I look for other flat chested women. A rant.
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Dawn, So very well expressed, I agree 100%. Like you, I may check in here several times a day, it is my "outlet" for all the emotions I have to deal with still. Sometimes I post, often I just read and feel validated.
I am thankful for all of you.
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I too read often, but do not frequently post. I am getting more and more comfortable going without. I am looking forward to the cooler weather when I can go without even at work. I used to wear a bra very seldom anyway, particulary in the heat, and it has always sent my dd , now 14 , screaming through the house. Today we went out, me in a loose tank, no bra no foob and my hair abour 1/4 inch. She was like Mom, really. YEP, really! I hope she is learning that there is so much more to life than appearance.
All are so thoughtful , I gain something everytime I read here. And as much as folks my try to get it, or think they have, even the best intended, let them walk in our shoes. It is a bumpy path.
Gentle wekeend to all
Nel
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Can I join your club? I had a right full mx with lymph clearance last september and have tried using a prosthetic but find it heavy, so now I dont use anything and go natural, its hot over here in england at the moment and I have been wearing my vest tops with no bras, it is heaven, no bloody bra! People do look and stare, I just stare back and they soon look away, I think because its only one of my breasts thats missing its more obvious that I'm a breast cancer patient. The hospital wont offer me a recon because I have secondarys but too be honest with you I dont think I will bother even if they did, I hate hospital and I hate operations, no more of that for me will have to stay the way I am and others will just have to accept it. Have you checked out the scar project here's the link http://www.thescarproject.org/.
Love and light to you all
sarahlouxxx
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Linda,
I am right with you when it comes to this: "Some days I would rather not hear some of the stories, but that's OK because that's what the group is for, and I accept those stories and respond as best I can. Sometimes I am comfortable sharing my own stories, sometimes not."
I always gauge my needs before attending a support meeting, for instance. When I'm not in the mood for rehashing, or am not open to other discussion on the topic, I don't go. Sometimes the support is wonderful; other times it feels stifling. But then, that's also life, the way it is with most things, a bit of waxing and waning. I love how you listened to yourself.
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Dawn, your comment -- "after all, it is all over for them, and they have moved on. Why can't I, seems to be their unspoken question" -- resonates. Again, it reminds me of how people respond to loss in general, at least here in the US. Once upon a time we had mourning traditions, trenchant ones. Those suffering loss (of any sort) were not told to 'get over it' or 'move on'; they were expected to mourn, to mourn fully, publicly even, and people were cognizant of the fact that recovery took time and was an ongoing process. Not so in modern society.
I understand that life proceeds for others and never expected their lives to stop for me (and that acknowledgment is not meant to indicate that I think any one else who has posted on this board expects anything of the sort). What grates my conscience, however, is when others place unrealistic expectations on the one suffering. I realize that most of the time these unrealistic expectations arise from ignorance, or habit, but sometimes they are the product of cowardice. Unfortunately, our society has skewed our orientation toward anything considered 'negative' (e.g., sadness, disability, illness, loss, etc.), thereby creating a populace that cannot handle confronting and moving through (rather than beyond) pain, fear, sorrow. Loss, pain, disease and suffering are, for the most part, hidden from view. Consequently, most people are ill equipped to deal with it, and being ill equipped expect others to assist them in maintaining an antiseptic experience of reality.
My eyes were opened to the flipside of that reality early, first by widowhood and then, four months later, my son's craniofacial birth defect, for which he was placed in the hospital for a month to undergo a tracheostomy (he was born four months after a car crash claimed his father's life, so I was grieving both the loss of my husband and the birth of what I hoped would be a healthy child simultaneously). As we (my infant son and I) prepared for that trache tube, I was given a tour of babies and older children with tracheostomies, many of them on ventilators, who, having been abandoned by their parents, permanently occupied an entire floor of a prominant hospital in Chicago. I couldn't believe it. I was stunned. All these children, suffering, hidden from view--hidden from my view--while life carried on outside as if all was 'normal'. Normal is relative, deceptively so.
Most people, but not all, move on because they cannot withstand the pressure of any experience which deviates from their sense of normal. I do not begrudge them this need. It is what it is. So long as they don't project expectations onto anyone else as a result.
Well, time to get off the soap box.
Love and peace to all. And I truly mean that.
Thankfully, there will always be those who do understand and who do know how to extend support and comfort. Ah... life...
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Sarah, yes, welcome to the group we all wish we didn't have to belong to, yet are so blessed to have each other!!
I think right now I am in a difficult place where somedays I am very strong, and some days I am still a bit broke by the post trauma of it all.
Annemarie, my goodness. My sympathies to you losing your husband. And now your experience with your son. And your cancer. I too am stunned by your telling us of so many forgotten babies-children. I should not be surprised, I was a special education teacher of the profoundly impaired and we sure do a job of hiding those special children, something that always gets to me. but I guess I had hoped over the years families were more accepting. "Normal is relative, deceptively so"...your words, and I am sorry.
I hope your son is gaining in health and growing in love. And you too.
On a lighter note, in reference to your words, when I wore my silicons one time, I saw men ogling...hmmmm...they were ogling silicon and 2 nasty scars!! Normal is deceptive indeed.
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Crystal,
My son will be 19 this October and is doing very well. We're getting ready to move him into his college dormitory next week. Can't believe it. And can't believe it will be twenty years next June since his father passed. Somedays, as with all things, it feels like only yesterday. My son was born with a craniofacial abnormality called Pierre Robin Syndrome. His lower mandible matured enough by two years of age to have his tracheostomy removed and his cleft palette closed. Those two years of tracheostomy care were the longest of my life. Thankfully there was an extended hiatus between tragedies (death of husband, son's trache on the one end and my breast cancer on the other). Breast cancer, work, and single parenting was as much as I could juggle at one time.
About the foobie ogling, LOL! I must confess, I smile knowingly to myself when I catch men doing the same. Usually happens when I'm in the checkout line. It is rather funny.
p.s.: The nurse that gave me the tour of that floor told me that the children were there mainly because their parents couldn't accommodate the gravity of the illness (that is, the care involved) or couldn't afford to care for them. Others were simply abandoned.
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I have been traveling today but had some time to read these posts. So much I wanted to say but it was too difficult composing while in car. Hope to catch up this weekend. You're all just terrific. Oh, and I read a bit from your link, AnneMarie, and found it touched close to home. I've known the two years of chronic pain wore me down, and I have noticed an unfolding and feeling more relaxed over the past year since deconstructing and becoming more comfortable in my body again.
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Sarah, welcome! AnneMarie and Crystal, you both have such beautiful ways of expressing some of the ugliness of life. There is so much love and respect for each other here, and that is why I read daily, post occasionally. And there is also a lot of humor and downright bawdy comments that I get some belly laughs as well.
I have to share some of the pastor's sermon from this morning. The message was that practicing an activity over and over makes us better at it; practicing good makes us better at being good, practicing bad makes us better at being bad.
The other part of the message was that it's OK to be angry - but interpreted as "being outraged at wrongs" - such as injustice, poverty, etc. It should prompt us to address the wrongs to help those who are unable to stand up for themselves.
So, I know that by sharing experiences, lovingkindness, and acceptance of each others' experiences, we are practicing "doing good" and we are sharing the outrage at the injustice of breast cancer and its effects, and hopefully helping all of us to get through it.
Now, in regards to the silicon foobs.... based on comments from AnneMarie and Crystal above, I have been re-thinking that perhaps I should get some a size or 2 larger .... haven't had anyone ogle me (actually NEVER as I never had more than an A- cup to begin with....) - so am considering trying out a B or C for fun.... OK, so probably not, but the image has me smiling.... LOL0 -
I'm almost three weeks being flat chested and loving it except that my belly sure looks bigger. I have pounds to lose and I can see exactly where they are! The boobs were good for hiding a belly.
Otherwise, life without boobs and bras is really good. Bought some new work tops that will go with/without foobs. I'm not going with silicone - they are heavy and cause me shoulder pain (of course mine were sort of large). I am going to use the fiber foobs for events/times where boobs are required.
It's just too much to fuss with presenting with fake parts and so freeing to go flat and braless. I am on a mission to lose the belly so I can burn the foobs! LOL.
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I tried to post last night but was just too tired.
The thing that happened yesterday that made me want to post was that I wore a dress for the first time in about 16 years. Not for any kind of event, just did it. My daughter (5) was so excited to see me in a dress that she loaned me her shiny pink plastic headband. I took it off when we got to the restaurant, but I was very touched. I also kind of liked the look. My haircut is similar to Mellie's - I can do anything to it except make it grow. Three years ago, I would have snickered at the idea of a headband. It's very odd, but flatness has made me both more masculine and more feminine in appearance - I can go back and forth.
Last night I didn't post because reading the last few posts just left me with too many thoughts to sort out while I was tired. I cringed at the thought of someone singing over another's story. I, too, reached a point where I didn't want to be in a support group listening to someone's chemo story or giving pointers about how to get through. I don't think many people do that forever. But for each of us, it's our own experience, it's not stale, it's a horrible thing we have to deal with. I am not a particularly warm and fuzzy person, but a lot of women who only know me a little have approached me for advice or just talking. That's fine with me. I had that need too.
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One thing that really comes through in these posts is the complexity of needs, emotions and self-perception that breast cancer leaves in its wake. Even though that complexity can be difficult, painful (in multiple ways), and confusing to navigate, we are more beautiful as a result of having to wrestle with it. Of that I am certain. Such penetrating beauty here. Perhaps when people shy away it's because the unitiated can only withstand so much beauty. Our lights must be shining too brightly for them.
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Linda,
I agree that anger can be constructive. I believe, as the sermon suggests, that it is a great initiator, a call to action, a healthy response to right a wrong such as an egregious injustice or maltreatment of a person. A relative of mine who is a Franciscan friar wrote in a book on St. Francis that, as children of God, we should feel free to confide in God all our feelings, the good, bad and ugly. To paraphrase, he said that when we felt angry to go ahead and share it with God. He's neither proud nor narcissistic; he can take a our criticisms. He understands our anger, our fear, our doubts. Shake a fist. Feel free to declare your uncertainty, your feelings of betrayal. Like any child does, we get mad at our parents from time to time. I loved his take, that with God there is room for the full range of emotion.
Reading his take on feeling and confiding our anger gave me such a sense of relief and peace. I could be angry and God still wouldn't abandon me.
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Tina: Forgot to mention, I'm a big Rumi fan. Love your signature quote!
To everyone, because I like to represent myself as authentically and honestly as possible, I feel it is important to acknowledge that I'm sprititual but not religous. I respect all religions and have followed an eclectic spiritual path, beginning with my upbringing as a Catholic (comes with being Italian). I have actually considered converting to Judaism several times in the past twenty years, and may do so one day. For now I take refuge in my personal relationship with spirit (or God). My living room is a trove of icons, some Christian, some Hindu, and some Buddhist. Each reflects aspects of my path and understanding.
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Just got back from Vermont where I've been venue shopping for with my DD for her wedding next year.
Will be ordering tees from Vista Print, but trying only to do it to order. Just designed THIS FLAT DON'T NEED FIXING - And it looks cool!!
We should start firming up plans for Flat Fest. Idea of numbers would be good.
AnneMarie: I also consider myself spiritual, not religious. Starting doing some reading on Kabballah, which is the jewish mystical path. Startling similarities to parts of Buddism, IMO.
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So many thoughts about all that's been said here. I don't know how one can be a complete person without the willingness to experience the broad range of emotions that comes with life's experiences. If you cherry pick the emotions you consider to be positive and only allow yourself to feel them, pushing alway the others, I think that is rather shallow and cowardly. It also limits your ability to understand and fully know others, to have compassion for your neighbor, coworker, family, or a stranger. Or to enjoy art, literature, music and nature. While I believe it can be helpful to "fake it until you make it" at times, in general, the whole positive thinking movement leaves me cold.
Here is a poem I found almost immediately after I had my bilateral mastectomy. I have read it many times and find it just as powerful today as I did over four years ago. I think you guys might like it, too.
Naomi Shihab Nye, "Kindness"
Before you know what kindness really is
you must lose things,
feel the future dissolve in a moment
like salt in a weakened broth
What you held in your hand,
what you counted and carefully saved,
all this must go so you know
how desolate the landscape can be
between the regions of kindness.
How you ride and ride
thinking the bus will never stop,
the passengers eating maize and chicken
will stare out the window forever.
Before you learn the tender gravity of kindness,
you must travel where the Indian in a white poncho
lies dead by the side of the road.
You must see how this could be you,
how he too was someone
who journeyed through the night with plans
and the simple breath that kept him alive.
Before you know kindness as the deepest thing inside,
you must know sorrow as the other deepest thing.
You must wake up with sorrow.
You must speak to it till your voice
catches the thread of all sorrows
and you see the size of the cloth.
Then it is only kindness that makes sense anymore,
only kindness that ties your shoes
and sends you out into the day to mail letters and purchase bread,
only kindness that raises its head
from the crowd of the world to say
It is I you have been looking for,
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Tina, thanks so much for sharing. So much truth. It took my cancer journey to wake me up to truly understanding love at a much deeper level than I was capable of before. I have always tried to be kind and loving, but always GIVING, but not always RECEIVING - it takes both directions to allow us to truly understand it, and what I have received has opened me to many more possibilities of life and love.
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Thank you Tina, the poem is lovely and worth printing out and keeping.
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Boobsinabox, I was just re-reading some of the posts, and your comment about "whining" hit a spot with me. I feel like I whine a lot, but I am beginning to realize most of it is what I am telling MYSELF, not actually voicing it to others all that much. I do think I have complained about my pain, neuropathy, fatigue, etc etc etc to others who asked, but have found myself more recently just saying everything is fine - that's what they want to hear, yes, they have moved on, so I must have moved on by now also.
Today, I saw my PCP/palliatve care provider, and during the intake with the nursing assistant, she asked me about my pain, and I did the usual "well, lots of things hurt, but I am dealing OK with it, and feel like I am whining all the time." She said "YOU ARE NOT WHINING! Anyone who says you are needs to walk in your shoes for a while. People need to not be so judgmental!" I was almost in tears with gratitude toward her.
I may have asked on here before, but has anyone had any issues with truncal LE or prolonged pain across the incisional areas? I had infected seromas after BMX, and have never been without pain since then, and I noticed a little "puffiness" where the incisions approach each other in the middle of my chest, have lots of burning pain and sensitivity. I am scheduled to see an LE specialist for evaluation on Friday to see if that is what it is. Hopefully not - hope it's just angry nerves healing. Soft soft t-shirts are the most comfortable for me, and I wear them in the pool and out!
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Tina,
Absolutely love that poem! You've turned me on to a new poet! Thank you for that, as well.
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Linda,
It tears at my heart to hear your pain. The side effects of BC can be difficult to discern. I almost never know when it's just my body or a side effect. So many symptoms fluctuate. For a while after my BMX I had shooting pains across my chest, but that was definitely due to innervation. After chemo, I had some peripheral neuropathy, but that improved, notably by increasing my vitamin B intake. I have some neuropathy left in my right big toe, but that's about it. I do get twinges in my calves from time to time, but it's barely even a distraction. I'm keeping my fingers crossed that the pain at the incision areas is due to innervation and will end once the nerves have reawakened. Keeping you in my thoughts and prayers. Hopefully you'll find relief soon.
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Linda,
I'm glad your PCP was so understanding. It isn't whining, and if people ask, they should care to hear the answer. Many of them don't. They think they are being polite. Or they are curious, but not if it takes too long. Because they have no clue what a mastectomy or chemo or rads or lumpectomy or LE involve, they don't realize what they are asking. At this point, if I can avoid being asked, I am pretty good. It's when someone asks, and I think they really want to know, that it hurts to realize they didn't really want to know after all. No one ever actually said I was whining, but I realized that was what she thought when one relative immediately began talking about another relative that "never complains" and who's always in terrible pain. I had just thought I was answering a question about why I can't do something I used to be able to do. Now I just try to be inconspicuous in family settings.0 -
Linda. I am one year out from surgery and I have pain in my chest. I try to connect it to specific events, but. It gets better and better. Some days my incisions hurt quite a bit, some days I can almost forget. I also get some puffiness, under my arm, in my armpit. I think I have some Axilarry Web Syndrome, though I swear my breast surgeon and doctors have a knee jerk reaction of, 'No, that is unrelated'. I lifted my arms straight up, asking, 'Do you think I have Axillary Web Syndrome?' Her response? 'No!', then, 'Except maybe right there.'
Anyway, the underarm thing? I try to figure out if it is the web that I am feeling or LE. I don't know. I can't tell. I do feel as though something 'folds' under my arm. I don't know if it is because my scar is tight, I don't get it.
I am sorry that you are having a hard time.
Such an interesting turn in the conversation. Breast cancer softened me. It opened me to compassion, for myself and for others. I now forgive myself more easily, I step away from worries, whoas and regrets more easily. I always thought I was a compassionate person. But cancer made me learn that to be compassionate, you must be compassionate to yourself.
I am not one to look back and regret, yeah, this disease stinks, but. I miss having my breasts, but. I am healthier now. My husband and I are closer. My art is getting better and better. The things that matter to me, really matter now. That is somethng to be grateful for, even in the face of this crappy disease.
I love reading your words AnneMarie, thank you.
I am grateful for this group, that is for sure. It is quiet, like my mind, but I get response like I cannot from my mind alone.
As far as going to a swimming group to connect with breast cancer survivors. Huh. I originally went thinking perhaps this is a good way to connect with survivors without going to a room and forming words to encapsulate thoughts, perhaps the physical will create a different sort of connection. Yes and no. One woman did make the assumption that because I wasn't resconstructed, I wasn't finished with treatment. But that is just ignorance, an inability to see beyond personal assumptions. I sometimes think it is unfortunate that I have such good filters, because I could say some stuff right back, but then, where would my compassion be? And I am sure that if she knew that she had bothered me that she would not be OK with it. That helps.
I will continue to go to the swimming group, I have made a commitment to myself to go for 6 weeks, twice a week. It isn't excerise, but it is stretching and movement. My frozen shoulder is still releasing the last vestiges of itself. It feels good to do it, so I will continue. But I will use this group as my support..0 -
The swimming sounds wonderful! I can almost feel the stretch in my mind. I haven't had a chance to go swimming all summer. This remodeling work is eating up all my spare time. But it's a good workout.
Funny, I always assumed that my flatness would be implicitly understood by other survivors, reconstructed or not. Does anyone else on here attend a support group? I'm the only one in mine who didn't have reconstruction. I can't wait to meet others someday. By the way, I'm learning so much through all of the stories shared here. I am very grateful for each and every one on this thread. The candor is enlightening, a true gift.
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Mel,
Your vitality jumps off the virtual page! Puts a big smile on my face to read the positives, deepening intimacy, appreciation, creativity and compassion. The world needs more of it. Glad you're bringing it in spades. I bet the feeling is palpable in your company and contagious! Such good stuff.
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Boobsinabox, AnneMarie, MT1 (Mel?) - thank you for such supporitive responses. Yes, the conversation here has definitely taken a bit of a turn away from the rant about flat, but so enjoyable!
I have a mindfulness-based cancer support group meeting this afternoon, and I am the only flattie there. I have looked, and it is obvious that not one other woman is going flat. I do think a couple may use prostheses, but quite a bit of the frustrations that some of the woman have experienced has been due to the reconstruction process, complications, failures, pain, etc.
One of the ground rules for this group is "no giving advice" - we do a short silent meditation to open (may be listening, breathing, visualizing, walking, etc.), then reflect on how our week went and what is true for us right now. This is where I am willing to listen when others need to talk, very different from the public gatherings where survivors speak and give their wonderful pep talks. These are not pep talks, they are true stories of real women. Some of them are painful, but many of them are fun, funny, insightful - we have developed a very real bond and tolerance for each other. Sometimes I share, sometimes I don't.
And yet I find a couple of groups here to be so top-notch, and don't know what I would have done without all the "BC sistas" here - I think it is because there is a little more anonymity and there is always SOMEONE available EVERY DAY. I have so enjoyed the depth of discussion in this thread in particular. It has morphed from a rant into some very significant thinking, and I love it! Thank you thank you thank you!
MT1, I had axillary cording from the very first week after surgery, the NP blew me off when I told her the pain was "different" than surgical pain - finally saw the surgeon a week or two later and she referred me to a PT who has lots of experience with this - the PT told me that it most definitely WAS cording, and she did myofascial release for several months, and I got great results. The cording is very minimal now, pain from that mostly gone (at least manageable) and I have great range of motion. I don't know where you are located geographically, but you might ask for PT referral - mine has LE specialty training and said cording is NOT LE, but is related to scarring of the lymph vessels, and while people who are overweight are at higher risk of LE, thinner people have higher risk of cording.
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Mel, So very well expressed. Thank you. I too still have "discomfort". I am 27 months out on one, 7 months out on the other. And yes, something feels like it folds under my arm. I feel validated when others tell me they still have pain or discomfort, because in the beginning, 27 months ago, I met no one that admitted to this.
I do not attend a support group, I could, but their issues were about reconstruction or chemo...and were not my issues. They were respectful though of my own needs. I do attend a meditation class every week which helps tremendously.
I too am amazed by the support I get here. I am thankful, I don't feel alone, someone else "gets it".
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Linda,
I'd never heard of axillary cording. I'll look it up, but would you mind describing it a little bit for those of us who remain ignorant?
Crystal, I too feel out of step with my support group. It's one of the reasons I no longer attend regularly. I do when someone says they really need me there.
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AnneMarie, this is axillary web/axillary cording:Stepup-speakout is a great website. A couple of the truly committed, compassionate and really well-educated women on the lymphedema board put it togther. I found SUSO way before these boards, when I developed cording a couple weeks after surgery. I was really freaked out by it. At the time, I was on high dose Benadryl from a pretty bad allergic reaction to one of the adhesive bandages used when my port was put in. Benadryl not only makes me groggy and cut-off from the world, it makes me paranoid. What an awful time that was. I saw a certified lymphedema therapist (they also know cording) who helped immensely. Then I developed a much rarer complication during radiation - one of the little cords got very thick and tight. It was a beast among cords. 21 months after my initial surgery, last April, I had a piece of the thing cut out. Tiny little procedure with good results.Why do we get blown off so much during treatment? I am so sorry that happened to you Linda and Mellie. That is such a common experience over on the lymphedema board. Cording, lymphedema, pain: these things are one hundred times worse to me than losing hair, yet it seems like a lot of providers don't even want to acknowledge them. I don't understand it. I've seen a lot of comments like, "It's as if he wanted me to just be grateful he'd gotten clear margins."Mellie, I don't know if this is what you're describing or not. I felt like I had a fold of thick fabric under my arm for ages after my surgery. I do have lymphedema, but it only seems to be in my forearm and I felt that sensation worst right after surgery, so definitely before radiation. It slowly, slowly has gotten better.I did try three support groups. Two were specifically breast cancer. Neither of those was a good match for me. I pretty quickly got past wanting to talk about chemo and losing hair and all that. That phase of the experience doesn't last too long anyway. The stuff that's been hard for me has been learning to live with the fear that I'm not going to see my children grow up, learning to live with the loss of my nipples, learning to live with my lymphedema, learning to live with this permanent discomfort and tightness reminding me I am damaged. I found a group that was open to survivors and caregivers of all sorts of cancer. That group really helped me. We didn't get hung up on the specifics of treatment because our treatments had differed. What we had in common was the loss of our "mortality virginity" as one of them put it.After a while, I stopped going. I missed dinners with my kids. But I may go back.In some ways, I feel like living flat is also a decision not to hide that I have lost that mortality virginity. I can't go back to who I was before cancer.0
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Annemarie, cording is when lymph and or blood collapse and become sclerotic. In my case it was veins that collapsed as a result of the chemo (according to the onc). The sclerotic veins become stiff and contract and that is painful as well as unpleasant. In my case it resolved with daily stretching prescribed by the PT. By "resolved" I mean it stopped hurting. The veins are still dead.
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