it's been quite a year

Lauren- I think in a lot of ways the exchange surgery was harder than the MX.  I had a lot of anxiety beforehand because this is the surgery that's supposed to give you back your "normal".  (I know realize it's a new normal.)  And a lot of the support is not there afterwards.  Not sure if everyone assumes by that point you're done, if they think it's no big deal because it's not cancer related or they think because it's just implants and women get boob jobs every day it's just a simple procedure.  For most of us it's the 2nd or 3rd surgery in a very short period of time.  I also found that after exchange, your hopefully last surgery, is when I truly started to process everything emotionally so it was a very hard time for me because I wasn't expecting to feel like that.  No one warns you about that part of having BC and it hits when most of our support system is at an all time low.  

Not sure if I posted this before but someone had written an article that said you go through all the stages of grief when losing a breast(s) as you do when you lose someone.  I thought it was well written.  Sorry if I've already posted this- can't keep all my threads straight!

Stages of Grief After Losing A Breast

by Becky Zuckweiler

Anticipatory Grief

Grief is an unfolding process that consists of five basic stages. We start the grieving process as soon as we learn that a mastectomy is a possibility and continue grieving long after the surgery is over. Grief for an impending loss is referred to as anticipatory grief

Stage 1

Denial
When we first experience loss we go into the denial stage, during which we may feel shock, disbelief, and numbness. The denial stage is nature's way of cushioning us from the bluntness of reality. Denial allows us to gradually absorb the painful truth. Many women who have grieved the loss of a breast describe their response in the denial stage as hearing the information the doctor is telling them as though the physician is talking about someone else. They find themselves thinking that cancer and mastectomies happen to other people, not them. This response can give you time to intellectually attend to the details, such as making appointments with the surgeon and oncologist, before emotion floods in.

Stage 2

Protest
As our initial shock wears off we move into the protest stage, a phase of intense emotion, including anger, sadness, and confusion. As the facts start to sink in, our thoughts set off an emotional reaction. Our fear of surgery and of cancer is probably foremost in our minds. Before we are even sure we have cancer, we often start to think about dying and leaving our loved ones behind. We feel sad for our kids, our partner, and ourselves. We often feel betrayed and angry with our body. My clients consistently ask me what they did to deserve breast cancer. This is the time during which we tend to blame ourselves or others as we try to make sense of the loss. Anger at God, our doctors, or the relatives who passed on the bad genes is very common during the protest stage. Besides feeling the need to direct our anger at someone; it is also common to engage in unrealistic mental bargaining, such as promising to go to church every Sunday if our breast is spared. This bargaining is a combination of denial and our need to feel that we have some control over the situation. During this time, it is also common to experience physical symptoms from stress, such as diarrhea, constipation, neck and shoulder pain, rest-less sleep, and fatigue. Your stomach may ache or you may find yourself with a splitting headache that makes it hard to think. Your body may seem to be screaming out a message of emotional pain

Stage 3

Disorientation
The third stage of grief is the disorientation stage. This stage is often accompanied by restlessness, confusion, and depression, as we have to change our routines and adjust to the changes the mastectomy has brought. We may also continue to experience the physical symptoms of stress during this stage. Disorientation is very natural after your chest has healed enough to begin to wear more normal clothes and you are feeling strong enough to go out in public. You can't just go to your closet and pick out an outfit like before. Throwing on a bra and a T-shirt is not an option at this point. Now, selecting an outfit means finding a top that your tender chest and restricted arm can tolerate, plus finding a way to fill in the missing breast. You have lost a breast, the freedom to wear a variety of clothes, the movement in your arm, trust in your body, some of your sexuality, restful sleep, and physical comfort, to name a few of your many losses. And even though most of these losses are temporary or become easier with time, making the adjustment to them is likely to cause you to feel confused and disoriented.

Stage 4

Detachment
Following the disorientation stage we move into the detachment stage. During this stage we tend to isolate and withdraw ourselves, and possibly feel resigned and apathetic. It is as though we have to go off quietly by ourselves and sit with our loss. Too much contact with other people at this time often feels like an intrusion and a lot of work. We often feel we need to be left alone in our misery to fully absorb our loss and get used to the fact that a mastectomy has forever changed our life.

Stage 5

Resolution
The last stage of grief is resolution and it is during this stage that we enter a renewed state of reorganization and acceptance. We are not happy about the loss or our breast, but we see that we can live without it. The resolution stage often brings us insight into our life and ourselves that builds character and produce wisdom. During the resolution stage our mood lifts and we find we are able to experience joy again. This is also a time when we become grateful for what we have and want to give back. Volunteerism, such as in breast cancer support organizations, frequently accompanies this last stage of grief. If you give yourself the room to go through the emotions, you will move forward into the resolution stage of grief where you begin to feel acceptance. You will want to take back control of your life by becoming pro-active again. Priorities become redefined and life goals are reestablished. Your overall reaction may actually be a blend of loss and gain. Initially it may have felt like a horrible loss but, as you move through the process, you discover some advantages that come along with your body changes.

Automatic Behavior

There is also something called automatic behavior that often accompanies the grief process. This is what is happening when we don't get our routine behaviors quite right and we start to feel like we are going crazy. As we process our loss we become distracted from life's little details, and this natural preoccupation results in poor concentration while attending to daily tasks. As a result of automatic behavior you may find yourself putting the cereal into the refrigerator and the milk into the cupboard, squeezing a tube of skin cream instead of toothpaste onto your toothbrush, or seeing that the traffic light has turned red but not really registering it, and driving right through. Your short-term memory will also be affected because good concentration is required for the memory to work well. Do not panic over these lapses. They are temporary. However, it is helpful to remember that automatic behavior can occur during the grief process, so you can safeguard yourself. When you set out to drive, remind yourself that you are prone to poor concentration and constantly remind yourself to tune into the "here and now." During this time you should stay away from dangerous machinery until you feel your focus and concentration return.

Each of you will go through the grief process in your own way. The stages of grief are meant to give a general description of the grief process, but in reality they are not as clean-cut as I have described. You will move back and forth through the various stages and can experience more than one stage at a time.

The significance you attach to your loss will determine how long your grieving process will last and how intensely you will feel it. Grief from losing a small purchase you just made may last only minutes, whereas a significant loss such as the death of a close friend, a divorce, or a house burning down may take years. Significant losses are often brought to mind by special events and seasons associated with the loss and these triggers can create new emotional pain. Most women take about two years before they report feeling fairly resolved about the loss of a breast. Your most intense grieving will probably happen close to the time of your surgery but you will likely continue to experience some grief from your mastectomy for the rest of your life. You may feel that you have just started to accept your loss just when something else seems to set it off again. It may be three years later, when you are faced with having to find an evening dress for an elegant wedding that you suddenly feel the tears bubbling up again. You may want to scream and stamp your feet at the unfairness of only being able to consider a quarter of the dresses because of the changes to your body. Twenty years after your surgery your best friend or daughter may be diagnosed with breast cancer and you may find yourself reliving some of your own pain as you walk through the process with her. All of these feelings are normal. Every woman grieves in her own way and in her own time.

Robo- Thanks for letting me know it was your quote!  I was scanning my threads trying to find the "author".  I think you should turn that into t-shirts!  

I'm having a hard time moving forward, too.  Started to process after exchange but 9 months later had to have a revision because of CC.  Started to process all over again and 6 months later got dx with LE in both arms and trunk.  Kind of feel like that shoved me back to the starting line, and since it's chronic with no cure, I just get to be reminded every time my arm or back swells, I have to wear these awful compression sleeves or I have to go to PT.  (The hard part is no one has even heard of LE so it's like you're telling them you're dealing with chronic hangnails or something.)  Hmmm, might be stuck at this starting line for awhile.  

I just read the long wonderful post on the stages of grief, 7 months now for me and I see I am sorta stuck in disorientation. And for us northern ladies, I have 4 different sets of clothing for each season, so I never really know what is going on with clothing. yet.

 Oh, and add to that my new "fat" clothing and my thin clothing which does not fit right now. shhesh.

Lauren, I had no nodes on my right side removed, but the therapist told me LE is not likely but possible, because of scar tissue. She said she would wear a sleeve and gauntlet for any air travel or usage out of the ordinary. Does anyone know about this? I tend to use my right hand for everything.

Kate, I have not had all you have had and yet I am stuck here too...I think this is very OK. I think the amount of trauma your body has been through it alot, so you are allowed to stay focused on it. And as you say, LE is a lifelong issue (I have mild LE) so it is always on our mind, learning new rules for a problem (LE) that doesn't want to play by any rules.

I love having this safe place for my thoughts, and to be validated by reading all of your thoughts!

You ladies are awesome. We really are here to listen to and support each other. I, too, have stopped talking about BC in my everyday world but get what I need here on BCO. With LE and a frozen shoulder I can't totally move on but I am working on it. A close friend was recently diagnosed and I was able to go with her to her surgery appt and take notes for her. I figured I would put my breast cancer 101 skills to good use! Something good to come out of all this is that I can help others get through it.

I personally think the running part is impressive enough but talking while you run: wow!

Orangemat- Running, talking while running, being able to turn off the BC dialogue- ALL accomplishments!!!

Hi all, thanks for all the insights.  So very helpful.  I just started Rads yeterday.    I can already feel the "Oh it's just radiation, we don't have to talk about BC with Denise anymore, thank God" from some friends and family.   Ran into an old acquaintance last night and we ended up going for Chinese food.  He totally didn't want to listen to anything BC and blew me off.  Made me feel very lonely...

Denise...... I know what you mean..I have my last rad today people are are always saying oh radiation no big deal so your done then right that's great! It is lonely. I still get herceptin every 3 weeks thru my port until December..isn't that treatment? lol..echo-cardiogram every 3 months to monitor the herceptin.then the followup mammograms.oh yeah and tamoxifen..I personally don't think I'm done! I still feel the need to talk about it. i have my ups and downs that's why i like it here I can vent and people get it!

Kestralgirl, Ouch with your job situation, I hope someone knowledgeable comments on this. What i want to say was I found myself in the same position, all of my friends and at the time co-workers are very health conscious, so they kept looking for ways that I "slipped up" or perhaps some slight on my own part as to why I got cancer. It drives me crazy.

 ***crazy!!!*****  ok sorry for that shout. I just want to come out swinging if one more person says to me "I bet you wish you would have drank more green tea".

I also think you are right, that if there is no outward sign, people rush past the cancer stuff. I have lost both breasts that were a 38 c and I chose no recon, and sometimes I feel very much like "why should I have to wear fake boobs so the other person doesn't feel uncomfortable?" (From Barbe on another thread) They hurt me, even 7 months later. The fake boobs that is.

And you made an interesting point, some days I feel past the grieving stuff and then I find myself back at stage 1...losing breasts is a difficult thing to process. For me anyway.

I had my stage 2 surgery today (had a DIEP reconstruction 3 months ago) and even though I was keen to get it done and over with, the closer the day came the sadder I got that I was having to go through more surgery and another recovery period. I feel a bit

like I have been run over, again.



I also find, and I accept I am probably being unreasonable, that I get annoyed at people telling me how wonderful I look. As far as I am concerned it is only clothes deep - I still feel like a patchwork rag doll when I see myself. A year ago I would have been thrilled at the comments! I would rather have my old body back with all it's imperfections than this version that does not feel like mine. It is very hard to explain to someone who hasn't been through something so traumatic, what a loss it feels like.

I love this thread! You are putting my feelings into words!

SuzyBlue - I'm with you when people tell me how good I look - I ususally respond with "Thank you, I'm working really hard at looking good". That seems get me quickly past folks that really don't want to know anything about what I am going through. It's easier for them and probably for me, than talking about how hard I'm working to get through the cancer treatments and keep this disease at bay in the days and years ahead.

Another one that bothers me is when people say about the most recent surgery "It's just reconstrution, right?".

I know people mean well but the whole "You look really good!" thing bugged me, too.  All I could think was- Boy, I must have really looked like crap before.  A couple times I responded, "Yeah, but you haven't seem me naked".  

I think the hard part emotionally about the last recon surgery is the realization that this will be your new normal.  Prior to that there was always something on the horizon that I thought (unrealistically) was going to somehow transform me back to my prior self.  When the last follow up was done, and there were no more appointments on the books, I was feeling somewhat abandoned and shell shocked.  I realized there wasn't going to be any magic transformation.  That this truly was my new normal.  It took me several months to wrap my head around that.  

I have a friend who had uterine cancer and could tell she didn't get why I was having a hard time moving on when she had no problem.  Hmm, maybe because she doesn't stand in front of the mirror every morning and see the loss of her uterus?  Or feel a piece of plastic in its place? 

orangemat- Interesting analogy about hip/knee replacements.  I hadn't thought about it like that.  I guess for me those would enable me to do a certain thing (walking) and breast implants are supposed to enable me to feel a certain way (whole, feminine, attractive).  Unfortunately, they seem to have the opposite effect yet can't fathom not having them either.  I admire the bravery of women who choose to forgo recon but afraid I've been brainwashed by society, and the influx of Victoria Secret catalogs to my mailbox, to consider this possibility.  I never could fathom women voluntarily signing up for this, either.  (Maybe they were afflicted by the VS fever more than I?)  Just know, though, that for me BC has left me feeling less authentic and am not sure how to let that go.  Maybe by thinking I'm more Bionic Woman than Barbie?

kate...I'm sad to read that you feel less authentic now than before bc.  I feel that authenticity comes from within a person...from deep inside their soul and spirit, not from the physical self.   I have read many of your posts, and I would not guess that you feel this way. You are so willing to help others and share of yourself and experiences.  To me, you seem to be a very beautiful woman with a sweet and fearless spirit.  

For me, after what I have been through during the past year, I think I feel a deeper sense of authenticity.  I know what is important in my life.  I don't sweat the small stuff as often.  I say what I mean and mean what I say more often too.  There are days when I am still sad about loosing the life that I had prior to my dx.  I feel beat up some days.  Sometimes I feel very defeated when I look at the "new me".   But, then I remind myself that I am so grateful to have passed through this year relatively intact.  I am very grateful that I was able to escape the rigors of radiation and chemo.  The surgeries were hard, but I had a wonderful team of doctors who made me a pretty decent breast.  I feel much better about it on the days that I am pain free, which thankfully, are happening more and more frequently now.  

Hang in there Kate and hold your head high.  I appreciate you being on these forums and sharing what you know with all of us.  Thank you from one authentic being to another.