STEAM ROOM FOR ANGER

edwards750

DancingElizabeth - that is really cruel. I stopped talking about it at least to people who couldn’t relate - that would be anyone who didn’t have it or hadn’t had it. It is a disease that you really have to experience to understand but it doesn’t excuse the insensitivity of some people like your sister.

Maybe she just doesn’t comprehend just how scared you are. We all know that feeling. No matter what kind of BC you/we have there are no guarantees so we are bound to this emotional roller coaster forever. I try not to dwell on the fear of a recurrence and despite being 7 years out come my annual mammogram in May I’ll go into anxiety mode.

We are here for you even your sister isn’t. Btw my sister and SIL both have BC. SIL is 10 years out and my sister was 4 years out when she had a local recurrence.

Diane

edwards750

DancingElizabeth - that is really cruel. I stopped talking about it at least to people who couldn't relate - that would be anyone who didn't have it or hadn't had it. It is a disease that you really have to experience to understand but it doesn't excuse the insensitivity of some people like your sister.

Maybe she just doesn't comprehend just how scared you are. We all know that feeling. No matter what kind of BC you/we have there are no guarantees so we are bound to this emotional roller coaster forever. I try not to dwell on the fear of a recurrence and despite being 7 years out come my annual mammogram in May I'll go into anxiety mode.

We are here for you even your sister isn't. Btw my sister and SIL both have BC. SIL is 10 years out and my sister was 4 years out when she had a local recurrence.

Diane

mara51506

Dancing Elizabeth, I am sorry to hear about your fight with your sister. It is really difficult when people who did not go through cancer try to tell us how to feel after the fact. Of course you are feeling fearful of recurrence. This is what I call the sword of Damocles hanging over our heads. Treatment and surgery and radiation can leave us all with a good case of PTSD among other things. The best thing you can do for yourself is to stop trying to make your sister understand. Some people just cannot understand and never will. Talk to others who understand your fears, whether here or if you have a social worker or other family. Stay in contact with her if you can but don't talk about the cancer if you get along otherwise. If she keeps on you about how to react, ask her to knock it off. Sometimes people just cannot understand and in her own way she might be trying to help, but it just hurts instead. Change the people you interact with regarding cancer. Speak here where we can understand how you feel, a social worker or support group. If you can have a relationship with her outside of the cancer, this would be ideal but if she cannot stop bringing up how you should be and if it causes undue stress, you have to decide if you need some distance.

I had a similar issue with a younger brother and his wife. They told my older brother they do not believe I am sick and am gaming the system since I live on disability. They have no empathy and don't care if I live or die. He also resents me because he thinks I caused my mother to go into debt before she died. I realized that he and his wife would be happy for me to be out of their lives and I cannot deal with the stress. The last time I texted them, I told them they would not hear from me again. They said whatever. That told me everything I needed to know. I have not had contact with him or his horrible wife. I am moving and they will NOT know where I am living. When the time comes for me to die (I am terminal), he will not be informed of anything until AFTER I die. He has emotionally and verbally abused me from childhood and I will not allow that to happen on my deathbed. He will be glad when I am dead.

I hope you never have to make the same decision about your sister, it would be sad. Hopefully, avoiding a topic that is a sore point to her and you will allow you to have a better relationship about other things. Just make sure to get a good support network around you. Good luck. I wish you and your sister the best.

Artista964

i think the text wording from your sis is insensitive. Maybe that's her way of saying you need to live each day like it could be your last, which is what everyone should do. Any one of us can go tomorrow in an accident. I cut out people in my life who make my anxiety worse. Those people have no clue about any of my personal stuff. Best thing i did.

runor

DancingElizabeth, that was shitty what your sister said to you. I know that it begins to feel like support was a temporary thing and if you need it longer than someone wanted to give it, well you're just being a pain in the ass. Like getting over this was supposed to happen on someone else's schedule and if it doesn't, well boo for you. I admit to keeping things more and more to myself for the very reason that you described, a feeling that I like to call Alone and Scared As Hell.

I feel a deep sorrow. So deep. So sad. It's true what they say, ignorance is bliss. I could have lived the rest of my life not knowing I was going to die. We all know it, but none of us KNOW it, until we know it, and then it messes us up. And who can you tell? Who can you share this with? Not that you expect anyone to cure you. You know that's not how this goes. But a safe space between friends where you can lay your burden on the table and say, oh my god, I get so tired carrying that around day after day. They can't lift it up for you, but they can make room for you to set it down for a few minutes. But few are the people who are strong enough to sit with you and witness your burden. If you find those people, the ones that are okay with the reality, keep them.

Many people ask me how I am and I know the majority of them don't really want to know. It is a societal nicety and yes, it is nice. Then there are others who ask and what they are actually saying is, I know you're not okay, but I'm glad you're here because I love you and don't want you to die and I know that fear is a constant companion. Strange how the same question coming from different people can carry such different weight.

DancingElizabeth, what your sister said was about her. It was not about you at all. There was no room for you in any of it. She is not strong enough to just allow you to be how you need to be and feel how you need to feel and say what you need to say. It takes great strength to witness the hard things in other people's lives. I remind myself to allow suffering in others, and to sit with it and not sweep it away when it needs to be seen. I am sorry this happened to you. At least here, we all get it. Boy, do we get it!

Snickersmom

rumor-you are the best writer of our feelings! You have the ability to put into words exactly how I feel. I wish I could do that but I can’t.I have printed off some of your posts like this one because your words have helped me so much. You don’t even know me but you have reached out and touched me more than you will ever know. So thank you.

Jenkins00

Thank you all for your support! I appreciate it very much! My Director called me from home yesterday. Yes, he stayed home because of me which I did thank him for. He does have bronchitis and picked up medication. Even though he didn't come right out an apologize he did realize his error and lapse in judgement. He was very sincere so I am going to let it go THIS time. He doesn't micromanage and hasn't been a dick about my work schedule for the past 6 months.

Wildplaces - You hit it right on the nail! I had a talk with my husband and another coworker/friend yesterday. We all came to the same agreement too.

DancingElizabeth

Thank-You Everyone!! Your kind words have brought me more comfort than I could ever express...

I am SO thankful for this thread. Its the only real place I have to go - where I feel understood...

Rumor - What you said is so true, that fear is a constant companion and just this morning I was crying, because I wish that I could just have one day (in a imaginary universe) where I never had breast cancer and I was completely healthy. It would be so great to just have that be my reality - for just one day. Or for any us - to have that.

I echo what Snickersmom said - I too - have printed out some of your posts. Because - you put into WORDS what my mind is not able to do. And, that gives me a sense of relief.

Mara - I am so sorry for how your younger brother and his awful wife have treated you. There are no words. I can’t wrap my brain around how cruel people can be. Especially people who are intermediate family members, is just unreal. My sister, growing up, always put me down and made me feel sort of unwanted. I thought that we were past that as adults and I thought that we had a good relationship, and it makes me feel really unloved by her that she could say the things that she says to me... I am glad you moving away from them!!

Rosabella - Yes, I agree what she said was completely insensitive!! I think that this is just the way she’s always going to be in no matter how much I hope that she would not be this way..

jaycee49

Jenkins, good compromise for now. The other people in your office should be thanking you for not having his germs still circulating. It is so important to feel comfortable at work. I worked my whole life and you spend so much time there. No reason to start unnecessary battles.

Wildplaces, I missed your post but went back to find it. Believe me, I have never been called "wise and kind" before. Thank you.

leftduetostupidmods

DancingElizabeth, I'd sign up for just one hour of it. An hour of the real thing, not false sense of security brought by intensive meditation and logical thinking. An hour of real, no-pain health, not the "aaah finally the pain-killer started working I can walk now".

And we still keep going....

Artista964

I honestly don't know how you stage 4 folks do it. I don't fret over what may happen. I'm only stage 3. Not sure I'd still have a strong mind if I progress. I'm hoping my thinking at it is what it is would still hold.

jaycee49

Rosabella, it's not that different. Plus, I'm not sitting around worrying about mets. I already have them. And, I wonder sometimes about the arbitrariness of the stages. I think they should not be discreet categories. It seems like more of a continuum to me. And I can just see a room full of guys (and I'm sure they were men), doctors, etc. deciding what characteristics make up each stage. Let's see. How many centimeters for stage IIB? How many positive nodes for stage IIIA? How far away is a "distant" metastasis? I mean, some of my mets are in my lungs. How far away is that from my boob? Not that far. Well, I guess with stage IV, you do this kind of thinking which I hope you don't end up doing. Cancer is really scary. Any kind, any stage, to anyone. It bothers me sometimes that the stage IV part of BCO says "stage IV ONLY." Why? Is it like that luxury car commercial that says, "look but don't touch?" Read but don't post. I assume it is ok to read. But post? That would surely wreak havoc. I better stop before I get in some kind of trouble.

Anyway, Rosabella, you and I have one reaction to our diagnosis and others (runor, etc.) have a different one. All are valid, understandable and supportable. I've said this before, but I think stage III is a really hard place to be. I commend you.

Lita57

Yeah...I agree St III is bad because it could go either way.

No, I'm not happy being St IV, but at least I don't have to wait for "the other shoe to drop." I know what I'm dealing with - there is no Stage V or Stage VI.

Of course, it's only downhill from here, ha ha . I always pray to the Lord to shield me from unnecessary worry and anxiety because that's not going to change anything. I also ask that He replace my despair with "a reluctant" sense of peaceful acceptance as there's nothing else I can do except continue to get my infusions until they stop working...essentially kicking the can a little further down the road.

My DD's friend just found out that her cancer has encapsulated her liver. Once you reach that point, we all know what happens next. If major ascites is involved, it's not gonna be fun. This young lady also has small children.

It TOTALLY SUCKS!!!

L

Snickersmom

Lita - I'm so sorry for your DD's friend, especially since she has small children. And you are right - cancer SUCKS bigtime no matter who it chooses and what stage it is.

Jaycee - I got a chuckle out of the visualization of the group of doctors, sitting around a big conference table, deciding what constitutes which stage, etc. But after I chuckled, I thought geesh, that's probably exactly what happened!!!

It's all damned scary. It's all cancer. It all sucks.

edwards750

I asked my friend what stage her BC was and she said her doctor didn’t believe in stages. What does that mean? I knew from the onset what Stage IV typically meant since there is no Stage V or VI. The thing is there are a lot of ladies who live long lives with Stage IV BC but the stigma attached to that stage invites all kinds of forgone conclusions.

I was DX with Stage 1b, Grade 1 IDC. I remember my first appointment with my BS’ associate and hearing her rattle off my stats asgood. Good? As compared to what? It’s still BC. Don’t get me wrong I’m relieved for now that I have reason to be optimistic according to the numbers.

There are no guarantees no matter what stage we are but we all know when it is an aggressive cancer the outlook can be more difficult to treat and manage.

I’m the poster person for worrying so in my case it wouldn’t matter what stage I was I would be in a constant state of anxiety. It gets worse when it’s time for my annual mammogram. I was 7 years out last August.

Good luck everyone!

Diane

bcincolorado

Everyone has heard someone say "you could be hit by a bus tomorrow" but my SIL aunt was actually hit by a car out jogging a few years ago and it killed her instantly. Sun in his eyes and he did not see her in the road running. Sad.

An old guy a church (92) had told people for years now when they ask how he is doing has just told them "you really do not want to know". Just say good morning and good to see you. Sometimes people just want honesty and kindness.

runor

Jaycee, what on earth do you mean that you have a different reaction than me? No one has a different reaction than me. Everyone thinks like me. That anyone might differ ... well this is news to me ! I don't know how to process this. Now I'm going to be off my food and god knows THAT'S never a good thing. THanks a lot Jaycee, you're such a big meanie!

Artista964

I guess we'll see if I go stage 4 if I can plow through it or if I'll say no txs. I'd be worried if I were stage 3 b or c as they are the highest risk. I guess it's good that I don't stress about it. I'm sure being alone helps.

jaycee49

runor, just making sure you are paying attention. I was trying to be all profound and you go there? No food?

I was going to add that our reactions fall on a continuum as well. More profoundness for you to scoff at.

mistyeyes

Cancer-the word itself brings up scary images, and after you had it the fear of reoccurrence is real. It is like a cloud that is always hanging over you, I keep telling myself that the sun does shine through the cloud and I can be happy where I am in life at this moment. .....That sounds really sappy, but some days sappy gets me through it.

runor

Jaycee, I sort of pay attention, when I'm not busy eating. ( gif of me spraying whipped cream straight from the can into my mouth). You know I think you're profound. In fact I count on it and worry when I don't see it.

nanette7fl

oh I'm so pissed! Again another Friday and DH is on his weekend and does he think of me and the fact that yesterday was chemo day??? NOOOOO Thanks to the steroid yesterday I finally made it to bed at 7am and was hoping to sleep until 10 when he had to head out for his dr appt and nooooo! my DD came in and woke me up to watch my 3 year granddaughter so DD could go to work. Did it ever cross his small feeble mind that maybe just maybe I'd like to sleep in a little like I have for the past 12 weeks??? Noooooo I guess it's just too much to ask that he THINK for once and do something so small,as to watch his grandbaby for 1 hour this morning.

Another thing bugging me for the past 2 hours he's like is there anything you want me to do?? Omg there's a million house things that are beneath him like emptying the dish washer... taking the kids outside to play on their swing set... vacuum the kitchen and bathroom floors... clean up HIS nasty sink... cook dinner.. go feed the chickens and ducks...put pine straw down in the hen house......No dear there's not a damned thing for you to help with (the list on the wall means nothing at all!) Maybe I wrote it in Chinese this morning....sigh

LoriCA

Ah the old "you could be hit by a bus tomorrow" line, one of my favorites. I tell those people that the difference with Stage IV is that we can see the bus barreling down on us (some days more than others, esp with organ mets) but our feet are firmly encased in cement and there's nothing we can do about it. Truthfully there are days when I'd rather be hit by a bus that I don't see coming, but at least seeing the bus does give us a chance to "get our affairs in order" for what that's worth and live as well as possible until that time. I am sorry about your aunt bcincolorado.

AliceBastable

Nanette7fl, maybe you could make a list of regular things for your husband to do on a day when you feel up to it. It might help him and reduce some of your frustration. I'm convinced, after many years of marriage and also having a grown son, that guys honestly don't notice the same things as women. Heck, there's things I need lists for or I forget, that my hubby remembers.

mara51506

I agree with the list making for people who would want to help but feel unsure what they should do first. I am one of those people. I tend to wait for someone to make a suggestion so I know what to do for someone. The around the house stuff I did, but when my mother was sick, she told me what she needed. She knew I would want to help but also knew I needed a bit of a road map. That was helpful. Now that I am on my own, I know things I need to get done for myself which is good.

bella2013

Today is my one year anniversary of my BMX/DIEP surgery. I wasn’t expecting to have any thoughts or emotions about it. I have been in tears all day. If someone talks to me about anything I burst into tears. I feel a very dark heavy depression...and I am on really good meds for depression. I don’t know what is going on.

I have not had that “breakdown moment since cancer invaded my life. Maybe this is finally my time. I am so grieved.

My best friend took me down to St. Augustine to shop the boutiques and we had a wonderful lunch on a tree covered patio sipping white sangria. It is 85 degrees here and beautiful sunshine. I would think it would brighten my day but it didn’t.

Anyone else have this experience on a cancer/surgery anniversary day?

Barbara

Micmel

absofreakinglutely!!! Every year. Every single year for sure. No matter what I fall in that memory hole and I look up and around bent over at the Sky wondering , “is this where the dirt comes?” Is this where my legs really won’t allow me to climb out and shake off the dirt. And scurry back to my tear stained pillow and burrow into my covers and cry in silence, this happens a lot. You’re grieving that feeling of purity, that innocence of not even giving our mortality another thought because we are young and beautiful , or middle aged and ran like the wind and had no fat to even speak of. I end up hating being in beauty nature’s beauty because it’s another reminder of what I won’t be seeing once the light goes out. The mountains I’ll never see or climb. It’s surreal to feel this way. I get it. My friend. I get it. You’re not alone..

Maire67

I was stage 3b for 11 years and stage 4 for 2 1/2 yrs. I try to live by “ that day may come but it’s not today” .So that you don’t think I’m completely nuts I have some pretty dark days. 4 months ago I thought I wasn’t going to be able to walk and it was cancer. It wasn’t . It was lots of other stuff and an epidural helped a lot plus prednisone for asthma..not lung mets.

Bella the emotions come at very different times. This is not a made for TV movie. I fell completely apart 11 years ago when I put my prostheses in the wrong side of the bra and tried to put it on. Really?? Anniversaries in life are sometimes a chance for your mind to try to absorb hard times. I was b***y ever hear in June for about 2 years for no reason until I realized it was th anniversary of my moms death. As for cancerversaries. I go to the beach for that day.

Nanette you sound like I always do after prednisone. I hate that feeling. I calm down and realize DH will NEVER change after 45 years. DHs are clueless. A list is ok for the grocery store but everything else is “ your telling me what to do” Years ago I figured out that if I wanted him to paint I had to start the cutting in and he would be guilted it to follow with the roller. Too tired to try that now. I wish you luck and I feel your frustration. I have no advice. Just sending hugs and good wishes. Love your sense of humor...” written in Chinese “. I’ll have to try that on him with a grocery list.

I’m sick and tired of being the one with cancer. But today was the best when DH told me about a friend who has cancer. However “ they look awful and you don’t “. I’ll try harder to look sick. No one truly understands except those of us who have it. I lost a friend from my support group this week. When I saw her a month ago she looked good. So angry at how this cancer makes me feel. My kidneys are going south now. Which treatment caused that or is it just old age? Tune in next week for my next visit to the MO.
Maire

DancingElizabeth

Barbara - Exactly. For me sometimes it's little things like seeing the “after visit summary" paper that I get from my MO’s office (after each visit). I might find it stuffed away somewhere in my purse, and just happen to notice the words “breast neoplasm" and it hits me all over again, that this has been my reality since April 13, 2016.

Furthermore, for me, it's the months leading up to the day, of the cancerversary that I feel a lot more anxiety and depression, and a feeling of dread as it gets closer and closer to April.

Just know, you are not alone alone...

Artista964

I guess I'm strange. My Cancerversary is June 2, my mom's birthday. Every June 2 since I celebrate my mom's birthday and being another year out. In 2020 I'll be 5 years out. With my profile I plan on continuing tamoxifen for however long I can. In 2020 my bs will see me once a year instead of twice and mo twice a year if not sooner, of course assuming all is still well. At 5 years the chances of recurrence goes down which is where this 5 year thing comes from for ER+ Her2- folks. The risk of mets doesn't really go up or down even though you can help try to lessen the chances with exercise (up to 50%) and diet which leads to hopefully some weight loss. So I guess I look at it the other way, like milestones being passed and still ok. I've had my share of problems: multiple hospitalizations for infection, collapsed lungs 1 week into rads, pneumonia, and more surgery. But I guess what keeps me up is that fam doesn't know, which is the biggest relief ever except bro, and I've done it all by myself. There were days I was like screw it. These txs suck bad. But I forced myself to not cancel appts. I'm glad docs are seeing me less now. I love all mine as they are very caring as well, but the waiting room then in the room waiting is misery esp when I feel fine. So I can't change my situation. I can't change how someone may view it like a friend. But luckily I've wrapped my head around it to where what anyone says, and there have been doozies like staff, I just laugh because they don't know. If I think they want to know I'll fill them in so they won't say it to someone else. The meds I'm on make me tired all the times. Makes for better sleep but I don't have energy for fretting over what ifs. I did for my dad when we thought he could have PLS ,a slower form of ALS but was relieved it's not and most likely a stroke. He's a year in. He has a PT that comes to his home for not only PT but to work on his thinking. Dad knows he's plateaued. His left side sucks but he can still do some things independently and most important to him is at 80 he can still work. He's an engineer and would go nuts at home retired. Yes stroke isn't the same as cancer but once you've had one, the chances for another one goes way up. Anyway, got off track as usual but that's how I get by. I had issues come up so it wasn't smooth sailing. I'm high risk esp with my bmi but in my mind, it is what it is.