THEY HAVE NO IDEA!!

Stanzie,  The first 5 months of my diagnosis and treatment was inside that phone booth.  I just couldn't believe it was me that was going thru all of this.  It was like I was a spectator of my own life.  However, I was able to talk about it, especially to my aunt who was being treated for colon cancer at the same time.  I didn't feel the need to be "normal" for my kids as they are adults.  Welcome to the real world, kids.  I did tell them I would be fine tho, because in my heart I believed I would be fine.  At 5 months past diagnosis and surgery, you might need to talk to a professional about your feelings.  The American Cancer society has counselors that you can talk to.  Do you belong to a support group?  I don't know how you will find your new normal if you can't even bring yourself to think about your dx.  I went to an LE movement class for a couple months.  That was the best therapy mentally and physically for me.  All the women had breast cancer and we were able to share stories.  So it wasn't like a support group per se, but it was priceless in helping me reach a different level of acceptance.  I see you have posted a lot on BC.org but some in person exchanges might benefit you more.  ((((((  ))))))

Stanzie - I agree, I am not where I thought I would be a year after dx mentally or physically. I am very grateful to have found the cancer early and I know how blessed I have been throughout my surgeries and treatments with wonderful doctors and manageable SE's.  I am just so very sad and angry right now.  I have finally got to the point that I NEED Help and will be meeting with a therapist who specializes in PTSD.  I fought against it because I did not want to give BC anymore time in my life, I wanted to move on and be done but I have realized I cannot do that on my own.  I am also going to a Survivors Retreat at the end of August and I am truly looking forward to being in the presence of other women who can relate.   

It is pretty normal to get depressed and "stuck" after everything is done.  When our families and friends feel like they can put it behind them because we're "cured and whole" again, we're finally getting that moment to take a breath and start to process just what happened to us over the past 1-2 years.  We spent all that time making horrible decisions, getting thru pain, LE, chemo and all it's SEs and rads.  Who had time to process?  The other thing that is really normal is to feel depressed and abandoned once we are done.  No more dr. visits every week.  Who is taking care of us?  Who is protecting us from more cancer?  It's a very vulnerable time.  And that is exactly the time that our support network fails us.  Because THEY HAVE NO IDEA!  Seeing a therapist can be important.  Anti-depressants can be important.  Other survivors are a must to get to the other side where if we can't embrace our new normal at least we can acknowledge it. 

Stanzie- Everything you wrote on your post on the 9th was as if you had crawled inside my brain and dictated what I was feeling.  The feeling of being in a phone booth and not knowing how to deal with it all.  I had such misconceptions about the aftermath of a MX.  I thought, "Oh, it'll just be like a women who has had augmentation only they'll take the tissue out first.  No big deal."  (If it is like augmentation I cannot for the life of me understand why any women would voluntarily put themselves through that.)  I found, for me, that everything didn't hit me until my final recon surgery.  That's when I had to take a long hard look in the mirror and say, "This is my new reality".  It seemed so strange that it's harder now than right after the MX.  They talk about the stages of grief and I think I am definitely in stage 4-

During this time, you finally realize the true magnitude of your loss, and it depresses you. You may isolate yourself on purpose, reflect on things you did with your lost one, and focus on memories of the past. You may sense feelings of emptiness or despair. 

This article was referring to the loss of a loved one but I think the same applies to the loss of our old self, we are the loved one.

I think that even though we are lucky we had DCIS and it was caught early it is hard to feel joyful about being cured when you never felt sick.  The doctors told me the cancer was there but I never saw it or felt it.  I think you have a great suggestion recommending that caregivers read this thread.  Maybe if they saw that a lot of women are having the same issues it will validate our feelings.  Like o2bhealthy, I am considering seeing a counselor that was recommended to me that specializes in people dealing with health issues as I, too, feel stuck.  I don't want BC to define who I am but I don't think I can return to who I was, either.

mumayan- I'm so sorry you are having to go through additional worry.  It's hard when we are more concerned with how our feelings are going to affect those around us.  I am so grateful to have this site and be able to express everything here.  Good luck with your scans.  I hope it all turns out well for you.

Thank you to everyone that has posed. I have read everyone of your stories. As I sit here reading and crying at the same time. I decided I would share my story.

I went to my first surgery by myself. I had a friend drop me off at the hospital. My dd had a sick 2 yo and 6 yo at home and logistics prevented her from going.  My first surgery almost 10 years ago turned up nothing but calcification's so why worry about this.... right?

Three days later my BS called me at work to tell me I had BC. He said he was surprised, etc but wanted to meet with me. All I kept saying was I don't believe it. I took a friend that was a nurse with me so she could remember what I couldn't and hopefully understand any technical issues. My BS was very supportive and drew pictures and took a lot of time with me. I was grateful for his time.

I only told my dd in town that I had BC and between the 1st and 2nd surgery (they didn't have clear margins and also needed to do the lymph) I went to see my other dd. I just wanted to tell her in person. I hate to get bad news over the phone. So I flew to her house along with my brother who had already come to FL for a month vacation. I was exhausted but went anyway.... I felt I just needed to see her in person.

My dd and brother were with me for my 2nd surgery, in fact it was nice to have my db here for the month. It kept my mind off what was happening. I went back to work within 4 days of surgery. No one there knew what was going on. I finally had to tell my supervisor that I was going to apply for FML act because I would need to take a lot of dr app'ts. She was a BC survivor so she knew what I would be going thru. Still, the people at work didn't know, still don't know what I'm going thru.

I finally told my four sisters when I went to my dad's 90th B'day. I felt they should know just in case they wanted to be more informed for themselves. I live in FL and they live "up north" so we don't see much of each other. I keep in touch with 2 of them. One is a nurse so she always gets technical the other just talks... which is great

I don't tell anyone that doesn't need to know what is going on concerning the BC. I feel that it makes me different in their eyes. Somehow, they look at me, see me, treat me different. I'm not really different, it's just that I had this terrible thing growing inside me! I read a book by Depok Chopra some time back and he said something to the effect that It's a cultural thing.... I also don't tell people how old I am either... that way they can't treat me differently! LOL Not sure if that's working though.

Love you all.

Samsue,  It has to be hard carrying this so much on your own.   It is good to finally tell family.  But like most of you, as I called and told family, I was reassuring them that I would be ok.

Mumayan,  having a scan of any kind after BC dx always generates fear and worry.  We've already been "bitten" once.  I hope your scan comes back clear.  Did you have chemo?  Taking Tamox or AI?  I'm on Tamox and Onc orders a liver test every 6 months (but it is blood work, not a scan).  I also know from reading posts on this site, that chemo can really mess up your bodily systems.  Like thyroid.  I'm dealing with very low thyroid now and a very conservative PCP.   

My PS never asked if I'd considered augmentation before BC.  He just assumed I'd want to end up the same size I was before BC.  But I had considered augmentation.  I was very small breasted.  And I didn't want to stay the same size after mx.  So now with recon, I'm a more average size but they are not a thing a beauty like my tiny little natural breasts were.  Ya.  Recon is not like aug. and  unless you have your shirt up showing people all the time, they just don't know any better.  I have a friend who had augmentation a long time ago.  We have compared the procedures/results and she still doesn't get it.

For the most part, yes.  I'm happy with my recon.  I think it was worth the extra surgery.  I had tissue expanders and then implants.  Minimal surgery with that type of recon.  I could not make myself consider a flap surgery because of the extensive procedure using other parts of the body.  Too much disruption of the rest of me.  I like having a feminine shape.  With or without a bra.  I didn't like having tiny breasts before, so I knew going flat would not be a good option for me.

I have a swelling issue with my left foot courtesy of chemo.  I have to wear a toe cap and a support sock to keep it close to normal size.  Almost daily, someone asks what I did to my foot.  I used to say it was a swelling issue and they go on and on with medical advise.  Now I just say one little word.  Chemo.  Shuts them right up.  They don't want to come into our phone booth!

My  feet went up a whole shoe size after treatment I had to replace all my shoes. Firni are you able to exercise? I bought 2 sizes of runningshoes so I don't use that as an excuse not to workout.

I am 1 week out from a mastectomy, 2nd recurrence of DCIS in 2 years. Had a terrible argument with my SO last night. Remembered I hadn't been on this site since the new dx. The argument started because I said I am afraid to go for my one week follow-up. Not because of what they might do, like take the drainage tubes out. Rather because my experience at the VAMC was wretched!!! Now I'm afraid of the doctors and have no other option. One dr told me not to life my arm, same day another told me to get busy moving my arm. Then one of the drs told me that none of his patients ever had pain...What a whiner I must be. Finally, on the day of discharge, the dr told me in the AM that he would change my dressing. About 7 hours later when the orders were being discussed it was discovered that I was being sent home without dressing supplies, a nurse whispered and asked me if the dressing had been changed. The nurse sent me back to my room, stating that the dr would be up in about 30 minutes to change the dressing/show me how, since I'd been cleared to shower. About 2 hours later when the surgeron came to the room he told me I was not his only patient, as he had others in ICU/surgery. He told me I would have to help him change my dressing. When I said I wasn't ready to see the missing breast, my boyfriend said he would help him. Then the dr asked me where the dressing started. I told him I was asleep when it was put on. Needless to say I fild a complaint with the Patient Advocate.

My boyfriend has had something to do everyday, including a stop after I was discharged. My brothers and girlfriends have been coming in to stay so I wouldn't be alone. So when I said last night I was afraid to see these drs again, he told me he and a girlfriend had discussed this issue, AND I just needed to go to the appointment and not say anything. So I will, because I don't feel anyone has my back. I spent the time in the hospital trying to get 'normal' services, such as the meds I take everyday, a bathroom that didn't smell as if men had missed the pot, and even to have my vents cleaned so the bugs would stop falling on me. Now I'm having to explain and/or defend myself to the man who says he loves me.

Haven't heard from my mother (a 5yr survivor). But, I have my breastcancer friends. Thank God! 

DvinMsS- I just read your post and it just makes me so incredibly angry that you have been treated this way.  It's bad enough that you've had to go through this twice but to not be treated with the dignity you deserve is unacceptable.  Unfortunately, I hear more and more of this happening.  I had my surgeries at UMC in Tucson, and had some distressing experiences too, but nothing to the degree you are describing.  I am so sorry!

I know you don't know me but I live in Mesa and I would be happy to accompany you on any appointments for moral support (and to kick some ass if need be).  I would be happy to do that any time.  Feel free to PM me and I will tell you how to contact me.  Sometimes we just have to be each other's advocates if no one else will.  (((HUGS)))

Kate