I can say is that if we make it we'll wonder why we inflicted so much suffering on ourselves.  It is definitely PTSD.

 

Only best wishes,

Sharon

joannstar

I so understand

I am 4 years out from surgery (Stage 1, Grade 3, TN, no nodes). One thing that my onc told me is that after 3 years, our chance of recurrance lowers to be like others. Small relief. Every ache and pain worries me, but also gets me to the doctor to be checked.

I hope you can find some peace in your journey.

 

Hugs,

JoAnn

 

disneyfan2008

hugs
 
Denise

hugs

 

Denise

button2

I think you put into words so

I think you put into words so well how many of us feel. It takes a lot of strength to be so honest about your fears. Sometimes I think I hide behind a tough exterior with people telling me how "strong" I am. My only advice to you is to try not to compare yourself with others too much. I don't think there are many families whose lives haven't been touched by cancer. (My aunt died of leukemia, my cousin has it now, my grandfather died of colon cancer) One thing I have heard about triple negative is that although hard to cure,once gone, it recurs less often than estrogen positive cancers. Since you are three years out, maybe you can start to be more hopeful. I'm a 2 year survivor and sometimes I'm scared to let go. Like, if I think I'm "cured" the worst thing might happen. What helps me is thinking "What if I live to be 80?" Will it be worth it to have spent all my years in depression and worry? So I try to enjoy life even though things are so different now. Hugs and hope for a good 2015 for us all.....Anna

GlowMore

How to Cope?

I think if there was a Magic Button to push or a Magic Patch to stick on that would make us able to Cope with all the many Fears we are hit with from the moment we know we have Breast Cancer...probably a lot of us would be afraid to push it or stick it on....because  "What If" ?    You know what I mean..........it is like we almost go Insane with all of it.........

WHY MUST WE HAVE THIS HAPPEN TO US??  WHY?  WHY?  WHY?  ...........well....that is a question I can't answer and neither can you. 

 

   What we do know is that it has happened...and we have to deal with it as best we can.   I have chosen to get rid of the Fear since it clouded my mind and was not worth living with......and then I decided to try to live in the NOW and not to worry about tomorrow....and then I decided to Thank God Each Day for all my Blessings and to be Grateful for all the small good things that came along....(like when I finally got my taste buds back and enjoyed my hershey bars again....for some strange reason the chemo made me HATE chocolate).  Or like being grateful when I could once more walk without a cane after chemo without being afraid of falling.   All that fun stuff.  Perhaps because I was a Widow and had no Familly to help me I was able to FOCUS on the BATTLE....without any outside forces around me.  Noone to feel sorry for me.  No one to lean on?  And so I found that I had to lean on God and that is what I did and am doing....only now at 12 years out it is easier of course.  (Until the next test is due).   Hang in There....Sending Love and Prayers for Strength **  Glo 

 

 

 

 

 

sbmly53

Maria,

I also remember you. i completely understand. I felt like BC was the boogie man, waiting to pounce on me at any given moment. 

I just passed my 5 yr mark, phew, but I still have that " waiting for the other shoe to drop" kind of feeling. It is not constant, but occasional.

 

with all the family members having cancer, it is much closer to you. A constant reminder. You are doing all the right things, keep on doing them. Tell your doctor how deeply affected you are, perhaps an increase in meds? And keep coming here, you know you will always be supported.

 

hugs,

 

Sue

alabama_survivor

QI was totally blimsided by

QI was totally blimsided by my diagnosis--stage 3c triple negative on the left side,  and IDCIS on the right side.  Recommended treatment was 5 months of very aggressive chemo--4dd biweekly a/c treqtments, followed by 12 weekly Taxol. Although I had very little nausea, low bloodcounts made me super weak, and I had very little energy for nything. In September,  I learned that my sister had a different kind of cancer and would  be going through I am going through.  I had been through chemo, will be having double mastectomy on January 15, followed by 28 radiation treatments a month after surgery. My sister did radiation and she will have surgery January 6. Then I founc out that my brother's colon cancer that he had lasr October, metastasized to his pancreas and liver. 

None of this is a surprise to God. God knew everything that was going to happen before it did. God was already there. Despite adversity, I can always find something to be thankful for.  If you ever reach a point where you can learn to find things to be thankful for, and you can sstart praising Ged DESPITE the adversity,  I guarantee that your heart will start to heal.

gagee

seems like no matter ..stage 1 or stage 4 ...FEAR..

FEAR of reoccurence. No matter the type or degree of cancer. The fear is there. We may hide from it at times but then there it is again. I just recieved my results of latest mammo. Thank God ...it said you are clear of cancer today. Make sure you keep your appt. for the next year. Relief on one hand and then the fear .... will the next letter be good also. I do pray for me but also for all of you. I know God has helped me though this and many other things in my life.  My prayers are with you and hope you have a good and healthy 2015.

Diana  

Heatherbelle

RE said:

Hugs!

Hello emamei, I too remember you...I also clearly understand how you are feeling!  I took think cancer whenever there are persistant aches and pains....the key is to get to the doctor and get tests run to either find it early or regain your peace of mind by being assured there is no recurrence.  You are not crazy, you are afraid and it is truly understandable.   Most who have not walked in your shoes will not get why you would continue to be so concerned....they just cannot possilbly "get it".  It does sound like you are taking all the right steps to aide in regaining your life!  It is true (at least for me) that life cannot go back to what it was prior to cancer, but that does not mean you cannot enjoy like.  I have a mantra I say that helps me, "cancer cannot steal my joy", what that means to me is that it has got my breasts, gave me lymphedema, migraines and aches and pains that should be years away....but it had no right to my happiness and my sanity.  It is not easy, I have to work at it but it does help to remind myself that I can to some degree choose to be happy when the fear tries to creep back in.  Keep working at it emanei, you will get there.....and by the way even if it comes back that does not mean you will lose that battle...you beat it once so you can beat it again!  Enjoy your children, enjoy being with your family....draw strength from the every day things you are still here to revel in...you have earned the right to be happy!  Sending cyber hugs your way, I hope you can feel them! 

 

RE

RE- you always have the exact right things to say to soothe us love you! 

And I too know exactly what you mean. It did get easier for me over time, now that I actually have a recurrence , well some days it's really hard not to break down. One silver lining to having such a strong fear of it coming back was I became extremely tuned in to my body. The pains in my arm and hand from neuropathy got worse, and I was getting new, different pains. I went to the Dr right away because I knew something wasn't right. And like my first time, my recurrence was caught early, and I know I'm gonna beat it again.

Xoxo, 

heatherbelle

MrsBob

Hi! I too know the feeling. I

Hi! I too know the feeling. I sometimes feel like I have survivors guilt. I lost a dear friend last year. I have two others who are not doing well. It looms over me every day. My tumor markers decided to spike last fall. As of today it's down to 13. My spine and hip ache where I have a spot and a lesion that are supposed to be stable. Arimidex is not good but it's keeping my cancer under control so I will keep taking it. I too feel like my cancer is a time bomb waiting to go off.

However, being on here and hearing from others helps so much. 

 

RE

Heatherbelle said:

RE- you always have the exact right things to say to soothe us love you! 

And I too know exactly what you mean. It did get easier for me over time, now that I actually have a recurrence , well some days it's really hard not to break down. One silver lining to having such a strong fear of it coming back was I became extremely tuned in to my body. The pains in my arm and hand from neuropathy got worse, and I was getting new, different pains. I went to the Dr right away because I knew something wasn't right. And like my first time, my recurrence was caught early, and I know I'm gonna beat it again.

Xoxo, 

heatherbelle

:-)

Love you to Heather, good too see you!!!

tasha_111

MrsBob said:

Hi! I too know the feeling. I

Hi! I too know the feeling. I sometimes feel like I have survivors guilt. I lost a dear friend last year. I have two others who are not doing well. It looms over me every day. My tumor markers decided to spike last fall. As of today it's down to 13. My spine and hip ache where I have a spot and a lesion that are supposed to be stable. Arimidex is not good but it's keeping my cancer under control so I will keep taking it. I too feel like my cancer is a time bomb waiting to go off.

However, being on here and hearing from others helps so much. 

 

After my first dx in 2007, I was always waiting for the 'other shoe to drop' I think we all are, it is only normal.  When it happened I was devastated, but now I am living with st 4 and pretty much ignoring it.  It does not deserve to be taking up any more of my time or thoughts.  

Good luck hun, we all hope it will never return.  xx