STEAM ROOM FOR ANGER
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runor, by the time my onc nurse was de-accessing my port yesterday afternoon, it was 4:30. They chemo room had gotten quiet. I was reading BCO on my phone and she was reading over my shoulder. She goes HA, Rhinoceros. She was reading your post. So you gave an oncology nurse in New Mexico a chuckle. The Pet scan tech jerked her head around to look at me right when I said, "no one around you gets it." Yeah. Goosebumps ... or rhinoceros bumps. Personally, I choose heart attack while doing the polka.
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Dear BC:
I had a nurse navigator tell me when I was diagnosed and asked about the BC support group at the hospital where my surgery was performed that they were a "close group and she felt I would not be a good fit." Who knows, she may have done me a favor, but it just struck me as so cold and uncaring. So I did not try to join that group but she did not recommend another group either within their vast multi-hospital system. The next nurse navigator never reached out and when we did make contact, I initially thought she was the department administrative assistant, not an RN.
The next group was recommended by the BS social worker who was an integral part of the team that lead the group. I made a second attempt at a BC support group but this one made me feel like I was crashing a sorority rather than a place to share one's reaction to dealing with the horrors of a BC diagnosis. I tried on more than one occasion to make a connection but left feeling saddened by hearing of other's ongoing battles and envious of those who seemed to have nurse navigators, positive experiences with surgery and radiation and interactions with support people who seemed to want to help. This only deepened my sorrow because I had not had this experience.
The RO felt I had PTSD and offered an antidepressant which I respectfully declined. I was living a nightmare and dulling my senses with an antidepressant seemed a way for the RO to brush off the reality of my radiation experience which was a continuation of my nightmare. Initially I felt the RO was an advocate, only to later learn that this trust was misplaced.
I have had both my RO and MO both downplay my experience and tell me about "patient's who are far more worse off". I realize that in one sense I was lucky to be diagnosed early but I have not been in the higher percentiles for any of my results except the oncotype. My risk factor for BC adjusted for my age group would be 1 in 26, so I got to join the club. Only 6% of BC are left lower inner quadrant and again I got lucky. The chances of my biopsy being positive were < 20%, and again I got the shi**y end of the stick. I could go on and on with how my percentiles are not on the positive side.
It was the cumulative experiences of a unsympathetic radiologist who scared the living sh*t out of me by insisting that I could not leave the department after my ultrasound without a BS appointment because "my cancer could kill me". I was in tears and mentioned that it was Christmas in a few days and he told me "cancer doesn't respect holidays" with the implied message I needed to get over it. He was not soothing at all and the poor tech looked horrified. Word of advice, do not have a breast biopsy over any holiday because the wait for results is prolonged by the hospital staff being "off" so the wait is even more interminable. Unfortunately biopsy specimens can wait for interpretation. So it was a case of "hurry up and wait" so my Christmas holiday was the last time I really celebrated and it was for the benefit of my family. I have not celebrated since and find this time of year to be overwhelmingly anxiety producing. So thank you for reaching out and validating my experience. Betrayal
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Jaycee, runor post made me cry and laugh at the same time. I like the polka too. I will take some classes because if you have to do it, you have do it good"
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I heard the breast center I used had a nurse navigator, but I never met one. All the other staff were so helpful about moving me through the necessary appointments that I still have no idea what a navigator does. I was given information about BC groups, but I just can't do that. I've had cancer before (endometrial/uterine) and I was pretty much sent home after my very thorough hysterectomy and told to heal and get on with my life. No support groups. I've had another cancer surgery since the lumpectomy; a total nephrectomy squeezed in between a re-excision and radiation. No support groups for that, either. So even though I have had breast cancer and treatments, I also kind of resent the amount of attention and support it gets compared to other cancers, and I refuse to be part of it.
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I always think of the people on this site as a support group.
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Meow13 I would be lost without this site. I've gotten so much information here. Being that 1 in 8 women will be diagnosed with breast cancer we need as much support and information we can get.
I was listening to music while walking yesterday and Lay Down by Melanie played. I know the song was written about war, but these lyrics made me think of this site.
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I’m so sad that so many have no good in-person support group available. I’m one of the lucky ones that has a good support group in person plus this website. In the next town there is a non-profit cancer resource center funded by donations. It started as a breast cancer resource center and has now expanded to include all cancers. It was started by the parents of a young girl who died of breast cancer at age 26 and had no local resources beyond her doctor. She just wanted someone to talk to.This place offers everything you may need - hats, scarves, prosthetics and undergarments, haircuts, wigs, yoga, art classes, support groups for all stages and for spouses and children, and activities for them too. Special presentations from speakers and lots of helpful people. My group is all stage 4 like me and it’s so nice to be with others that get it, how our disease is so similar but each different and we learn from each other.
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I too look to bc.org as my support. I needed it a year ago when getting into radiation treatment almost pushed me over the edge. I found the Radiation forum and started there. Again, I think sharing experiences is helpful as we all "get it!"
Beesie, hitting the like button for your sword analogy.
My sister and I had the same nurse navigator. My sister loved her and asked her to run her life for her. After I was diagnosed and had my 1st consult with BS I had to go back in for a biopsy of my right breast. Cindy (the nurse nav.) was on duty at the radiology dept. that morning so I got to meet her. I met with a different Dr. that morning, and after she read my MRI she saw another spot on the outer right quad that looked suspicious. After she left Cindy took me into another private office as she is now assigned to schedule me for another biopsy. They had a cancellation later that same day and she left it to me to decide if I wanted to do this 2nd biopsy then, or she would schedule for another date. She could see and sense the absolute terror on my face. She cried with me. So, I said we have to know what's going on let's do it. I had 2 biopsy's on my right breast in 1 day. Ouch! One in the mammo machine and one MRI guided. The 2nd bio was performed by the Dr. I had 2 weeks earlier for my left breast. She was surprised to see me there again. If it wasn't for Cindy, and my sister for being available to meet me for lunch that day in between appointments I would have lost it-emotionally. If it weren't for these 3 Dr's. (BS included here) putting their eyes and expertise on my reports as this was not my cancerous breast, I may not have felt safe and secure. I know now that I had a very thorough and complete work up. In fact, after the BS saw and read the reports of that day, she decided she still didn't like this area of tissue and I had another sample taken out during my surgery. Thankfully, my right breast has been diagnosed with every type of benign condition known to man.
Hope you don't mind me sharing a good experience here in the steam room. I feel it's important too, no use wasting energy on the bad ones. At least not today. I'm feeling good today!!! Pray you all are too! Thanks for listening.
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ctmbsikia, you were lucky you had that support when getting news of another biopsy. I don't think medical people realize how much we are thrown by an unexpected change. Again, back to my Pet scan this Wed. It was scheduled for 3 PM, later than usual but fine. I had known about it for a week. I planned my day around it being at 3. I got a call at 11:30 asking if I could get there at noon. They had had a cancellation. I don't know about anyone else, but that makes me freeze if not panic. Everything goes out of kilter. Yes, I could be there by noon but I am not psychologically prepared to do that. I didn't say that (so as not to sound insane) but made up some excuse. Getting my port accessed in time would have been tricky so I used that. I probably could have done it but rushing is not something I am good at anymore.
My support is right here at BCO. No nurse navigator. My MO's office has a social worker and nurse navigator but none have been offered to me. I see her talking to patients in the waiting room and wonder why not me? I guess they think I can handle things on my own and they don't want to scare her off. The BC support group in town is all women who had BC 20+ years ago and know each other. It's like a social gathering. They have speakers talk about things like nutrition and exercise. Never a stage IV topic. Once, a BS talked about reconstruction. Not helpful to me.
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ctmbsikia, you were lucky you had that support when getting news of another biopsy. I don't think medical people realize how much we are thrown by an unexpected change. Again, back to my Pet scan this Wed. It was scheduled for 3 PM, later than usual but fine. I had known about it for a week. I planned my day around it being at 3. I got a call at 11:30 asking if I could get there at noon. They had had a cancellation. I don't know about anyone else, but that makes me freeze if not panic. Everything goes out of kilter. Yes, I could be there by noon but I am not psychologically prepared to do that. I didn't say that (so as not to sound insane) but made up some excuse. Getting my port accessed in time would have been tricky so I used that. I probably could have done it but rushing is not something I am good at anymore.
My support is right here at BCO. No nurse navigator. My MO's office has a social worker and nurse navigator but none have been offered to me. I see her talking to patients in the waiting room and wonder why not me? I guess they think I can handle things on my own and they don't want to scare her off. The BC support group in town is all women who had BC 20+ years ago and know each other. It's like a social gathering. They have speakers talk about things like nutrition and exercise. Never a stage IV topic. Once, a BS talked about reconstruction. Not helpful to me.
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Betrayal it sounds like you had no medical person who even was at least helpful to you other than the basic care. Only my BS was supportive and caring. It was a woman and she even gave me a card for ever surgery I had and gave it to me before we went into surgery.
That really is awful. The whole cancer team need to be respectful of EVERYONE and how they feel and not just if you are Stage IV right off the bat. Even if it is caught "early" where you have a chance to live a few more years before it bites you again your feelings matter. You are scared. You matter.
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Jaycee---I think we are soul sisters. Just the other day I read an article about our local cancer clinic. It mentioned each patient is assigned a nurse navigator and there is support from nutrition, social service, pastoral care, etc. I thought "What". I have never seen any of those support staff. -----I wonder if we even have them or if it was just hype to promote our center to the public----- But then I wonder if I was not told of them due to being metastatic. Maybe those are for the early stagers going thru chemo and radiation. And we definitely don't have an in person support group in our area---I checked about that. BCO is my support. You all are wonderful.
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candy-678, an “early stager” here. My group supposedly had nurse navigators and all that support personnel you mentioned. I received 1 call from the nurse navigator right after diagnosis. She made 1 appointment for me for the one date/time I told her I wasn’t available. I may have questioned her abilities if that task was too difficult. And, never heard from her again. BCO is/was my support. No idea if there is anything local??
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I received an email from the woman I talked to at Compassion and Choices. I'm pretty angry. She wrote a "bio" for me from what I sent her (a very short piece as an intro) and what we talked about in the long phone conversation. I guess they are not happy with me dragging my feet and not getting a move on. The bio she wrote is awful. Very poorly written with tons of inaccuracies, not to mention grammatical and spelling errors. Not me at all. I answered her that she should not use my name on that (piece of $hit) and can she please wait for me to have time to edit the piece I told her I already have written. I did mention, nicely, that I assumed people working for that organisation would understand that people with stage IV cancer have time and psychological constraints that prevent immediate compliance with requests from them. Was that going too far? I want to work with them but I've been pretty busy having CANCER. Maybe I don't have the time or patience for this activity. I need to decide. I'm really bad at deciding.
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Jaycee49:
I have followed your postings for quite a while finding them quite informative and full of kindness towards others. I think your indecision is not uncommon to many of us with BC. We can probably all identify with the thought of having to make one more decision to satisfy the needs of others, rather than our needs, is just one demand and one decision too many. I find that I am more indecisive when pressured because I feel like my control is being subsumed. It is also about personal value. If we cannot attach a meaningful value to the demand, do we really need to meet it? For someone to assume that their "bio" describes you based on a short piece you submitted as well as a telephone conversation is not only ignorant but rude. I do not feel what you expressed as your reaction is "too far" nor were your actions unwarranted.
I had breast cancer but that neither defines me nor does it give others the right to treat me as "the disease and its sequelae" rather than as a person struggling with this disease. I struggle every day with some residual issue related to my diagnosis and my treatment.
Your stating that you are being busy having CANCER is valid and well stated as to your position at this time. You aren't bad at deciding, rather you are not ready to relinquish that right to decision making to someone who just wants to fulfill an assignment at your expense. You were far kinder in your response than I think I would have been. What is said about you in this "bio" should reflect who you are and how you want others to perceive you, not to fulfill their assignment. I find that sometimes what others write about us deprives us of being 3 dimensional and we are presented as being "flat". You have a right to be 3-D and not presented as "flat" Jaycee. That would be an unfair representation of who you are, so you go girl and speak your mind. Betrayal
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I was prescribed spironolactone for hypertension and not told it was a potassium-sparing diuretic that was a female hormone that mimicked estrogen. I have had breast cancer twice. Both times, my cancer cells fed on estrogen. Letrizole was on my list of medications..
Breast cancer is no longer listed as a side effect of calcium channel blockers. The black box warning has been removed from spironolactone and my pharmacist told me CVS has no record of it ever having a Black Box warning.
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Betrayal, thank you very much for your words. I got another email from the person at CC right away saying not to worry and to take my time. I am going to keep my options open for now. I want to work on what I wrote anyway. Maybe I needed a nudge to get going.
And for you, Betrayal and everyone else here, my sister was diagnosed with stage 0 BC when she was 57. Stage 0. She's 72 now. I love and respect her more than anyone else in the world. To this day, she is worried about recurrence. In the first few years, she would be close to frantic while dealing with taking her mammogram films to the facility where they would be read. (Weird, I know but it was a long time ago and there was some kind of insurance issue I never understood.) My sister is really smart and totally stable in all other regards but cancer still sends her mind spinning. Stage 0. My former MO told me she really didn't have cancer. (Thus former.) She had two surgeries and radiation. She refused Tamoxifen or an AI. Yes, they were recommended. (I told you she was smart.) Cancer is cancer. Don't let anyone tell you that you are overreacting.
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Geez....I'd trade my de novo Stage 4 (w.tumors to brain, spine, bones, bone marrow, and organs) for her Stage 0 any day of the week. As a matter of fact, I'd be doing cartwheels in the street.
My days are winding down. I can barely walk, can't climb steps anymore, can't see, and hurt all over. The lymphedema ain't fun either. Yes, cancer is cancer, but some of us have to deal w.a bigger pile of turds than others.
L
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I must admit, I have that knee-jerk reaction to people with dx like Betrayal's. I think, "what is she complaining about?" Then I stop myself. I can't diminish their situation. I just can't. Even if you only have one tiny little turd on your lawn, you could still step in it and get poop all over your shoe. And that's really hard to get off.
I feel for you, Lita, I really do. I would never be able to tolerate the things you do. Amazing. I hope you can figure out your next step. So difficult.
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Lita you are right, I frequently think that there are other women in worse conditions than me. I see a lot of people worse than me at the hospital. But the fear, the sadness, the uncertain future... I' m so coward, I really don't know how do you deal with those all sh#@%t. Sometimes life seems to be so unfair. I wrote it thinking to you and I feel shame on me
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Wow, Jaycee 49. Was not expecting to feel that my BC experience would be invalidated because I am not a "certain stage". My BC experience has been Murphy's Law of what could go wrong, did and my turd has not been so small. I did not give you all the dope on my experiences because I didn't feel comfortable revealing all at once. The stats beneath my postings do not reflect this since you have to choose from a drop down list. Women with my stage have no guarantee that they will survive this disease because of their stage at the time of dx. All I know now is that I have not been in those percentiles where I have a greater chance of survival. For example, how many women require a second lumpectomy ~ 20% and I got to be the lucky one with very slim margins which required more radiation sessions with additional boosts. The damage is permanent.
I came here thinking I would find comfort. NOT. And not sure about what you meant when you said I should not let others tell me I am overreacting.
Lita, I do not know how you do what you do and still find the time to be willing to share your experience. I admire you and your spirit.
Have a good day.
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Betrayal, you totally misunderstood what I was trying, and obviously not succeeding, to say. I do not mean to invalidate your situation. I was actually trying to validate it by saying that something that may LOOK small can really turn out to be large and difficult. Time to tone down my symbolism. I apologize.
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Betrayal everyone can vent here. Staging does not affect how cancer affects you mentally or the mutilation of your body or stupid medical people. Complain away.
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What gets me is when drs minimize cancers. If it's not St 1 or higher, they don't really think it's that big a deal - - but YES...ANY CANCER, no matter the stage, IS a big deal. It disrupts your life...as in lumpectomies, chemo, radiation blasts, and never-ending appointments. You may not have to have as much chemo and rads as a St 3+ person, but it still changes your perspective forever. And if you're not St 4 already, there's always the fear of it coming back in a much more aggressive form.
Even a relatively mild cold virus can take a turn for the worst and become pneumonia - - - and you could die from that.
A cut or scrape can become infected and go septic - - - and you could die from that.
When it comes to medical issues NOTHING should ever be downplayed or underestimated.
But nevertheless, if I had a choice, I'd still rather be St 0 than St 4.
L
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After lurking for 3 years I felt this was a "safe" place to be able to express my anger over experiences I have had during this BC experience. I was looking for support that I have not been able to find in support groups, from the nurse navigators nor even from my physicians' who also play the comparison card with the "you are so lucky that you don't have ... "(you can fill in the blank with whatever you feel is appropriate). The bottom line is if I was really lucky, I would not have had BC!
What I have learned by watching is that none of us have had it easy since dx, none of us could predict what we would feel, what our individual experience would be, how we would respond or when we "will be over it". Runor wrote a very telling description of the difference between sadness and depression that struck a chord. While others want to label me with depression (which I am not), I am functional and feel that the sadness she described is what I experience on some days and it can be utterly paralyzing. Most days I am able to control it but there are some triggers (and they vary) that let it out again. I have gotten really good at hiding it though. It wakes me in the middle of the night and makes sleep a challenge.
So for the sake of peaceful coexistence, Jaycee49, I accept your apology. Neither of us can walk in each other's shoes but we each have our lived experience; you have yours and I have mine. I will leave it at that.
bcincolorado, thank you for your kind response. This is touted as Steamroom for Anger: a forum for emotional crises, so thanks for telling me I can complain away.
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Candy, I have a nurse Navigator and will have her until my 1 yr anniversary. After that I will get a different nurse Navigator for as long as I choose to have her up to 5 yrs. So yes there is one for the newly diagnosed but there should be a follow up nurse Navigator in your area. You could call your local hospital to see if there is a nurse Navigator assigned there. If there is she should know about a support group available. We have one and it's open to the newly diagnosed to longer term survivors. My local group has quite a few women who are long timers, some who have a reoccurrence a couple whi are dealing with mets, as well as the newly diagnosed looking for direction and hope but this is a closed group and not publically advertised.
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I agree Lita,ONCOLOGISTS are just focused on CHEMO and the money the get from CHEMO,they don't care,they have no time to explain the treatments and the side effects of CHEMO,even pain and low platelets.The LAB fax the blood test results to ONCOLOGISTS a day after and doctors of office don't even bother to call and ask if patients are okey,if they are bleeding or not,they do not give precautions or advise to avoid medications if needed.It angers me because they do not call me and I receive the results 4 days after doctors receive them.
Just poring out my anger.
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Yself...so sorry you were prescribed a drug that was contraindicated due to your history of BC. IMO it wouldn't be listed as a side effect. However, a good doc will look at your medical history and also the other drugs you are in. Your doc had no business prescribing spironalactone and I would find a new doctor!
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JanetMara, I'm sorry you have an MO who doesn't get it. Mine is great. We met yesterday and he's actually being very cautious with my being on Kadcyla for residual tumors. He is pushing for me to change to Herceptin and Perjeta because I think he's more comfortable with that. I'm his 1st patient with BC on Kadcyla. I'm fighting to stay on it as I was getting round 2 yesterday. I'd rather him be overly cautious about this than comfortable with H/P. We did reach an agreement that if my neuropathy from Taxol & Herceptin gets worse or not better then I'll switch over. As he said only 20% of patients get neuropathy on Kadcyla...I told him I'm not on that 20%!
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Betrayal, I hear you and agree, stage 1 can be horrible. I also hear others like Lita57, for whom I have to agree, stage 0 would be way better than stage 4.
I was first diagnosed with stage 1 IDC. When I say "I hear you" on what could go wrong did, here is a short list of what happened to me in 2003.
* I was scheduled for surgery day two of my period, the heaviest day for me.
*They put me in a too small wheel chair and wheeled me to the other end of the hospital for my needle localizartion and injection/scan for sentinel node biopsy. I was too scared and embarrassed to say anything and ended up with huge welts on both thighs.
* While waiting for the scan the nurses disagreed on how my gowns were on (one open in front, one open in back), they removed both, left me standing stark naked for a few minutes and another patient, a man, was ushered right past me!
*My sentinel node biopsy failed and I had the whole fat pad removed with 24 nodes all neg.
*My skin on my breast turned bright red and stayed that way for years.
* I developed lymphedema in my arm immediately after surgery
*I got extremely ill from chemo, only the last round was I able to get through it without a lot of discomfort or nausea
*I was burned so bad by radiation that I had jelly bean size blisters on the top of my breast and the bottom skin literally sloughed off.The RO looked at me and said "I knew that was going to happen!" How dare she not tell me! They refused me any cream or lotion. My MO was furious and wrote a script for Sivadine.
*They ignored the orange Allergy Alert wrist band that I had an allergy to adhesive when I had my port put in and a re-excision for clean margins. I had to remove the bandage over the port the next morning, it was covered in tiny blisters. That prevented me from having a MUGA scan before my chemo.
*I was supposed to be put to sleep for the re-excision and port surgery, they covered my head with a sheet, no one ever checked to see if I was awake and I was awake through most of the surgery. I felt pain although not the full extent, I couldn't move, I tried holding my breath so someone would notice, no one did. More than half way through the operation the anesthesiologist realized I was not out and gave me more anesthesia. I was so traumatized I couldn't tell anyone. I woke up at home screaming in the middle of the night after a nightmare that I had been declared dead but wasn't and was being put in one of those refrigeration drawers you see in the movies and I was helpless, just as I was during the surgery, to get anyone's attention. After confessing to my husband, I wrote a letter to my surgeon. I told her all the conversation that was going on while I "wasn't" under. She called and we talked. I had the port removed under local anesthesia because of that.
There is more, but I will spare you.
Yes, even stage 1 can be horrific.
Little did I know, after four doctors swore I would never get cancer again, 15 1/2 years later I came down with ILC. In between, my mother, oldest sister got invasive breast cancer. My sister had both bc and lymphoma at the same time! She passed away of MSD caused by the treatments from the other two. A few weeks ago my other sister was diagnosed with breast cancer. She has surgery this week.
Breast cancer is an emotional roller coaster ride for everyone diagnosed.
Rant and vent, we all need this thread, we all support each other. Two things are true, my breast cancer could always be worse, and somebody has it worse! Too many "somebodies!"
I love you ladies, all of you! (((((CYBER HUGS))))
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