STEAM ROOM FOR ANGER
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Thank you for replying so quickly Meow. As I was reading your reply the tears started to flow as I realize that I am not alone in this, I mean I know that this problem is not uncommon but nobody talks about it so you feel like you're the only one. Like you I am made to feel inferior and not a real member of the family. When I first came into this family I was a very confident and joyous person, and somehow that has been eroding. This is so not me. And I get what you mean about reunions. I now dread every family function after years of trying so hard to make it work. The last few gatherings have been particularly hurtful and I have lost hope of ever having meaningful relationships with these people. My counselor has actually advised against spending time with my husband's family and instead going to my family at those times. She said in time it would become a part of the expected norm, she said it doesn't always have to be that way forever but that maybe when I feel ready to attend again that I would get more respect. She also said that it would be difficult at first, but she said to think of it as making the hard decisions now to protect your love for your husband, if not then you will start to resent him and yes even decide that the love is not enough. Those were hard words for me to swallow. I understand what she means but my husband is having a hard time with it, and it feels like I am letting his family win. The counselor said not at all, she said you are choosing you for a change. I will be speaking with her again this week about this latest blowup. Meow I will be here for you and thank you for being here for me ((hugs))!
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Donna and Meow, I have been in the situation that you both are now. My only advise is to get out now! Do not engage with these people in any way! People like them do things to get a reaction out of us and upset us. If you do not react to this or engage with them, they lose. Let your husband deal with them. Once I let my husband deal with things, he quickly realized what evil people they are, and has withdrawn from them. Our life is SO peaceful now, with no drama! It took me a long time to realize that these people are never going to change...all I could do was change the way that I react to them. Best lesson I ever learned
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Here's my rant, sorry in advance...
I am TOO YOUNG FOR THIS. I did my breast self exams like a good girl and found the lump at Stage 1A but everything I read says the under 35 group has a MUCH worse prognosis than 40+. I don't understand why- my tumor isn't particularly aggressive and I was node negative, but nope you're young so you get chemo! And according to one MO at MD Anderson my age means I should get the super duper aggressive chemo! My PCP, when she originally called me with my diagnosis, told me- "Bad news, it's cancer. Good news, it's very small on imaging and grade 1 so you won't need chemo! Just radiation! This will only be a bump in the road!" Not so much apparently. I just heard about a big study they did on DCIS, and apparently the type of treatment the patients received had no affect on survival whatsoever. Especially with the under 35 group, which had a 17x increased risk of dying from cancer after 20 years, even after only having DCIS! This goes along with the school of thought I've heard about that says it doesn't matter how early you catch the tumor, if it's going to kill you it will kill you regardless. Especially if you're young. It really makes me question putting myself through all of this if it don't matter.
I'm getting married in March and I feel so badly for my fiance who has had to go through all of this with me. The stress of the injections and surgery and the embarassment of having to leave his "sample" in a cup while we were trying to preserve embryos. The fact that I may not live to see any kids we get out of that grow up. Worrying about passing along whatever made me get this now. Him having to deal with all of my stress and crying and anxiety. He has been wonderful and supportive and says he just wishes he could go through this instead of me. So I know I am fortunate in that regard. I just wish I wasn't doing this to him, or my family. I've caused everyone a lot of pain. One oncologist said there is probably something inherently wrong with young women who get BC, something genetic they don't know about yet, or something wrong with my immune system. The MD Anderson oncologist said "some patients are like fighter pilots, willing to do ANYTHING to take down the cancer. I guess you're not a fighter pilot." That really hurt my feelings honestly, like he was calling me a coward for not wanting DD AC+T for what he said would be a less than 1% benefit. I agreed to do the TC for a 3-5% benefit, but apparently that wasn't enough for him.
My oncologist put me in a support group for young survivors/fighters, but everyone there is high grade, triple neg, or HER2+ and needed a mastectomy or super duper chemo. So I feel like a jerk for complaining that this is happening to me. Which makes me feel even worse about this whole thing. I have yet to meet a SINGLE person under 40 who has a similar diagnosis to mine. I don't think I'll be going back there.
I feel like my life was about to really start, the 30s are supposed to be the best decade of your life. Now all of that is ruined and I am so angry at myself or God or Fate or what have you. I picked up my wedding dress and I'm supposed to start getting fittings now but I can't because I have no idea what I will look like in 6 months thanks to treatment. I know I'll have a big purple scar from the port I'm getting in on Tuesday that the dress doesn't hide. Some days taking it "one day at a time" just doesn't help.Thanks for listening.
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thank you for your kind words Grey. I'm sure you are lovely inside and out as well. Hugs to you.
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Wow Tiffany you are so beautiful! Please don't let BC rain on your wedding day. I know where you are coming from in terms of the anger. Before I had BC and 2 mastectomies I had life problems but I sure dealt with them alot better, now everything seems worse. I too can get pretty angry with myself and God and many others. The anger hurts and doesn't seem to make anything better, but it's there and right now I have to try and deal with it. Someone once said to me it is probably because I am grieving who I used to be, and who I was in the process of becoming. Probably true. I was definitely a work in progress but happy with where life was taking me, then WHAM right in the middle of everything I get a BC diagnosis. I was just starting to come to terms with the new me and then WHAM again, BC diagnosis #2. I can tell from your post that your husband-to-be is a wonderful man, and ready to do this with you. Please don't let yourself believe that your life is ruined. And to h*ll with those insensitive doctors. Honestly. Do they really hear themselves?? Makes me mad.
Hugs for ((you))!
Donna
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Thanks Lynnwood for your reply to my earlier rant. You obviously understand when you said that these people do things to get a reaction out of us and upset us. That's exactly the game and I'm tired of playing. I definitely do not need any more drama in my life right now. It's tiring! Think I need a nap before I start the weekend lol!!!
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Tshire, you looks beautiful in your dress.
We need to focus on the future and stay positive.
Although i must say it is easier to say and done. I am 39 years old, diagnosed also with stage 1a breast cancer, 1.1 cm tumor, no node, but Her2+. I had mastectomy middle of June, and going through 6 cycles of TCH. I will be doing my 3rd one next Thursday.
I did not feel any lump in my breast until one day when my husband accidentally hit me with his elbow unconsciously in the middle of the night. This never happened in the last 20 years that I have been with him. He is such a wonderful husband. Guess what, the spot where his elbow hit me is where the tumor was located. I had physical exam just a month prior, and doctor did not feel anything. I was not eligible for mammogram because I am under 40. The spot turned a little bruise, which I thought it was normal. It did not go away for a month, so he insisted for me to have it checked, make sure it was not anything serious. Doctor felt it this time and ordered mammogram along with ultra sound. I saw a mass on the ultrasound and they did biopsy on the spot. I was anxious to hear about the result for the next few days. Monday morning I got a call "I am sorry you had Cancer".
That word itself is like a death ultimatum for me. When I heard "you have cancer", my world stopped. I started to think if I will live long enough to see my kids grow up. I wasn't worried about the surgery as I was with Chemo. I am petrified with the word Chemo. I imagined the worst. So far, I've been through 2 cycles and technically, I should not feel worried anymore because I have gone through it twice. But, that is not the case for me. I am anxious every time the date is approaching.
Due to this chemo drugs, there are days that I feel down and moody. Trying to be positive is very difficult things to do regardless of the fact that I should feel grateful that it is caught early and I have family that are supportive to me.
We did not choose to have cancer, but we got it. There is not much thing we can do except to deal with it.
Hugs to all of you ladies
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Tiffany, I can understand your anguish and anger, I liken the emotional roller coaster to going through the stages of grief, to hopefully reach a form of acceptance that we are having to go through something that feels totally unacceptable and unfair.
My husband proposed to me on the eve of my mastectomy and reconstruction, which made it the best and worst night of my life. He made me understand that he didn't care what I was going to look like after or how long this nightmare was going to take, he was going to go through it with me. Your fiancé sounds like he is cut from the same cloth. It can make the two of you closer and stronger than ever.
Fear darkens everything, fear of the now and fear of the unknown. It sounds like you have the basis of a wonderful support system and we are also hear to listen and to help where we can. There is a wealth of experience and knowledge here.
My heart goes out to you
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Good rant, tshire. You are too young for this. It is all kinds of unfair. You have every right to complain. It's horrible that even the doctor and the support group are not helping. What I am about to say is in no way meant to minimize what you are going through or to stop you from railing against this stupid bc. I do want to point out that those dire statistics are not about you and they are not about now. Yes, we use them to help guide treatment decisions for evidence-based medicine, but really your personal future is unknown. Unknown is not the same as dire. You will do what you need to do and you will get on with your life. It will be different from what you thought, unfairly so. But it can still be good. And new and better treatments will be available in the future if you should need them. Which you may not.
Do consider making some appointments with the seamstress now for dates closer to the wedding, and then have her work some magic with a way to alter or add to the dress to cover the scar if you wish to cover it. Your dress is gorgeous and the love on your face for that awesome man you are marrying will be the perfect beautiful accessory.
I think that staying positive is sometimes actually more stressful when it means hiding or denying your real feelings. Something really helpful that my therapist explained is that we grieve the loss of what we had thought our life would be like. But grief is temporary. People get through it and feel better. I have found this to be true.
Alice, as you know, feeling anxious and down are perfectly normal and not a shortcoming. Hugs to you, and I hope you can find some nice moments for yourself like being outside, cuddling a pet, watching a funny movie--whatever gives you a break.
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Thanks for everyone's kindness. It means a lot to me.
I just wish I understood why being young automatically means bad prognosis. Usually a grade 1 ER/PR+++ HER2- Stage 1A node negative would be a good prognosis, but suddenly it's bad because I am young? How does being young make the cancer act differently? Everything I find when researching this question says it's because young women find it at an advanced stage because they don't get screened, or because young women tend to have genetic mutations or aggressive tumors. I have none of those. So why am I automatically worse off? It's so frustrating and distressing to not get a straight answer about this.
Oh and I forgot to mention, the MD Anderson MO told me casually (while blowing his nose) that he didn't recommend me getting pregnant EVER, not even in 5 years of treatment, and freezing embryos was probably a waste of time. Broke my heart.
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Hi TShire,
Nice rant - and totally understandable understandable given the circumstances! I don't have anything to offer regarding studies and your diagnosis, but I hope I can set your mind at rest about the scarring. You won't need to alter your neckline or do anything to change that lovely wedding dress
I've used a product called Dermablend and it is amazing. It's like concealer on steriods! It's specifically made to cover up scars, birthmarks, etc. and sold in various department stores and online. What you want is the Professional Cover Creme and the setting powder. You put on the creme, which has a fairly tacky (as in sticky) texture, dust the setting powder over it, and it stays put for an amazing long time. You can find a store nearby and try on samples to find your perfect shade.
Stay tuned, I might have a Friday rant surfacing myself...
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Tiffany, suggest you chat with Suladog. She was first diagnosed around your age. Yes, she is back here, but 20 years later. She has very insightful perspectives. This all sucks. But advancements are being made. For myself, I can surmise certain things, but no real answers. By the numbers, I shouldn't have survived. WAVING
and wiggling---can't dance at the computer..................The bottom line is it's all unknown. Surround yourself with guides that look at the positives as to what to do. The word positive in our community is almost as bad as pink. Connotation is everything. We care about you and want the best.
This thread serves a true need to let the anger out. I needed it so many times. Didn't think to do a thread, until a friend had no place to vent her anger. Come here as often as needed. I throw my harms around you a bear hug sassy.
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OK, rant time!
Breast cancer, you SOB! You're not content with taking our peace of mind,sanity, hair, boobs, and everything else...you take one of my favorite words and make it your b*tch.
What word am I talking about? The word "journey".
Journeys? Journeys are meant for happy adventures. Travelers take journeys and come back with tales of marvelous wonders. Hobbits take journeys and end up saving kingdoms. Some get to ride on the backs of eagles! Lewis and Clark took a journey and found half a continent! Journey, the classic 80's rock band, made awesome music! There's an old crooner song called Sentimental Journey. The list of good stuff goes on...
The BC journey? eh, not liking it so much. Journey my *ss! So far, most of it has been more like Mr. Toad's Wild Ride and a Dukes of Hazzard car chase all rolled into one! Hang on tight, it's about to get bumpy!
Y'all have a good holiday weekend!
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even Suladog had an "aggressive" cancer back then as triple negative. More typical for young people. Still can't find anyone similar to me. Sigh
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Tiffiny, the story of tomorrow isn't written. I gave up the thought of having a kid at 28 b/c of problems. Turned up at 34 prego. Cool, he's 30 now. Another more poignant story from the early 1900's, is my grandparents on my moms side. He was 33 she was 28. Irish. The first born died at 3 months of pneumonia. The second born died at child birth b/c the midwife forgot to clamp the umbilical cord. Perfectly born child died because of a mistake. The couple were told by many that it was a sign from God that they shouldn't have children. They had eight more. Your story isn't written. It will unfold. Do what you need to make what you want i.e saving eggs and sperm.
Your story, make it
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Thank you--somebody finally--wildflower for addressing the whole "journey" situation. I could not agree more. How about... Well I have a lot of words but "journey" isn't one of them.
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Tiffany-----------my pathology went from Grade 2(6) to grade 3(8) in less than a month from bx to BMX. I'm here 2009 dx till now------absolutely no reason why I'm here. I can surmise allot. Other things have happened. Bottom line-----I'll just go with it till the next something happens. Then I'll go with it till the next thing. So many here do. We learn after the first awful terrible hateful beginning.
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popping in here to say hey there to Sas, and Tiffany!
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Tshire,
I had several friends who were ER positive in their 20's... They were in my support group. One of them was as bad as you could imagine... 25 yrs old something like 19 out of 19 nodes positive. She had a strong chemo, met her future husband ( a doctor... Not an MO) while at the hospital bald as a Bullard ball ... Her not him. She's still out there now kicking it on the east coast where their families are. They have two kids (adopted) who are probably out of college right about now.. I know she's around and doing well cause even though I haven't seen her in ages, I google her every now and then just to check that she's still out there!
Actually I envied the ones in my group who were ER+ because they had something they could take after chemo to keep the cancer away... I had chemo and a handshake and a good luck to you!
Just adding this because of what was being said about freezing eggs etc... This was not an option back in my day. We're I you I'd definitely look into that. One could also use your eggs in a surrogate but most MOs might say that after a few years you might try a pregnancy. My MO at Cedars had all sorts of pictures on his wall of patients and the babies they had after treatment which was a very sweet and comforting thing.
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Ok so about r weekd ago i though i has cn an ear infection . Well now they r telling i Have no medicatal choverage at al, i have to may out of pockey.l.What r they talking about Wgo id kpsying for my cacncer stuff, have Medicare anc. Medicaid or i though so, not can figutre it out til tuesdaty, sgoryy 4 yelling meduicatio
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Blondie,, that's just nuts that they told you that. What the heck is going on? Did they type in the wrong numbers or something?
My rant: Over on another thread,, someone said that her surgeon told her that lumpectomies with radiation would be sufficient treatment and that having double MX's was "barbaric". What??? I am just furious at the use of that word. I am steaming.
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Some of you may know me from a few years back. Still dealing with issues of scar tissue. Why the F k, can't they come up with an idea to kill the thing that makes scar tissue. Have so many surgeries, last one 3 weeks ago, dealing with cording and lumps and bumps and soreness. and the people say You are Cancer Free, yes, but I hurt like hell, After injections, physical therapists, shrinks, drugs, I am one mess. Thank G-d I still have all my bras from day 1, depending on how I feel. I was never tatooed b/c it was never mentioned, had the Mast in 2009 and last year on 9-10 had an LFlap to prevent the scarring from pounding in me. My pain management guy cannot even help any more. Then in Dec. the pocket opened and the boob went flying to my side so more surgery to close the pocket with boob in it. My arm sticks to my side. yes, I am thankful for the boobs, different sizes due to a few capsular contractrues, can deal with that also. But every minute of every day I am reminded of this mess b/c of scar tissue. My PS is a terrific dr as well but who knew I would be dealing with this scar tissue. Where is Dr. House and staff????
Love to all, so to sum it up I don't want to hear the glamorization of new boob with bc. BS to that.
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Tshire, you need a new oncologist. Seriously. Your choices of treatment are perfectly reasonable. And even if they weren't he has no right to belittle you for them. His (I assume it's a he) job is to help you achieve whatever you want to achieve. If you want to have children, have them. So long as you understand the pros and cons (and from your rant it seems to me that you do), your body, your choice.
You look beautiful in your dress -- you'll look beautiful in March and don't ever forget it.
(OK -- rant at your MO over now)
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I have stage 4 breast cancer with bone Mets and possible lung and liver mets as well. My rant? I am tired of my medical oncologist! He has given me the same report two times in a row, has told me it looks bad beforeenough time has passed. He doesn't recall what drug I am presently on, even though he is the one that put me on it. So I went for a second opinion. I was hoping that I could begin being his patient. Instead, I was told that my present dr. Was excellent ! Did I tell you that they have never Met? I want a new oncologist that cares about me. Is that so terrible? I want someone who looks at my chart before walking in and knows my name. I am not a number
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Ngd54, I hate to say it but they all support each other. The patient should be the concern not the worry of stepping on someone else's toes. Especially a stage 4 patient, the doctor may be excellent but so what if they aren't helping you. I feel like dentists are the same way.
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thanks for listening. I just don't know where to start to find someone who really cares
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RANT.... DH is driving me insane. I feel mean because he wasn't expecting me to become ill and he has now become my carer and he has done his best. He is an angry, volatile man by nature and he finds this role difficult. His retirement coincided with my dx so the lovely life he was planning for himself didn't happen. He is a hypocondriac and has always worried about his health, yet still managed to do whatever he wanted to do. Anyhoo, since my dx he has been constantly unwell. He has a path beaten to the doctors with his various ailments and he has been genuinely suffering - nausea, vomiting, ear infections, vertigo, back pains, probs with his knees, fear of heart attacks, etc etc. He's had lots of tests and scans but there's no sign of anything wrong. Yet not a day goes by without a list of complaints. Every time he gets a scratch it's like emergency ward ten here, screams for disinfectant, bandages, worries about infection, getting cellulitis, does he need antibiotics. I listen to a constant barrage of his symptoms and I feel like shouting (and do).. 'Shut the f### up! Maybe if you didn't eat so much and drink wine every night, you might feel better. Take better care of yourself, YOur knees can be sorted. It's not a competition. You're not going to die!' If I am fatigued, he is. If I don't sleep well, neither does he. You get the picture. I feel callous, but I cannot feel sorry for him. I want to kill him.... Aargh!
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I am so disappointed...got my aereolla tatoo two weeks ago, and it has all peeled off, plus my nipple reconstruction failed on that breast as well. Now they are telling me I have to wait three more months to even try it again-to give the radiated breast more time to heal. I havent had rads in a year, will it ever "heal"? Arggghhhhhh... I just wanted to be done. I left that PS's office so discouraged and disappointed this week, blah!
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sorry, you have to go through this. Hopefully things work out next time. Hugs
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I'm furious that two of the top ten worst charities are cancer related and a breast cancer charity was number 2. http://weekendcollective.com/10-best-10-worst-charities/
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