Feeling lost, No peace

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Bliz
Bliz Member Posts: 507
edited June 2014 in Life After Breast Cancer

I so much would like to "move on" from cancer, but right now I feel stuck. 

A little background: On the board since I was diagnosed in June.  Grade1/Stage1, .9mm,Er+, no nodes, lupectomy, 5 day rad, oncotype 20.

Maybe the feelings I am going through now are common but I couldnt find a similar topic so starting this one.

I seem to be going through such negativity and lack of peace with the whole cancer thing. It is really bringing me down. 

I was pretty lucky, as I can see, that it was caught early, etc, but still I am so angry that I got it at all.  I would be the poster child for healthy living and now it seems all for naught. 

Now that I truly understand the possibility of this killing me much earlier than I ever expected to die, I am depressed about that too.

Maybe I am just throwing a pity party, but I cant deny these are feelings that keep cropping up again and again.  Denying it or putting a Pollyanna face on it, don't seem useful.  

I went back to my old therapist which helped and also received a few sessions of counseling through the cancer center here.

Maybe it is the fact I have not done well on the anti-hormone medicine so far and had to stop. The doc will have me try another med in a few weeks, but I have serious doubts I will find one whose side effects I can tolerate.  I realize that raises my recurrence rate. 

So my choices seem to be higher recurrence rate or misery in present times.

I am having other stress related physical issues related to all this, which brings me farther down.  I am definitely up for suggestions though or how others deal with these issues. 

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  • nosurrender
    nosurrender Member Posts: 2,019
    edited November 2007

    Hi,

    I think it has to do with the fact that we can't seem to trust anything anymore- not even our own bodies.

    and we get afraid to look too far into the future because those dark doubts creep in.

    But the longer you are NED the more at ease you will feel.

    I think the first two years after dx are the hardest emotionally. I know they were for me.

    But eventually you will not wake up and think about cancer the first thing and you will start making plans and not letting the thought of it invade your happiness.

    It just takes time. Time for your spirit to heal after all you have been through.

    ((Hugs))

    g 

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  • iodine
    iodine Member Posts: 4,289
    edited November 2007

    A lot of us, when the rush is over, Finally begin to wrap our heads around the fact that we had BREAST CANCER!  OMG!

    For the longest time we are too busy to actually stop and think about it, so when it winds down, it really hits.

    You are not unusual with these feelings.  And the anger! Well, I took a long time to get over that.  And it's exhausting. 

    Add to that the other difficulties you are facing and it's no wonder you feel way, way down.

    For some reason we feel we're supposed to jump up and shout when the treatment is done.  But a lot of us just feel like we've thrown overboard to the sharks.  No one keeping close watch on us.  And I don't think I did a good job before---I didn't predict my bc, so how can I trust myself to keep a good lookout for further trouble.

    You are doing the exact right thing by seeking counseling.  It was a life saver for me and helped with my anger, too.

    You may also want to consider asking for the right meds to help you thru this time.  You don't have to take them forever, just to get thru this very stressful time.

    My heart goes out to you. 

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  • Bliz
    Bliz Member Posts: 507
    edited November 2007

    Thanks to both of you. 

    I dreaded looking at this post today as it felt like such a pity party. But I knew I had to get it out. 

    Trust is the big issue.  Because of all the care I took with my health, I really feel betrayed.  I didn't realize how much my great health was a badge of honor and part of my personality and identity.

    As you said, now that I am through the bulk of the treatment, it gives more time to sink in. 

    Are there any good books out there on how to deal with this time.  Two years is an eon to wait for this to surpass.

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  • kimvidito
    kimvidito Member Posts: 105
    edited November 2007

    Hi blitz

    I just finished tx too and feel like you do.  My son is very ill with lupus and I feel like my nerves are thin.  I feel angry as well because I feel betrayed by god.  How could this happen to me BC, when my son is fighting the battle of his life.  I agree with iodine about continuing with therapy and maybe the right meds.  I decided to take a longer sick leave and take meds this week because I could not move on.  I still have to look after myself and I'm still having increase fatigue.  Sometimes we just have to stop and take care of ourselves

    hope you feel better

    Kim 

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  • Paulette531
    Paulette531 Member Posts: 738
    edited November 2007

    Bliz...I know what you mean about taking care of yourself previous to diagnoses, I did also.

    The one thing I got out of that was going through treatment (chemo) may have been easier because I started out pretty healthy. (exception cancer, weird way to put it). I remember my onc nurse telling me in all the years she had administered chemo, she had two people whose blood counts never faltered and I was one of them. I attributed that to pre-cancer health. So, maybe those years of taking care of things was not for naught! 

    I think most of us have the after-treatment blues, hang in there, things will get better, they will never be how they were, but you will reach a new norm. I am rooting for ya'! 

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  • Hattie
    Hattie Member Posts: 414
    edited November 2007

    Thankfully, we can talk about this now, and docs are starting to realize how many of us have these post-treatment issues.



    Time does help, and you develop some perspective and framework for your experiencce. Counseling, meds, meditation, exercise, support groups, finding joy each day.



    Musa Mayer wrote some helpful books. http://www.amazon.com/After-Breast-Cancer-Questions-Patient-Centered/dp/0596507836/ref=pd_bbs_sr_1?ie=UTF8&s=books&qid=1195663789&sr=1-1

    (this page has other related books, including one by Dr. Weiss of bc.org).



    Also I found books by Rachel Naomi Remen (tho not specifically about bc) very helpful.

    http://www.amazon.com/s/ref=nb_ss_b/105-7184136-0483604?url=search-alias=stripbooks&field-keywords=rachel+naomi+remen&x=0&y=0



    I keep telling myself I did the best I could and will continue to take the next best steps. Giving up the idea that I could control everything actually gave me great peace--I don't have to save myself, I just have to live as best I can.



    I know a lot of women who gave up on tamox and AI's--the slight (or even nil) risk reduction wasn't worth the price in side effects. Trust in your instincts.



    Take care,

    --Hattie

    (sorry, I still can't figure out how to make links)
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  • Fitztwins
    Fitztwins Member Posts: 7,969
    edited November 2007

    I am approaching 3 years. I didn't feel lost, but just a sense of doom for a long time.

    I am not who I was 3 years ago. I miss her. But I am okay. I enjoy life, my family, my friends, my wine and my food.  All in that order!  I get angry and I have some fear. I work hard on enjoying my life, my family and my work.

    One book that helped me was actually by the Founder of this Site! Marissa Weiss. Moving Beyond Breast Cancer. It helps.

    Janis

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  • Towanda2
    Towanda2 Member Posts: 94
    edited November 2007

    Another helpful book is After Breast Cancer by Hester Hill Schnipper.  She is a BC survivor as well as an oncology social worker. 

    I also found this book about dealing with life-threatening illness very helpful: Close to the Bone, by psychiatrist Jean Shinoda Bolen.

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  • Bliz
    Bliz Member Posts: 507
    edited November 2007

    Thanks for the encouragement and suggestions.  I, too, was called the healthiest cancer patient they had ever seen.  Geez, not an honor we wanted, right?

    I will check out the books and other suggestions.  I am not big on meds for depression or anxiety as I dont do too well on meds in general.  But, I will keep a check on how bad it gets. 

    I think I do find joy in more things and live each day more than ever.  Still the crushing other issues surface too.  My sleep is erratic and I am sure that is not helping. 

    Cancer was so "not in the plan" and all the healthy living was for an insurance.  I am usually pretty resilient so hopefully I will bounce back.  I am headed for a long vacation soon, so that should help.

    Interested in hearing how others coped.  Maybe I could take up target shooting with cancer on the bullseye.

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  • Brendatrue
    Brendatrue Member Posts: 1,830
    edited November 2007

    Bliz--

    Amongst many ways of coping, I have tried to rebuild my trust in my body by learning t'ai chi, by receiving massage therapy, by using guided imagery to help increase my awareness of my body and its response to stress.

    One of the best strategies I learned for dealing with "difficult" intense emotions has been not to run from those emotions, to accept and "study" them, to not judge myself for having them. Usually the "studying" really is about noticing and learning, rather than scrutinizing and becoming obsessive. Being mindful of the interplay of my emotional state, thinking patterns, and physical experiences (the impact of each on the others) has helped me to feel more "'whole" as I healed from breast ca #1 and as I continue to heal from breast ca #2.

    Learning that I tended to "live too much in my head" has helped me to delve more deeply into experiences that allow me to feel more joy and relax into my body in spite of pain.

    Connecting with others has helped me to feel less crazy and less alienated from others who appear not to understand/accept (or sometimes do not want to understand/accept) what this cancer experience/life after cancer is like for us.

    That's what comes immediately to mind. Sometimes it feels like an awful lot of hard work just making sense of the experience and finding new ways of living after the illusion of control has been shattered. Although I know that a lot of the work is "inner work," I allow myself to draw inspiration from others.

    This may sound a little crazy, but see if it is possible to find a little peace in the experience of being lost. Being lost is not always a bad thing; you may find that the journey to finding more peace is as important as the peace itself.

    Holding hope for you and for all who search for peace,

    Brenda

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  • Bliz
    Bliz Member Posts: 507
    edited November 2007

    Brenda,

    This does not sound crazy at all and is what my therapist and I have worked on for many years.  To actually feel those "scary" emotions instead of over thinking them.  I am in my head a lot too. 

    I also get regular massage therapy and think some guided imagery would help also.  I can picture my body fighting off any future cancers.  Have not tried Tai Chi but worth a shot too.

    Trust is so much the issue, especially because I felt I was in tune with my body.  Sad or interesting thing is I had said for two years that something is wrong.  All the docs blew it off as menopause.  Finally the routine mammogram and the bc. 

    Hope all have a good Thanksgiving. I am thankful for this site as it helps so much to get things out of my head and onto this board.

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  • omyoga
    omyoga Member Posts: 12
    edited November 2007

    One thing that gave me some peace of mind was to have 6 month physicals with my GP rather than annual.  That way I did not feel so alone.

    Your feelings of betrayal and fear are universal I believe.  Time will diminish these feelings in much the same way as you adjust gradually to a death in the family - that is my best comparison.  You will no longer wake up with a start, those feelings will not always be in the background, etc. and one day you will notice that a whole afternoon went by without any of these thoughts. 

     Try to do small things for yourself that you enjoy - hot chocolate and a book, a craft you have neglected, working on the photo album.  These things make you feel you are still you.

    best wishes

    omyoga

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  • Bliz
    Bliz Member Posts: 507
    edited November 2007

    Omyoga, Thank you for the good advice. 

    Treating it like a death is something I can wrap my head around.  The concept that it will diminish with time. 

    I dont wake up thinking about it so much.  It is more in those quiet moments of reflection that I used to enjoy.  Then I am most reminded that my life has totally changed. 

    It is comforting to know that these feelings of betrayal and fear will diminish in time.

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  • Harley44
    Harley44 Member Posts: 5,446
    edited November 2007

    Bliz,


    I agree with the others...

    Just need to try to do the best we can, and go from there. 

    I think I will ask my GP to do more frequent checks for me, too.

    Hugs,

    HARLEY

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  • seagrove3
    seagrove3 Member Posts: 4
    edited November 2007

    I am still sick after the year it took to get this resolved...ended up with a double mastectomy....ovaries removed to avoid meds.....but I am still feeling sick a year after diagnosis definitely lost, no peace marriage falling apart....feeling disconnected from normal life and frustrated....My liver numbers are creeping up..... I was stage one, but symptoms continue to get worse.....I feel so alone....I already lost a child to 13 years of illness.....I really don't have much reserve left....my love to you all.....this is not for the faint of heart

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  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited March 2008

    Seagrove,



    It is good to see your first post, and I want to ensure it doesn't just get "swallowed up", or perhaps not as noticed as it might. Welcome to the BC.org discussion boards.



    I am so sorry you have gone through so much in such a short period of time, and still not feeling well. You have multiple stresses which you mention as well as the not feeling well, and worry of rising blood numbers.



    But no need any longer to feel alone. You have found a site which, imo, may help you feel less isolated with all that you are struggling with.



    If you could post your type of cancer (IDC, ILC) the stage (early or advanced) and treatments, then we can help you get in with the most appropriate thread of women who are similar to your findings.



    And please should you wish, feel free to tell us what's happening with your liver numbers, as well as what you oncologist is doing for you to determine their reason.



    Again, welcome to a collection of people who share in this disease, it's moments of control, as well as it's hardships all with the goal of support of one another.



    We particularly are concerned about new women posting. We want to make sure you are heard, and feel that you may comment more, should you wish too.



    Take care, and I hope to see you back,

    Tender

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  • seagrove3
    seagrove3 Member Posts: 4
    edited November 2007

    thank you for your thoughtfulness.....I was diagnosed a year ago September.....after much confusion regarding diagnosis....infultrating lobular... 2 lumpectomies(stopped breathing during one) the beginning of radiation that made me deathly ill....I went back to my original request.....mastectomy please...and please take my ovaries out as well....(I did massive research).....9 hour surgery.......left with an intern....almost died from internal bleeding rushed to or...transfused.....and then a really messed up reconstruction....I am greatful to be alive....honestly....I am.....but I just started believing in life after losing my son to medical errors.....and then this.....my onc is a nice man...I live in the South...(I am not from the South)...they have a very wait and see attitide about post treatment period....he doesn't want to rush into any addition tests.... but honestly I would rather have some answers....vague as they might be.....I feel very alone not frightened just alone.....

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  • rumoret
    rumoret Member Posts: 685
    edited November 2007

    Seagrove3,

    Just thought I would jump on the board after Thanksgiving dinner to see if anyone was posting. I just want to agree with what Tender said above....and let you know that we are here to listen and then respond to your needs. I also feel your pain.....I was in the hospital after my 4th chemo treatment for bowel obstruction....and then had to go back because they gave me hospital induced pneumonia. I was very post traumatic for about 10 months....and I am starting to do better. I understand your feeling very alone and frightened at this time....and that is why this message board will help you.

    Please post......and we will come. I will keep you in my prayers this evening.

    Love,

    Terry 

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  • seagrove3
    seagrove3 Member Posts: 4
    edited November 2007

    Thank you for honoring me with your response.....I expected to be so much better at this after the life I have already lived....but honestly I feel so very alone....my husband actually told me if I would just lift weights with him it would help me....I have never gone into a single chat room since all this started because I wanted to focus on the treatment decisions and now I feel like I am in this no mans land......thank you lovely women for knowing that this Thanksgiving day......has been very odd......love to you all...

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  • iodine
    iodine Member Posts: 4,289
    edited November 2007

    Hello seagrove, i just wanted to add another set of "ears" so that you will know that you are heard.

    Please come as often as  you like and let us help as much as we can.

    You are certainly not alone in this difficult time.

    It's when everyone thinks you should be off and running and become carefree--at least that's what they want to think.  Unfortunately, we who have been down this path know differently.

    Gentle hugs.

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  • seagrove3
    seagrove3 Member Posts: 4
    edited November 2007

    thank you for the insight.....iodine, I noticed you are in TN, so am I.....I feel over exposed just sharing any of this because I have spent so much time feeling like I have to be upbeat for everyone and now I am overwhelmed and just plain tired..... do marriages break down at this point?.....I have too many decisions to make...and all I want to do is take care of my body and spirit....

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  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited March 2008



    You deserve our thanks too, seagrove, for focusing our attention on the all to common "rough patches" we hit with our body, our treatment, our medical system, and also our dear ones when this disease comes calling.



    You remind me of myself in many ways; very introspective during the initial years, intense on executing a winning plan of action, plodding along to the next step to hopefully boister up the percentages on ultimate success. This in part kept me away from a board such as this, which I regret as I have found much solace since joining this strong caring group since registering.



    Marriages can and do suffer under the weight of treatment, the weight of treatment complications, and the weight of being the main sounding board and interactive. I humbly say this as I believe my DH has had heavier shoulders to square up due to these trials and tribulations, and of course at times we have both wondered if our marriage was suffering too much. We sought counseling to address the multiple issues as well as to reveal how we each individually deal with intense stress, gleaned from our primary families. And we revisited what drew us together in the first place, which allowed those marriage vows. We remain married and are coping better. But this community, this board, definitely helps in providing a space of understanding and idea bounce back not largely present for me early on. My siblings' approach was largely tantamount to the disease and it's toll not occurring. How sad for us all.



    Sometimes I concern myself with saying such things so publicly across the web, yet then I realize I am as human as everyone else and have no pulpit to talk to or from. I very much appreciate where you are coming from as well as our collective group here, and encourage you to use us as your "sounding board" if you so wish to do so.



    In reflection of a day of collective Thanksgiving passed, which had it's own remembrances on how precious life is as well as how precious we are to one another, I welcome you and all newcomers. Thank you too, Bliz, for starting this very truthful thread.



    Tender

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  • Bliz
    Bliz Member Posts: 507
    edited November 2007

    Harley44,

    Thanks for the encouragment.  Are you the Harley lady on this board who was waiting for her husband to retire from the military? 

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  • Harley44
    Harley44 Member Posts: 5,446
    edited November 2007

    Bliz,


    Yes, I had to re-register when they started this new forum...  My dh is back now, and I have to adjust to having him here ALL THE TIME.  It is nice to have him here, don't get me wrong, but sometimes, after all I have been through, I feel 'strange', and I feel the need to be alone.  I am not sure why, but I do... 

    I guess I have been changed forever by this bc experience, I don't know how we can go through this and not be changed. 

    I am so glad to hear from you.  If I remember correctly, you opted for no chemo, and you are having trouble with the Arimidex, is that correct?  I am sorry to hear that you are having problems with Arimidex, but maybe after taking a break, you can try a different AI. 

    I am taking Tamoxifen for now, but will switch to an AI after 2 years.  Right now, I think that I will just see how this goes, since today is day #6 on Tamoxifen...  Maybe that is how I will get through this phase of my treatment... one day at a time.

    The hard part about this phase of bc treatment is that to all appearances, to  my family and friends, I am FINISHED with my treatment, since they don't see me getting chemo, or having any more surgery...  I am still having to think about this every day, only no one else knows...  I look ok.  Oh, and WHEN, oh, WHEN, will my hair come back?! 

    We are survivors, if we can get through  all the treatment, we can get through anything.

    Hugs

    Harley

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  • Bliz
    Bliz Member Posts: 507
    edited November 2007

    Hi and hugs to you too, Harley,

    I am glad you are doing okay and your husband is back.  I did laugh about now he is there all the time.  I know what you mean though.  I always valued and recharged during my alone time.  Also I believe we have so much to process that we need that solitude to do it. 

    You might remember that only my parents and a couple of friends, not in this area, knew about my bc.  So although I am overall happy with that decision, it means I have less support.

    So you went ahead with the chemo.  How are you doing with everything?  Was the chemo as bad as you feared?

    I will try Femera in a couple of weeks.  The onc actually has me taking it on Mondays and Thursdays only, to start.  That makes sense.  She came up with this on her own, which pleasantly surprised me.  Like she got that I didnt need or couldnt tolerate the whole dose. We will work up to a full dose,though.

    Are you having any fun?  What are your Holiday plans?  I will leave town and head south for several weeks, which will help.  Just getting a lot of my feelings out here has helped a lot, too.

    Keep me posted on what is going on with you.

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  • Harley44
    Harley44 Member Posts: 5,446
    edited November 2007

    Bliz,

    I did get chemo, and I had 4 txs of Taxotere & Cytoxan.  I had very minimal side effects from them.  I did lose most of my hair, and am doing the wig thing...  It seems like it takes FOREVER for my hair to grow out.  Right now, it is still kind of spotty around the edges, but it is coming in darker, which is nice.

    It must be hard for you, not having much support.  For me, emotional support has been crucial.  I spoke to a friend at the coffee shop this morning, and tried to explain to him how even though I am finished most of the treatment and surgery phase of my treatment, I still feel strange, and now that everyone seems to think I am finished, NOW is when I also feel the need for support.  He told me that I have been through so much, and it takes a toll on us, emotionally.  He is a wise man.

    I would think that taking Femara only 2 or 3 days a week would still be better than nothing...  I will try to remember this, if I have any problems, when I switch from Tamoxifen to an AI...  Maybe even taking an AI 3 days a week is better than not at all...  I just started Tamoxifen and have been on it for almost a week now.

    We aren't doing anything for the Holidays, just staying home.  But, maybe in February, dh and I are going to try to take a last minute cruise for seven days.  It will probably be a Carribean cruise, and we will drive down to either Tampa or Ft. Lauderdale to get the ship, and maybe get there a day or so early, and stay at a hotel.  I think with all that I have been through in the past year, I really need this getaway! 

    Also, we are booked on a cruise with SILVER SEA cruise line (they are an ultra luxury cruise line!), and will be going on a 14 day cruise over Christmas & New Years 2008 - 2009... next year... I can't wait for that!  We have been waiting for this, because we were going to go on a cruise like this to celebrate our 20th wedding anniversary, but my FIL got sick, and was dx'd with kidney cancer, with bone mets.  He passed away in Aug. 2005, but we have been so busy since then. 


    I told my family today that this has been a HELL of a year, and I just don't know when I will get back to visit them.  I mentioned earlier that we moved last year, and my sisters haven't forgiven me yet for moving so far away from them.  Such is life...

    I am glad to hear that you are doing well.  Keep in touch, and let me know how you are doing.  We met when we were both going through the first, most scary stage of all this bc dx... being newly dx'd, and having so many decisions to make!

    Hugs

    Harley

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  • Bliz
    Bliz Member Posts: 507
    edited November 2007

    The cruises sound great, Harley. Glad you are finished with most of the treatment.  Stay in touch.

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  • Bliz
    Bliz Member Posts: 507
    edited November 2007

    I just realized I didnt answer this post very well.  Not sure what was going on with me at the time.

    Regarding your family and even DH who may not fully grasp what is going on.  It must be hard to know what we are going through unless you are in our shoes.  I know it has made a lot more clear to me.  And I think our loved ones just want us to be better, because it scares them. Or they may be just selfish and cant see beyond their own needs.  It is hard to figure.

    I have really been okay with my decision not to tell people.  Judging on how my friends have dealt with other people's illnesses, I know I didnt want that.  Like people cooking meals for me, (oh well that might have been nice),  and sending out endless emails about my condition. Prayer chains etc. (Well that might have been nice too.)

    I knew I wanted peace and quiet.  ON the other hand, I obviously need some support and suppose that is why I am here.  Maybe I am just a private person about this kind of stuff.  Dont know.  I knew if it become public knowledge it could threaten how I got my health insurance and I knew I didnt want that.

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  • Harley44
    Harley44 Member Posts: 5,446
    edited November 2007

    Bliz,

    I know that whatever happens, we get through it...  Somehow.

    Maybe you didn't have as much support as others did, but, as you said, you also didn't have to deal with family members and friends who forgot about you when they found out about your bc dx.

    My sisters couldn't understand why I would have a bi-lateral mast., and why I would opt for chemo,...  etc...  Once I had the surgery, they came over to help for a few days.  Believe me, I really appreciated their help, and I really did enjoy having them here, even just for a few days!  But, now they feel that they did their part, and even though I needed more support, maybe phone calls or cards, I didn't get much more support of this kind while I was getting chemo...  or now, either.  Strange...

    Sorry for rambling... I guess I just needed to vent.

    At least with my MIL or my DH, I know that they are trying to help me, even if they may say the wrong things at times.

    Hope you had a great Thanksgiving!  I hope to hear more from you.  Let me know how the Femara goes... I will be switching to an AI in a couple of years, so I would like to hear reports about how you are doing.

    Hugs

    Harley

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  • tcbythesea
    tcbythesea Member Posts: 27
    edited November 2007

    I sure know where your coming from, I was diagnosed with Breast cancer 3 years ago, this coming Jan.   I have been steadily feeling worse, I am on Arimidex, as well as high blood pressure med, and thyroid med.  I take Hydrocodone on a very limited basis, because I have degenerative disk disease, and two ruptured disk.  I am almost 69 years old.  My quality of life seems to be totally gone, I can do very little around my home, or out of my home for that matter.  The major problem is I am scared to death I have cancer going on somewhere else, stomach, (because of ongoing stomach problem)  bone pain, etc.   I do not know what I will do if I hear that I have cancer elsewhere.   I did not handle the breast cancer well, I have never felt ok since being diagnosed.  It totally shook my world and continues to do that.  I have fibromyalgia and my sleep is very poor, when I wake up in the morning I feel like I have been hit by a bus.  I think that is why I fret so much over having cancer again, or somewhere else.

      I don't even know my self anymore, and I don't know what to do about it.   The oncologist I have is said to be good, however she does not have a personal caring relationship with her patients, she is very clinical, and busy.   I have thought seriously about changing dr's. for this reason, but not sure how smart that would be at this point.     Anyone who could or would give me some suggestions, I would love to hear from you via the chat or via e-mail

    Easy hugs, TC

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