it's been quite a year

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  • orangemat
    orangemat Member Posts: 645
    edited June 2012

    Kate, interesting views on RL support groups. Personally, I find it overwhelming to go out and talk to people in groups about things. I prefer one-on-one. Maybe when it's on-line, there's less of that one vs many feeling that overwhelms?

    Though speaking of one-on-one, I got a phone call today from a woman I know as an acquaintance in my community. She was just diagnosed with BC this week and will be first meeting with a BS on Monday (same BS I used). She seemed really together about things, which made me wonder, did I seem that way when I was first diagnosed? I think so. Maybe she won't be shellshocked after the fact, and have it hit her hard once all the "stuff" is done. Yeah, I really hope that's the case.

  • Allagashmaggie
    Allagashmaggie Member Posts: 92
    edited June 2012

    I am so glad that I found this forum (thread).  I am now over a month out from radiation and have been taking Arimidex for a month.  It has been nearly 10 months since I was called back for "more views" after my routine annual mammogram and the rest is history -  a story that I am sure you are all familiar with unfortunately.   I am just not that far out enough yet to relax even though my oncologists are very encouraging.  I was so fortunate to have handled chemo and radiation as well as I did and I do have good energy and feel well BUT.......I too am having trouble moving on.  I will be feeling very perky and upbeat one moment and then it all comes crashing down on me again.  I can already feel myself getting anxious about my 6 month mammogram that is still 2 months away.   I, too, notice that people are probably sick of hearing about my cancer.  When I say to one of my sisters that life is so uncertain now, she will respond "well none of us knows if we will be around tomorrow or not" which is true.  Still once given this diagnosis, the future really does take on a different meaning.  Like I read on one of these posts, I try to enjoy my life today, live in the moment and if I am around tomorrow, I will enjoy tomorrow too.  In other words, one day at a time.  It does help knowing that this is common amongst us bc survivors (or any cancer survivor) and that I am not simply wallowing in it.  I do live very remotely (had to move for the daily radiation for 6 weeks) so I don't go to support groups but I really probably would not go even if I lived closer to one.  This site helps me when I  really start feeling anxious or get on my pity party.  Thank you all for being there any time I need you.

    Hugs and thumbs up to all,

    Allgashmaggie

  • Adey
    Adey Member Posts: 3,610
    edited June 2012

    "well none of us knows if we will be around tomorrow or not"

    The standard response from people that do not understand.  True, but not the point.  Hang in there Maggie.

  • RoulaG
    RoulaG Member Posts: 239
    edited June 2012

    Allgashmaggie- I know how you feel, I have talked to many women who say the fear and dread never really goes away. It just gets less intense as time goes on. I am still in the middle of chemo, not really I would've been but they had to delay my 3rd TCH, due to my blood counts.



    Every day is a blessing and I finally realized that stuff that I thought was important is really not. I will take every day as it comes and truly live. I hope the same for every one facing this disease. It could always be worse. The number one killer I believe is heart disease not breast cancer.



    Have a wonderful weekend!

  • Adey
    Adey Member Posts: 3,610
    edited June 2012

    You got that right Roula, every day is a blessing that I am so grateful for!

    (for which I am grateful?)  Laughing

  • RoulaG
    RoulaG Member Posts: 239
    edited June 2012

    Adey - I know, sometimes I try to convince myself :-), in all reality c really sucks. It's not fair, but what can I do, I could live another 40 years, do I want to live them in fear or just live? See there I go again...

  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2012

    Awhile ago I came across an article about feeling depressed after cancer treatment is over.  It really resonated with me and I've posted it several times on different threads and it seems to help others as well.  What I find interesting is it was written not by a woman after BC, but by a man after prostate cancer, and shows these feelings are very common among all survivors.  I think sometimes women are made to feel like they are being silly-nillies just mourning their vanity when in reality it goes so much deeper than that.

     

     

    After Cancer, Ambushed by Depression

    By Dana Jennings

    I’m depressed.

     

    I’m recovering well from an aggressive case of prostate cancer.  I haven’t had any treatment in months, and all of my physical signposts of health are pointing in the right direction.

     

    Still, I’m depressed.

     

    And I’ve been ambushed by it.  After more than one year of diagnosis, treatment and waiting.  It’s almost as if, finally and unexpectedly, my psyche heaved a sigh and gave itself permission to implode.

     

    I’m not alone in this cancer-caused depression.  As many as 25 percent of cancer patients develop depression, according to the American Cancer Society.  That’s contrasted with about 7 percent of the general population.

     

    This isn’t about sadness or melancholy.  It’s more profound than that.  Broadly, I have a keen sense of being oppressed, as if I were trapped, wrapped up in some thick fog coming off the North Atlantic.

     

    To be more specific, I’m exhausted, unfocused and tap my left foot a lot in agitation.  I don’t much want to go anywhere- especially anyplace that’s crowded- and some days I can’t even bear the thought of picking up the phone or changing a light bulb.  All of this is often topped off by an aspirin-proof headache.

     

    The fatigue frustrates me the most.  When I envision myself it’s as a body of motion, walking or running, not floundering in bed.  On one recent day, I slept till 10 in the morning- getting 11 hours of sleep- then took a nap from noon to 2.  And I was still tired.

     

    I’ve had occasional depression over the years, but nothing as dogged as this.  When I first learned that I had prostate cancer, I wondered about depression.  But after the shock of the diagnosis wore off, I was sharp and clear-headed.  I wasn’t depressed as I went through treatment- surgery, radiation and hormone therapy.  I was buoyed by a kind of illness-induced adrenaline.

     

    The bone-smoldering fatigue arrived in late spring/early summer, and intensified as summer deepened.  I thought that I might be depressed, but resisted the diagnosis, didn’t want to countenance the idea that I could be depressed after all of my treatment.

     

    I stubbornly chalked up the fatigue to the lingering aftereffects of radiation and my fluctuating levels of testosterone.  But I was wrong.

     

    I am seeing a psychiatrist who specialized in cancer patients, and have started a course in medication.  My doctor assures me that depression isn’t unusual among those who are on the far side of treatment.

     

    Partly, I think, I’m grieving for the person I was before I learned I had cancer.  Mortality is no longer abstract, and a certain innocence has been lost.

     

    And while the physical trauma is past, the stress lingers and brings with it days washed in fine shades of gray.  In the same way that radiation has a half-life, stress does to.  We all ache to be the heroes of our own tales, right?  Well, I’m not feeling too heroic these days.

     

    Cancer pushes a lot of difficult buttons.  It lays bare our basic vulnerability and underlines the uncertainty of this life.  And prostate cancer attacks our culture’s ideal of manhood.  The steely eyed Marlboro Man isn’t expected to worry about incontinence and erectile dysfunction.

     

    Cancer feels bleaker than other diseases.  Even though my health keeps improving, and there’s a good chance that I’m cancer free, I still feel stalked, as if the cancer were perched on my shoulder like some unrepentant imp.

     

    It’s harder to write about the weight of depression than it is to write about prostate cancer and its physical indignities.  Cancer is clear biological bad luck.  But depression, no matter how much we know about it, makes part of me feel as if it’s somehow my fault, and that I’m guilty of something I can’t quite articulate.

     

    This has been a difficult post to write because during my dark waltz with cancer I’ve depended on my natural optimism and my sense of humor to help see me through.  But depression blunts those traits.

     

    In the end, though, I believe and trust in the healing power of the stories that we tell each other.  And I wouldn’t be truthful to you or myself if I ignored the fact that I’m depressed- even as I wait for a brisk wind out of the North to blow this fog of mine away. 

  • CLC
    CLC Member Posts: 1,531
    edited June 2012

    Kate...thanks for posting this...  A lot of it resonates with me, too...

  • Elizabeth1889
    Elizabeth1889 Member Posts: 1,036
    edited June 2012

    Kate, Thanks for posting that article. I have read it previously, but a cancer survivor can never read it enough. What he says is true for all of us.

  • 1openheart
    1openheart Member Posts: 765
    edited June 2012

    Kate...thank you for posting that.  I have not seen it before.  It is very powerful.  

    "Cancer feels bleaker than other diseases.  Even though my health keeps improving, and there’s a good chance that I’m cancer free, I still feel stalked, as if the cancer were perched on my shoulder like some unrepentant imp. "   Even though I know my cancer was just DCIS and by definition non invasive and by definition "not sitting on my shoulder", at times, when I allow my mind to wander that way, I too, worry about facing this again.  (Man...that's a lot of commas!)  I am, by nature, a glass half full girl.  I don't go looking for trouble.  I agree with what Roula said about having a choice to make.  Do we live our days in fear, or do we chose to live each day fully and with joy?  I try everyday to find some joy and gratitude and go from there.

    Welcome to our little group Allagashmag.  Lots of great women here to help you though the rough days. 

  • SuzyBlue
    SuzyBlue Member Posts: 125
    edited June 2012

    That is a wonderful piece of writing, it made me quite emotional. I can easily see myself in it, in the sense that now that my surgeries are nearly over, I feel more irritated and flattened by the last six months than I have felt at any time during. I think the writer is right in saying your mind functions in a way it has to, to get you through the immediate crisis but then it almost burns out with the effort of it all once that crisis has been dealt with.



    1openheart, I don't like to read 'just DCIS'. I feel that those of us who's cancer is not invasive, while obviously luckier than those whose is, have still suffered major trauma to our bodies and our minds. Sorry, I don't want to preach, but I get a bit upset at anything that seems to downplay this whole horrible experience - you can see that my head is in the about to implode stage haha!

  • crystalphm
    crystalphm Member Posts: 1,138
    edited June 2012

    I am so glad I have found all of you. I have been reading books on being a survivor, and it is not doing anything for me.

    Now I realize I am different, cancer changed me but I don't know who I am anymore. And i am tired, gained too much weight from bad habits, am cancer free but have no breasts.

    It is alot to cope with. I had one mastectomy 2 years ago, the other one 6 months ago. So I seem to be living my life *needing* to talk about this, what happened to me, like I have post traumatic stress disorder from it OR something like that.

    I don't talk to anyone face to face about cancer anymore, I don't want sympathy, but yet I have feelings I need to be validated.

    i am a survivor...but I don't feel that way. I feel sorta empty at times.

  • Elizabeth1889
    Elizabeth1889 Member Posts: 1,036
    edited June 2012

    crystalphm, You expressed perfectly how many of us feel. I hope it helps to know that you are not alone. Sometimes I feel that the people here are the only ones who truly understand what I am experiencing. Sending hugs to you.

  • 1openheart
    1openheart Member Posts: 765
    edited June 2012

    Suzyblue....You are absolutely right.  Usually when I express that sentiment I put the just in quotation marks.    Believe me, I know that those of us who did not have invasive cancer and therefore did not need chemo or maybe even radiation,  are all grateful that we did not have to go down that road.  But I would never minimize the trauma and heartache that I felt and still feel about losing my breast.  I would venture to say that all of us who visit these boards have had to endure much, both physically and emotionally no matter what the stage and grade of bc we have.  

    I can see from your sig line that you have been through a lot since this year began. I know you must be weary.   I am almost a year out from my UMX and I still have days when I am just down right pissed at the world.  I try not to minimize those feelings and let them run their course.  And I try to remind myself that I still have so much to be grateful for in my life and so much ahead that I want to be around to see and experience.  I wish you continued healing, peace and ease as the rest of the year unfolds.

  • proudtospin
    proudtospin Member Posts: 5,972
    edited June 2012

    What can I say that has not been said, I try to put it behind me but days like today when I am waiting on my mamo appt tommorrow, it is the first time since diagnosis that I have gone a full year. Nerves are sharp.  Depression comes and goes and I try to stay busy and around folks who understand. 

    Since the end of active treatment (I am 3 1/2 years on the aromasin), I have re evaluated things in my life.  Job...career is sort of winding down really and working on a plan with a financial person to try to retire in 2 years or less.  It is weird as planners want to do a plan where you live till you are 95 and no way do I see that happening. But the stress of my job is not helping my health.  Much more tired that before treatment.  Have not done a spin class in a couple of years and come home from my gym, too tired to move much.

    But this is my therapy

  • orangemat
    orangemat Member Posts: 645
    edited June 2012

    Hey, how's everyone been lately? Things have been pretty much status quo, until yesterday when I had a chat conversation with a friend I met recently through my running club. Had to end up explaining the events of the past year (why I hadn't been racing last summer, etc) and that gave me that familiar icky feeling in the pit of my stomach... Like, uh oh, here we go again, have to retell and relive the stories... I know that with enough passage of time, the wounds won't feel so fresh and I won't feel like I'm reopening them whenever the subject comes up. I almost wish people would all already know my story so I don't have to tell it to them, ya know? I seriously thought this fellow already knew, oh well...



    Time will heal, I know. Isn't that the way it is with everything? Sigh....

  • Ginger48
    Ginger48 Member Posts: 1,978
    edited June 2012

    Today a very close friend who was a huge supporter of me this past year was diagnosed with breast cancer. I feel like I have been kicked in the gut. It has brought lots of emotions to the surface. I am going with her to the surgeon on Monday. I will be there for whatever she needs. Just never seems to end...

  • orangemat
    orangemat Member Posts: 645
    edited June 2012

    Oh Ginger, I'm so sorry to hear that! But it's good that you're there to support her, just as she has supported you. I believe we can't ever take the diagnosis personally. There's no punishment being exacted here, nor karmic payback of any sort. These things just happen, and we need to be strong and positive-minded when dealing with them. I wish your friend a speedy road back to health and an easy recovery. Hugs to the both of you.

  • 1openheart
    1openheart Member Posts: 765
    edited June 2012

    Oh Ginger....I am so sorry about your friend.  I know that kick in the gut feeling you are talking about.  I bet you will be a huge comfort and support for her, but I know you just wish it would end....you are just barely through your treatments.  Take care.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2012

    Ginger- I'm so sorry about your friend.  She's very lucky to have you by her side- someone who completely and totally gets what she's going through.  Just know that this alone will make things much easier for her as she tries to navigate the new world of BC.  Hope her appointment goes well.

  • Allagashmaggie
    Allagashmaggie Member Posts: 92
    edited June 2012

    Ginger......it is sooooo unfortunate that your friend has been given this diagnosis but she is very fortunate to have you with her, especially at the beginning as you know what questions to ask and find out what type of cancer this is.  When I was diagnosed last August, a friend of mine who had gone through it a year before told me about the onco-type test.  I went in armed with that information but my oncologist already planned on running this test based on my type of tumor.  After the initial blow, we set out to educate ourselves about this disease.  Even though my mom is a 26+ year survivor of bc, I did not pay much attention to just how prevalent bc is.  On my last day of radiation in April I told my oncologist that and she said "breast cancer is very, very common."  Why.......that is something I cannot get past.  What was it that caused my cancer.  I have tried to let it go but it still is a question I have.  I do have family history but they told me my cancer may have had nothing to do with my mothers and I have read that 80% of women diagnosed with bc do not have a family history.  Go figure.  We just have to forge ahead with the treatments and Ginger is very lucky to have you there for that. 

    Best to your friend and you,

    Allagashmaggie 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2012

    Allagashmaggie- I think the why question is one a lot of us ask ourselves.  If it's something that's really troubling you I found something that may help.  I joined Army of Women.  Their focus is to find the cause not the cure.  They match up researchers with women (and men) from across the country to help studies about why we get BC in the first place.  When you join they send you emails about different research studies.  If you are a match, and want to sign up, you let them know.  The majority of studies are just online surveys asking you different questions as they try to figure out common denominators.  They've also done some studies on improving BC care.  This allows researchers to have a access to a wider demographic.  It may just be one tiny thing but I feel like I'm helping in a small way.  If you're interested in signing up, or just getting more information about this cause, go to armyofwomen.org.  There's no charge to sign up.  

  • kestrelgurl
    kestrelgurl Member Posts: 266
    edited June 2012

    Yikes, Esther.....I think you are living in my head. So many of the things you have written are exactly how I have been feeling since my DX in Sept '11.  Because I am not a "pink person" and did not have chemo, there were few outward signs of my surgery and treatment.  I was a small breasted athletic-type and more than several "friends" reassured me that I was lucky because no one would ever notice my unreconstructed, non-prostheticized (is that a word?) chest. Yeah, that really made me feel better when I was struggling.

    I was back at work part-time within a week of my BMX, was full-time and never missed a day through radiation. I honestly suspect that people forgot I had cancer. I just didn't allow myself to act sick and I guess that didn't encourage people to act sympathetically. Or maybe they just didn't know how. I wonder if cannonballing into the pink pool with gusto is more of a  help to friends because it gives them a visible, social and almost fun way to rally round. Who knew there was a "right" way to do cancer? Trust me to get it wrong. ;-)

    Now that I am dealing with the Tamoxifen and all of it's lovely SE's, along with my concurrent diagnosis of chronic lymphocytic leukemia (yes, '11 was a real pip of a year), I hear a lot about how I am an inspiration which I find puzzling. As you said, I am just doing as I have always done. Running out the door in the morning, that's the easy part......adjusting to the absolute rocking of my world, now that's tough.....

  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2012

    kestrelgirl- Dang, I did cancer all wrong, too.  Wish they would have given us a handbook for all this.  I loved your post especially the part about "adjusting to the absolute rocking of my world".  Yep, that pretty much sums it up.

    It seems like a lot of us have struggles post treatment but no one really hears about this part of BC.  It's all rah rah, run a race encased in pink and celebrate- you're "done".   Looking at a possible second revision, dealing with LE from the first one and wrestling with emotional issues I'm not sure I even see the finish line from here.

  • orangemat
    orangemat Member Posts: 645
    edited June 2012

    Hey, at least we all still have our acerbic wit!

    Just got back from my 3-month post-op checkup with the PS. Took me longer to tuck my shirt back in than it took for him to examine me. "It's been three months, right?" "Yeah, enough already!" Needless to say, I don't hide my sunny disposition on all this from the medical folks. I think I actually saw the PS crack a smile... ooh, guess he'll have to fill that crack with another shot of botox...

    I'm sorry, but am I the only one annoyed with the seeming PERFECTION of those places?? Even the office staff have no wrinkles! And I saunter in there, sans makeup... you'd think they'd have a sign at the door: for perfectionist-seekers only. As I was paying for my tube of scar cream, the girl behind the counter asked if I had a points card. A what?? Like I'm going to come back to this place to have MORE work done, on an elective basis??? Sorry, I'm quite done with just my UMX and glorified boob job, thank you very much. But it's good to know you have a frequent shoppers card, sheesh....

    Hang in there ladies. One thing cancer can't take away from us is our sense of humor. Don't ever forget that.

  • kestrelgurl
    kestrelgurl Member Posts: 266
    edited June 2012

    Hmm, obviously I haven't missed much by not seeing a PS.....

  • 1openheart
    1openheart Member Posts: 765
    edited June 2012

    Frequent shoppers card for the PS?????  Geez.  The front desk girls at my PS's office are all perky and perfect.  The nurses are more like regular, lady next door type women.  I have to say that I do like my PS.  He is very approachable and down to earth.  He listens and answers and he has a sense of humor too.  

    Pink....funny thing.  When my best friend was dx. 8 yrs ago, I was all into the Komen and pink rah rah stuff.  But when it was me...not so much.  I did not know how to feel in October last year (first pink washing month since my dx).  I was really uncomfortable with the whole thing...still am.  I appreciate the work that they do and am grateful that bc is not a disease that no one talks about any more, but somehow it all seems so superfluous.  When I can buy everything from pink toilet paper to pink batteries and pink stand mixers....it loses something in the translation.  Oh well, time to step off my soapbox! 

  • kestrelgurl
    kestrelgurl Member Posts: 266
    edited June 2012

    I do have to say, that it's no fun to be DX'd with BC anytime, but to be DX'd in October was kinda brutal. Every billboard, every advertisement, every commercial. There was no escaping the pink ribbon.

  • orangemat
    orangemat Member Posts: 645
    edited June 2012

    Well I committed to signing up for the Avon Walk, THEN I was DX'd, so I had no idea what I was in for.

  • SelenaWolf
    SelenaWolf Member Posts: 1,724
    edited June 2012

    I hate that damned pink ribbon.  Just sayin'.

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