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Why was I stronger DURING treatment than I am now?

Rabbit43
Rabbit43 Member Posts: 121

Hi...I am new to this site and am looking for some much-needed help. I was diagnosed with BC last July, had a lumpectomy, 4 rounds of chemo., 6 weeks of radiation and am now on tamoxifen. Emotionally, I am worse now than ever! I dug deep and handled the diagnosis and all the treatment better than I would have ever expected. With my husband's help, I took care of our 5 kids and was able to manage all of my home responsibilities, but now I can't get through a day without crying. I am short tempered and my emotions are all over the place. At times, I feel out of control. Sometimes I am panicked about a recurrence and desperate to figure out how I got it in the first place. At other times I am guilt-ridden about bringing this into my family or mad that it happened, and sometimes I just can't believe it happened at all. I am all over the place! I want to find that strong women who kicked ass during treatment, but I don't know where she is. Is this normal? Can anyone relate? And if so, what did you do to help yourself and when will this get better? Thank you for any advice.

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Comments

  • arenee98
    arenee98 Member Posts: 5
    edited April 2012

    I'm not sure how sound my advice is because I am about at the same place you are  (I've finished chemo and surgery and now am on Tamoxifen), but it sounds like you are going through the 5 stages of grief. I've heard from others that it is easy to go into survival mode while in treatment...you do what you've got to do to get through...and then when things settle down the whole thing hits you.  It's very common to swing between the 5 stages of grief; you don't necessarily go through them in order. en.wikipedia.org/wiki/K%C3%BCbler-Ross_model

    In other words,  I think you are very normal. :) 

  • moderators
    moderators Posts: 7,884
    edited April 2012

    Hi Rabbit,

    Totally agree with arenee98 -- sounds normal to us!

    You are experiencing what a lot of women experience after treatment; while we obviously can't say what exactly is going on, you may find some help on the main Breastcancer.org site on the Depression page and also the Post-Traumatic Stress Disorder page. There are some really helpful tips there.

    Hope this helps! And please come back and keep us posted on how you're doing!

    --The Mods

  • [Deleted User]
    [Deleted User] Member Posts: 1,017
    edited August 2012

    Rabbitt, Arenee, I don't know if it will be much help, but almost every woman who posts on BCO can understand, empathasize, and sympathsize with what you're experiencing.

    It is one of those KNOWN STAGES of recovering from initial treatments for breast cancer that doesn't (yet) get much talked about.  The SHOCK of being diagnosed, the terror of treatments, harnassing every ounce of physical and emotional energy we have to get through those treatments - and then..WHAT?????

    What now???  How do I get my life back? The doctors are so happy you are through the initial treatment, your family ( probably?) thinks "you're done" - now we can get back to "normal" - and meanwhile you have ALL these feelings just raging through you.

    I think the best thing you can do, is to go to where you had the treatments, and TALK WITH a good counselor, social worker, therapist, and have that person confirm how EXPECTED what you are experiencing is.  BE GENTLE WITH YOURSELF.  The "hard work" of initail treatment may be over, BUT ( Big But) the real, real, real healing is just beginning.

    BE GENTLE WITH YOURSELF.

  • GracieChase
    GracieChase Member Posts: 1
    edited April 2012

    Wow, it must be fate that I logged in when I did. Rabbit, I am almost on the same timeline as you--diagnosed in August, surgery in November, chemo  4 TC from Dec-Feb and now on Tamoxifen. (Also still debating whether to have ALND as I don't want rads). This week has been terrible, as has the whole month of April--the cruelest month they say--my warrior has disappeared too and I feel like I cannot stop imaging that I am dying and have cancer everywhere. This is probably all absurd, and I know it MOST of the time. But almost every day I have a crying jag, too, and feel like I won't get back to normal ever. So maybe we are "normal" for this experience?

  • [Deleted User]
    [Deleted User] Member Posts: 1,017
    edited April 2012

    Gracie

    "my warrior has disappeared"  -  what a perfect way to explain it.  We NEEDED that "warrior spirit" to get through the initial SHOCK of diagnosis, and treatment.

    NOW, we have to harness that Gentle Loving Healing Spirit we so freely extend to all those we love when they need it, and give it to ourselves.  That's about it.  Time to heal, and healing takes time.

    "the cruelest month" - yup - AND, "April showers bring May flowers."

    Be well, be gentle with yourself, give yourself TIME to heal.

  • Letlet
    Letlet Member Posts: 55
    edited April 2012

    This was me last year. After surgery, chemo, RT...I was finally on JUST Herceptin and Tamox then I went back to work from being out for 9 months. It was a horrible, horrible time for me, I had a plan during treatment, which was TO GET THROUGH IT. After all that was done, I felt like a ship lost in the middle of the sea. I remember sitting in my desk, looking at my pens that I left 9 months ago, they were exactly where they were yet I had gone through hell. I realized I needed help when I caught myself crying in the bus. I was like, what now? what's next? what do I want to do with the rest of my life now?

    This was 10 months ago and life has been good, I have also realized that perhaps some of that may have been the Tamoxifen because once I stopped it, immediately began to feel better, more positive. But yes, that time was rough for me too.

  • camillegal
    camillegal Member Posts: 15,711
    edited April 2012

    OK Time for one of my theories-----when all is being done tests, biopsies, operstions, chemo, rads,we are in constant communication with Dr. and nurses and being cared for--everything usually oes on every week where u feel kind of safe because any kind of question u ave or whatever u have someone to ask immediately and u'r concentration is a fight. But u'r surrounded by other patients that know how u feel and it is a comfort. U look for the day it's going to end--and when it does it almost feels like u'r alone and the unsettling feeling like did they get it all.? And U'r not seeing this magnificent team that got u thru it like before--u were always given an app'tment so u knew u'r be taken care of. Then it goes away-u don't see anyone as often and u'r livin with what u've been thru alone. So anither one of my theories, right or wrong sounds good to me.

  • [Deleted User]
    [Deleted User] Member Posts: 1,017
    edited August 2012

    camillegal

    sounds VERY GOOD to me..hadn't thought of it from that perspective - thanks.

  • camillegal
    camillegal Member Posts: 15,711
    edited April 2012

    Oh sunflower no one usually thinks like I do--I don't mean i'm right I just honestly think goofier than most Besides i realy have no knowledge of Cancer at all I just have theories. hahaha.

  • dlb823
    dlb823 Member Posts: 2,701
    edited April 2012

    Rabbit, it sounds totally normal to me, too.  There actually is some sort of psychological process that happens to us when we're first dx'd, where we compartmentalize a lot of the anger and fear, so that we can deal with the necessary treatment.  Then, once that structure is gone, all of those suppressed emotions need to come out.

    You're still that strong woman, Rabbit.  You're just dealing with almost a year's worth of suppressed emotions that need to be handled.  Plus, the Tamoxifen is messing with your hormones.

    One of the things that helped me the most at the point you're at now is to start getting out and walking for at least an hour a day.  It gave me alone time to think about and process what I'd been through, as well as knowing I was doing something to help fight a recurrence (which exercise has been proven to do), and also creating much-needed endorphines.  It may not be easy to find the time to do that if your 5 kids are still small, but if you can figure out a way, I think it will help you, too.  In fact, even though I'm 4 years out from my dx, I still notice that I get unhappy and easily frustrated when I don't get enough outdoor exercise.  It really is a miracle "drug" for me.   (((Hugs)))   Deanna 

  • bdavis
    bdavis Member Posts: 3,192
    edited April 2012

    I felt that as well... I was diagnosed Nov 2010, lumpectomy Dec 2010, chemo Jan-May 2011, BMX July 2011 and continued recon til Nov 2011... then Tammy started Dec 2011... THEN I got depressed. I think it is absolutley the NOW WHAT? feeling. It did pass... But I think what helped was my coming here and "talking" with other women and also telling my MO that a 6 months gap between visits was not going to fly with me... Also, I do feel I have done everything I could have done, and I have faith in that.

  • ruthbru
    ruthbru Member Posts: 46,908
    edited April 2012

    Everybody is right. First you are in shock, then you are in the 'fight mode' and it is the whole center of your life. And then active treatment is done and it feels like it's, "Goodbye and good luck." and it is really hard because everyone you know is glad that you are 'done' and wants to move on to. Finding other people who have 'been there/done that'...here, a local support group and/or informally with friends who have been through it REALLY helps. Exercise REALLY helps too. Also keeping active and busy and filling your life with things you enjoy and are meaningful doesn't give you as much time to think about it. And someday you will be suprised to find that you haven't even thought about cancer at all that day or even week! I think checkup time is always, and will always, be really hard....but most of the rest of the time I don't think about it that much any more. Hang in there! Ruth

  • Rabbit43
    Rabbit43 Member Posts: 121
    edited April 2012

    Friends...WOW! I wish I had reached out earlier. I can't believe how much better I feel just from reading each and every one of your responses. Just knowing this is normal was a huge relief, but the thoughts you shared and your kindness, as well as the practical things I can do to feel better about things helped me more than any of you will ever know. I have read and re-read the replies to my post and feel stronger each time. Thank you all for "paying it forward". I will do the same whenever I can. I am very grateful to each of you and appreciate you taking the time to help me.

  • Kate33
    Kate33 Member Posts: 1,936
    edited April 2012

    Rabbit-  Like all the others have said it's all very normal.  When we're going through treatment we're running on a kind of adrenaline.  It's when we're all done with treatment that we truly start processing the emotional aspect of BC.  I post on a thread where we talk about this.  It's called "A great saying about depression".  Don't let the title throw you- it's not really about depression but about learning to move forward.  It's been really helpful to be able to post there about everything.  Sometimes our families think it's time for us to move on but we may not be there, yet.  So it's nice to have a place to share those thoughts and feelings and know we are understood.

    http://community.breastcancer.org/forum/102/topic/759882?page=114#idx_3402 

  • Elizabeth1889
    Elizabeth1889 Member Posts: 509
    edited April 2012

    It is so good to know that we are not alone although I would not wish this emotional pain on anyone. My treatment phase was actually a good time of my life. I felt strong and powerful and there were wonderfully competent and caring professionals around me all the time. Now, I just take arimidex and see the MO and RO every six months. I feel scared and lost. I see a therapist and I am in a support group. Neither is working that well for me. Exercising does help. I hope time will help too.

  • [Deleted User]
    [Deleted User] Member Posts: 1,017
    edited August 2012

    Rabbitt43

    You last post made me cry.  I KNOW I speak for every woman who posts, we would rather be ANYPLACE than in a place giving advice, from experience, about breast cancer - AND, I think it is honestly the only way any one of us survives.  Maybe not on a website, but by seeking support from other women, and then giving support when we can.  While I'll leave to my wonderful doctors, all the medical issues, I turn to my local support group for everything else.Sometimes something as simple as just going to a friends house to sit on her porch, with a friend who I know understands so completely what I'm dealing with.

    ESPECIALLY, at just the place you, Rabbit43 are now, asking that WHAT NEXT? question - now, how do I THRIVE as a bc survivor.

    Can't remember if anyone on this thread as ( yet) mentioned the book AntiCancer:A New Way of Life by David Servan-Schreiber.  I think it's the perfect time for you to read it, if you haven't.  There are many ways we can still help ourselves, especially, at the end of "active" treatment, being gentle, gentle, gentle with yourself.  You are most definitely not alone.

  • Galsal
    Galsal Member Posts: 754
    edited April 2012

    Thank you all, for sharing your feelings and thoughts.

  • ruthbru
    ruthbru Member Posts: 46,908
    edited April 2012

    and you can MAKE some good things come out of this experience: if you can help someone else who feels scared and alone (more paying it backwards than forwards), giving them practical advice, a shoulder to cry on, and the 'if she could do it, I can too' example, if you more appreciate the small things in life, do more of the big things, if you can not sweat the annoying things as much......

  • ruthbru
    ruthbru Member Posts: 46,908
    edited April 2012

    I just thought of another good thing: 'meeting' all of you! Smile

    Seriously. It is just amazing to me that some of my most meaningful and supportive friendships (with women from all over the worldm whom I never would have even crossed paths with otherwise) have come out of one of the worst exeriences of my life.

  • Nordy
    Nordy Member Posts: 1,106
    edited April 2012

    Rabbit - like all these ladies have said - you are so normal! Going through treatment becomes your job! You have a focus and all your friends and family have circled around you to support you. Then treatment ends. You no longer see your doctor once a week or every other week. Those that came out of the woodwork to support you slowly fade into the background. It is not intentional, but in their eyes the crisis is over, even though you are still living with the effects that breast cancer has had on you. It is likely that you are still very tired - it is said that the fatigue lasts equal to the length of time you were in treatment - so if between chemo, surgery and rads, you were being treated for 9 months, you can expect to be tired for that long after! You are also still living with the stress and emotional effects of cancer. In the beginning, I worried every single day about whether or not the cancer would come back. That in itself is exhausting. It gets much less over time, although I think most of us will say that it never completely goes away - there is always a little bit of fear. Everyone has their ways of working through this. I agree that a counselor that is experienced in working with cancer patients can help tremendously. Also, is there something that you LOVE to do that helps you destress? I have found that exercise is a great stress reliever for me. During treatment and right after, it was all I could do to just take a walk everyday. But over the years I have gone back to all the activities I enjoyed as a kid, and added a few more! For me, it is a good stress relief, but some people find that bread making or sewing work to destress. Try to find something that you love, that gives your mind some time away from cancer. And then, remember that we are all here sending you hugs and circling you with warmth and support from a distance. It will be okay. (((((((hugs)))))))

  • mdg
    mdg Member Posts: 1,468
    edited April 2012

    I think when you are going through treatment you are just so focused on everything you have to do to get through it and then when you are done you are left with the reality of it all.  I was dx in Dec 2010 and I finally decided to go on some medication to help in October of last year.  I am now on effexor.  I also have made a lot of life changes to diminsh stress.  I did start doing yoga and I am back into running a lot.  I always exercised but I think both of these really help with stress relief and clearing my head.  I was taking xanax at night to sleep but in the past 10 days I have finally been able to stop taking it at night.  I have been taking xanax at night for over a year so this is huge. 

  • [Deleted User]
    [Deleted User] Member Posts: 1,017
    edited August 2012

    CONGRATULATIONS, mdg

    I was too scared to use another prescription to try to sleep, the early days on Arimidex were horrendous, so I used the herbal "valerian root" which wasn't as powerful as the prescription meds, but really helped.  Just a few drops in wate.

  • TwoHobbies
    TwoHobbies Member Posts: 1,532
    edited April 2012

    Rabbit, absolutely my story too.  My doctor said you either fall apart in his office on the initial visit or 6 months later.  I'm the six months later girl.  What I didn't anticipate is I got over the sadness  but now I'm in the angry stage more than a year after diagnosis and surgery.  I had forgotten that anger is one of the stages of loss until this week.  I'm angry that cancer has been such a burden and messed up my life.  The old sane me who could tell myself its a temporary state seems to have vanished.  I get angry and short-tempered, and then I'll get depressed because there's no where to release my anger.  Then I'll have a couple of good days and then I'm angry again.   

    I'm still not exactly sure what to do with it or how to get through it, but recognizing it is a normal stage has helped a little.  I also noticed that venting really helps a lot, but I worry that those I vent to don't want me to!  I started doing yoga on cable this week and I'm hoping it can really unblock my chakras like the instructor says, whatever those are.  

  • wildrumara
    wildrumara Member Posts: 109
    edited April 2012

    Wow!  Thanks!  I really needed to read these posts....perfect timing.  I can't wait for the day when I wake up and the first thing I think about is not CANCER!!!   

  • eulabt
    eulabt Member Posts: 29
    edited April 2012

    I totally felt the same way last year at this time. It is so normal. You don't have a chance to sit down and think while you are so busy going through the treatment, then boom, you are done and life goes on. The problem is that our lives are never the same after BC and it is really a hard phase to go through. I think outsiders try to understand, but it is impossible to understand unless you have gone through it. The feelings will pass, it just takes time. Hugs.

  • Rabbit43
    Rabbit43 Member Posts: 121
    edited April 2012

    Thanks again to all of you for the incredibly helpful comments. I guess we are in "fight" mode when we are battling BC. Nordy, you hit the nail on the head. We are (hopefully) armed with an excellent medical team, supportive and loving family and friends. We look forward to the end of treatment and getting back to normal. Then treatment ends, our hair grows back, and everyone thinks "woo-hoo, it's over". That's how I thought it would be, but that couldn't be farther from the truth. Whoever posted that this is when the REAL work starts was right. The thing that makes it hard is that the people who were most helpful (my husband, kids, friends and extended family) with love and support, meals, visits, e-mails, calls and texts now think I'm just fine and don't need anything anymore. Boy, are they wrong!

    Eublabt, you are right. It is impossible to understand this unless you have gone through it. My brother was diagnosed with stage C2 colon cancer almost 11 years ago and it has been a long road for him. Today he is cancer-free and living life to the fullest. I fell apart to him the other day and he told me that I need to get together with a group of women who have been through it and who will understand how I am feeling. He assured me that it would help and he was so right. You all totally understand and I just wish we could all be in the same room discussing all of these things in person! Even though that's not possible, I want you all to know how much I appreciate you.

    SunflowersMA...thank you for the book recommendation. I am going to get it and am sure it will help. I will let you know.

  • CinD
    CinD Member Posts: 13
    edited April 2012

    Rabbit, you sound very normal to me too!  You had a lot happen to you and now the reality of it all is sinking in.  Besides the shock of the diagnosis, you were subjected to operations, chemicals and radiation.  That's enough to mess with the strongest among us!  And, if you're like me, chemo threw me into menopause.  As others have said, Tamoxifen plays with our hormones. Your body and mind have been overloaded, so it will take some time to adjust.

    Like you, I wanted to know how I got cancer in the first place.  I blamed myself, did I bring this on myself with the weekend partying in my youth or maybe the sugar in the chocolate I love?  I finally gave myself a break.  I'm not perfect and do things I probably shouldn't, but that's just part of being human.  Getting cancer is not our fault and the chances are none of us will ever know why it happened to us.  

    You said that at times you feel out of control.  This was a problem for me too.  I felt I couldn't control or trust my body anymore.  It made me feel helpless.  I had been given some anti-anxiety meds and could have gone that route, but instead I chose a more natural approach.  The best thing I could do for myself was to do the things that I knew would help prevent recurrence, but also allow myself the leeway to enjoy life and not feel guilty when I do something like have that bar of sugary chocolate. I feel the pleasure of an occasional indulgence is much better for us than the stress we put on ourselves by trying to avoid everything that has been linked to cancer.

    Like others have said, exercise is so important.  It helps mentally and physically, and I've read that walking 30 minutes a day may cut recurrence rates by 40%. I have a treadmill set up in the spare room, and I watch favorite half-hour comedies while walking.  Laughter is great for us too.  Plus, and this is my dirty little secret, a couple of times a week I do Richard Simmons' aerobic tapes. Stop laughing everyone!  I've always loved to dance and don't get the chance anymore, so these are uplifting to me and they get my heartrate up.  I've also returned to yoga, which is great in so many ways.

    Finally, what has really helped me mentally is listing to the CD "Healing Meditation" by Kelly Howell.  I realize this isn't for everyone, but I can't say enough good things about it.  The 30-minute guided meditation on the CD tells us that we can heal our bodies with our mind as we go through different healing visualizations.  It's very calming, and if I use it before going to bed, I sleep better and don't awake at 2:00 AM with cancer on my mind, as I used to do.  I've used the CD for the past few months, a few times per week, and I'm sleeping better and am less anxious during the day.  I want to try other healing meditation tapes, but I like this one so much that I'm reluctant to try others.  If anyone reading this has any suggestions of other good ones, please let me know.

    Take care Rabbit and everyone else struggling.  It will get better.  Do the things that will make you feel better, do the things proven to help prevent recurrence, and give yourself time.

    Cindy

  • Vicks1960
    Vicks1960 Member Posts: 393
    edited April 2012

    Rabbit,

    I really don't have much to add to what the other wonderful gals have already said.  I do suggest you contact either your local treatment center or contact the American Cancer Society, to see if there are any support groups in your area that you may be able to participate with.  I too have gone through the phase of while sitting in the our home office, just having the tears start flowing.  My husband has figured out, "Oh, it's one of those times", He has been a great support thru this journey!!!

    I am only about 6 months out from diagnosis, but it is getting easier to deal with.....Get to do what I call the MD SHUFFLE every 6 months for the next......however long they say... 

    When you feel the need to vent, we are here to facilitate it, either on the open post or in a PM.

    Good luck.....   {{{{{{{{{{{HUGS & PRAYERS FOR YOU}}}}}}}}}}

  • TectonicShift
    TectonicShift Member Posts: 102
    edited March 2013

    My onc told me it's extremely common to have a kind of breakdown or freak out after treatment is all over. He said it all kind of catches up with you and a lot of people feel most fear and anxiety after they are done with treatment and are just sitting waiting to see if it comes back. He told me to expect it. He also told me it will pass eventually.

  • CJRT
    CJRT Member Posts: 221
    edited April 2012

    Thank you all for your words and for normalizing what I, like Rabbit, have been feeling.  I stumbled upon this thread at the exact time I needed it.  I was diagnosed back in July when my son was only 7 weeks old and life has been a whirlwind of surgeries and chemo since.  Things were finally settling down to just an exchange surgery, Tamoxifen, and Herceptin, and I was feeling so much better physically.  Then a routine CT scan threw me into a complete tailspin over worry about radiation exposure, cancer recurrence, just everything. I know those who haven't gone through it don't understand why suddenly I might feel worse though the "worst" of it is supposedly over, so it is reassuring to know what I am feeling is "normal" and that hopefully it will pass soon. Hugs to you all...