Do you ever stop thinking about BC?
Hi everyone- with this new year, I am determined to get my life back. My DH says I've been out of sorts all year (started going through the diagnostic process last Jan). My question is, and I'm genuinely curious about this, when will I have just one day when I can get through the entire day without thinking about breast cancer? Has anyone reached that point, and if so, how long did it take you to get there? I don't necessarily think about it all the time, but it certainly stays in the back of my mind all the time. The side effects alone seem like a constant reminder. I would love to put it out of my mind for more than a few hours at a time. Is this normal?
Comments
-
there is a place called new normal. Don’t have a map to get there...but i promise you will find it. Some need help getting there, so don’t be afraid to ask for directions.... i found it pretty quickly. Had other medical issues that prepared me beforehand so my diagnosis and treatment and side effects were just a hiccup....
that said....not long ago, I was diagnosed with what turned out to be a benign tumor which before finding out was not malignant did a real number on my head. Here I was worried about a possible breast cancer recurrence in my future and here I was looking at another potential cancer...bottom line...you can worry about cancer or you can choose to live life instead. And, choose to let life unfold around you. Choose with all your might and propel yourself into living!
i wish you well0 -
Unfortunately I still only get hours..unless I'm at Disney...the happiest place on earth. Then at $400 a day...yep, not thinking about it! ( Or most any vacation). Then I come home and look at my bank account and then I realize I'm at the brokest place on earth! LOLOLOL!
It gets better though I keep a prescription of ambien and attivan on hand. You must reduce stress though. If you are like me ( customer service, bitchy people at work, husband's job is stressful) then you need to carve time for you elsewhere. For me it took a few yrs til I woke up and cut my inlaws off 90% ( best Christmas in 8 yrs) and a toxic aunt and cousin along with a coming to Jesus talk with a one sided best friend. You need to come first. Period. No fake drama. Our tolerance for bullshit evaporates as a side effect.
0 -
Someone here wrote about BC radio. In the beginning it blares every waking moment. As time goes on it still plays but it gets mixed in with the rest of your life. I've never had a day in almost eight years I haven't thought about BC. But it's not this huge monkey on my back. It does not rule my life. It is a reminder of the preciousness of life. Like voracious says - it's a new normal. I too have simplified relationships in my life. I rarely put myself in big social situations now. Life is too short to do things you don't want to do.
0 -
Well, there's thinking about it, and there's THINKING ABOUT IT. Yeah, I vaguely think about it when putting on a bra or needing to shift positions if I've slept on that side, or when popping the Tamoxifen, or needing to slather on moisturizer where I had radiation. But it's not much different than saying I think about my vision problems because I wear glasses and they're always on my face. It's just sort of there, but not in an interfering way. I only THINK ABOUT IT when I have MO or BS appointments.
0 -
Love the BC radio analogy. The air waves do get less "in your face".
0 -
Thank you ladies for your responses. I don't feel so strange to still be thinking about it now. I guess I'm still adjusting to the new normal and just need to turn down the radio a bit, even if I can't always change the station.
0 -
Whatjusthappened. I am totally with you. I was originally dx'd w/ Stage 1 IDC in 2017. Had a DMX and placed on Tamoxifen. Was told that I didn't need chemo or rads. Found a lump in the good "foob" in February 2018. There truly had to be angels watching over me as an MRI revealed a regional recurrence to the lymph nodes on the cancer side. Underwent ALND and 3 of 13 nodes, per my BS, "We're bursting w/cancer". This was never supposed to happen. On my last day of tx, my husband asked me for a divorce-he'd been having an affair w/a girl he went to high school with. He told me, "I didn't even know it was your last day of tx." We didn't have a good marriage to begin with and he offered no support throughout my tx. In fact, he asked me if my tx would "interfere with my hunting schedule". Adjusting to my new normal is putting it mildly. My body has been butchered, I feel like I'm 96, not 46 and still have reconstructive surgery to look forward to hopefully in the summer. People look at me and think I'm ok. My family is frustrated and do not understand why I have not bounced back yet. I'm exhausted all the time and working as a mental health therapist does not help matters. I am in therapy myself and on anti-anxiety and anti-depressant medications. I feel so alone and isolated sometimes. My younger sister was dx'd w/ Stage 3 triple positive IDC 6 months prior to my own dx, but she doesn't deal w/her emotions surrounding her experience- she also ended up pregnant when she decided to stop taking tamoxifen, so she is preoccupied w/getting ready to have a baby at the end of the month at age 42! I know everyone's journey is unique and everyone heals at their own time and speed, but will I ever feel "normal" again? I feel like I am just waiting for the other shoe to drop. I have been stalking these boards forever and draw hope and inspiration from the wonderful men and women on this board- Farmer Lucy, I love you and your byline- PTSD- you are not alone. What do I do to address my PTSD while homeschooling my kids, working full-time and going through a very nasty custody battle. I'm reminded every day what I've been through when I look in the mirror. I feel like cancer has aged me by at least 10 years. And the guilt I feel for what my children have been exposed to feels like it is going to consume me somedays. Financially we live paycheck to paycheck. I feel like I cannot shake some of the chemo brain despite the fact that I completed chemo around Thanksgiving last year. I try my hardest to have an attitude of gratitude. I do have really good days, but others, I feel like I am coming unraveled. Any words of encouragement or suggestions would be so greatly appreciated. I apologize for the lengthy text. I just finally got up the courage to share. LOL, I'm very superstitious so I refused to join BCO for the longest time, instead just stalking and lurking, for fear that if I did I would have a recurrence! Well that happened anyway so I finally just threw caution to the wind and joined! The people on these boards are amazing. Sending hugs and positive vibes to everyone out there.
0 -
FIrecracker - I am soooo sorry for what your going through. It's amazing how many men just can't step up to the plate. Are they scared? Well tough luck because so are we. Oh my - interfere with his hunting schedule. Sorry about the custody battle. Hope you have good friends who can support you - even if it's only a virtual hand hold. How in the world are you home schooling and working full time? Not to mention dealing with BC. Hope at least the ex-DH is paying child support.
Like you, I had a BMX and thought I was done, then had a local recurrence to a lymph node 2 years later so ALNC. Yes - everyone thinks we should be just great because "IT's OVER". Not over - but not always obvious. Sometimes you just have to tune out those people who don't understand - which is likely the majority. I hope you are able to get your reconstruction in the summer.
So glad you posted. It's a very safe place to vent - even if there are sometimes squabbles about the type of treatment to pursue. DON'T feel guilty about your kids. It 's not your fault you got cancer and certainly not your fault their father decided to leave. You didn't say their ages, but hopefully they have stepped up to the plate with helping around the house. If you haven't required them to take on some extra tasks, do so immediately.
Screw gratitude. What - thanks for cancer??? I can only imaging the rigors of your job in mental health while you're dealing with this. Glad you have a therapist to talk to and are on meds.
And to the topic of your thread - yes. After my first cancer 9 years ago, I thought I was one & done and basically put it aside & went skipping on my way - even though I knew recurrence or mets was always a possibility. After the 2nd diagnosis of recurrence 7 years ago and the ensuing treatment, it was much harder. Still, I am now 4+ years post treatment and I don't think about it every day. Of course, if I look in the mirror I think about it, but I try to exercise regularly and use yoga to put my fears in a box to the side to examine later. I'm able to stretch the "later" to a longer reach as time goes on.
Please know everyone on this site is pulling for you. We DO understand.
0 -
Firecracker - I see no “post" in what you're going through now. What an ordeal. I'm glad you are going to therapy. It does feel good to have someone listen. How are earth do you homeschool and work full time? Now throw in a divorce and cancer! Holy smokes! Have you ever explored a temporary option of school outside the home until things settle down? I'm not extremely aware of what it takes to homeschool, but some of my friends homeschool in groups. Any chance some of the other parents might help with that load for a while. One thing I do know is things have to be about you for a while. Kids are very resilient. My mom had BC when I was small, and In her letters she wrote about how I made peanut butter sandwiches for all the neighbor kids while she rested on the couch. I'm sure you can't see anything good coming from this mess, but I promise you there will be something. Your kids will learn compassion first hand. The bond between you and them will be so strong, nothing could ever, EVER break it.
I'm glad you have the meds to help you as well. No words of wisdom here. My mantra then and now is “keep on keeping on". Oh but there is one thing. When I was in the pit, I had suicidal thoughts. My counselor was a Stephen Minister from my church, her day job was as a social worker. She set me straight that first visit. She informed me in no uncertain terms that suicide is a terrible legacy for one's loves one. It is a pain they carry their entire lives. Did I want my kids to have that legacy? (Hell NO!) So from then on I stopped the active thoughts and instead prayed fervently the God would take me in my sleep. Ha.I hear you. I understand the pain you're in. I had terrible panic attacks. I had a lump in my throat that would rise up when the dark thoughts reared their head and I thought I would suffocate.Ever so slowly things improved. I'm still not back to my old self emotionally. They say trauma changes the brain. I believe it. One just has to take stock of where they are and what they have. One foot in front of the other. One minute at a time.
I'm not a big believer in just thinking positive. I am a believer in feeling what you feel.
You can't do it all. Your kids understand this. Your husband needs to get over this selfishness, be an example for the kids, and help out. Lean on anyone and everyone you can.
Hang in there. It's going to be hard work climbing out of this. I'm sensing you might be used to hard work. Sending you a gentle cyber hug.
0 -
p.s. KBeee just posted on another thread about things she did with her kids when she was diagnosed. I attach it.
0 -
Firecracker73, I'm so glad you posted here. I'm fairly new to the game but the men and women on these boards have so much wisdom to share and I often start to read the threads when I feel alone or overwhelmed. It puts things in perspective for me.
I am so, so sorry for what you're going through. Reading your post brought tears to my eyes. I can't imagine going through it all with no support system. It's so unfair. I really, really wish I had some helpful advice for you, but MinusTwo and Firecracker gave some helpful suggestions.
I have a pretty good support system, but even with that support I still feel alone often because they don't really GET it, if you know what I mean. I totally relate to what MinusTwo said about people expecting us to be great because IT is over. I think people just get tired of it all and are ready to move on, but we can't really do that, can we? I'm not a mental health therapist, but I am a high school teacher (same thing sometimes), so I understand what it's like to be exhausted all the time. I also used to homeschool my kids so I know how time (and energy) consuming it is. Is it possible you're expecting too much from yourself? I get that you're doing it because it's best for them, but you won't be any good to them if you don't take care of yourself first. After my diagnosis, I tried so hard to keep functioning at the same level I always did. I just couldn't do it- I had to let some things go. It really sucks and I'm still not ok with it, but I had to do it.
FarmerLucy- I want to thank you for posting about your darker thoughts. I've had them too, and felt I had no right to have them because my diagnosis could have been so much worse. For me it's not fear or panic attacks that trigger those thoughts (though my hot flashes often feel like panic attacks). It's just being so bone weary all the time and not seeing an end to it.
0 -
Hey Whatjusthappened---I'm 3 years out. I do get periods of time where I don't think about cancer, but it's not like for an entire day. There are too many memories or things that make you think of it---like taking tamoxifen in the morning, like when my armpit scar tissue hurts when reaching for a coffee mug out of the kitchen cabinet, or seeing the lymphedema bracelet on my wrist. I think it would be impossible to survive cancer and not be thinking about it, because it has such a huge impact on our lives. That said, I feel like you do get to a point where the thinking about it doesn't devastate you, or ruin the day or even the moment. It just "is." That's where I am now. It's really ok, but I do get insanely jealous of other women around me who haven't had cancer. Their lives are easier than ours in some very real ways, but they will (hopefully) never understand that. I know other people have problems too, I'm not saying that. But it's hard to not get jealous of women who can have a mammogram with normal pain, not excruciating scar tissue pain, and so forth.
0 -
from farmerlucy:
They say trauma changes the brain. I believe it. One just has to take stock of where they are and what they have. One foot in front of the other. One minute at a time.
I'm not a big believer in just thinking positive. I am a believer in feeling what you feel.
I don't think anyone can be positive 100% of the time. Can they? You have to own all your emotions whatever they are. Trust in these wise words posted above. I hope you have many more good days in the days ahead then worrying days. I still think about it too. I don't think there will be a day that I don't but I don't dwell on it too long. Just cuss the hair in the brush and the lopsided boobs getting dressed in the morning and off I go to conquer a new day!
0 -
I ended treatment in August. I think about it every day, but HOW I think of it is changing. Today I spoke to a breast cancer charity about giving them some pro bono marketing/PR help (I work in that field) and was researching a lingerie fashion show for survivors that I'd love to walk in someday. In other words, I have days where I think wow okay, this happened, what good can I make out of it? And those days, I am actually so excited. Good days! I do have them!
There are other days where I think about the fact that I am still in physical therapy b/c my elbow didn't like the whole surgery ordeal...that my boob still hurts from radiation. I did a fitness video yesterday and every time I lift my arm overhead quickly yes, I am reminded. And of course, many days wearing a bra still hurts. I can't tell you how many dumb bras I have bought! These are the "medium" days - not good, not bad, just a tiny bit of a bummer.
I do still have the odd day where I think cancer is coming back, what will I do, it will be worse next time. Or I cry remembering how scared I was. Those are the bad days. I am pleased to say that now they are few and far between - but it was once like that every day. I would say to myself please let me get through this day without crying and it took a long time to get there.
0 -
I still think about it every day, but it has totally changed over time.
When I was first diagnosed, I couldn't NOT think about it. It was constant and I was obsessed with educating myself. I couldn't concentrate on other things.
After surgery, I felt so much more relaxed. After recovering from surgery, I was able to concentrate again. I can work all day without a thought of cancer and I have conversations with friends that are not centered around cancer.
I still think about cancer daily, at random times, and usually at night when I look at this website.
I'm guessing that over time it will become less and less of a feature in my everyday life, especially when I'm totally done with reconstruction and PT.
0 -
I remember there was day that I was out and about (long after treatment was finished) and I realized that I had not woken up that morning thinking about cancer. It took a long time, but it did happen. I wish that for all of you. Love and gentle hugs.
0 -
I came back to this site because I was not thinking about cancer anymore and slacking off on exercising and eating healthy. In fact, I couldn't even remember details of my cancer DX after a while. I don't know if it's the side effect of my medication,but I have a hard time memorizing things. So I am back reeducating myself and getting motivation to take better care of myself.
0 -
I finished treatment in early January 2020, and am in PT through April. At first PT focused on scar tissue management (port scar, lumpectomy scar, lymphectomy scar), then we turned to strength building. I was amazed at how weak my core had gotten, how little balance I had, so every PT session, and every morning on my exercise mat reminds me what I've lost as a result of surgery and treatment. And stupid stuff, like random low level nausea, can bring back the visceral fear I had during the worst of chemo that it would never get better.
I made a friend during radiation who lives near me who has brain cancer and she's been a blessing - we can talk freely and graphically about what we're going through, and we always end up in better place emotionally when we part.
I try to be easy on myself - I just finished treatment last month - but it's hard. I want to be normal again, I want to be strong again. Intellectually I know I will be, but emotionally it can be hard work. Hang in there.
0 -
I have kind of accepted that I will always have cancer at the back of my mind. I just wish I were not FORCED to think about it so often because of the pain or discomfort from the TE. Or the pain in my shoulder. It's nearly 3 months from my MX and who knows when I'll be able to have the implant exchange now with Covid. I'm doing PT and see a psychologist 2xmonth and a hypnotherapist, so I'm working on trying to reframe expectations, adjust etc. I do feel very positive at times, focus on other things , enjoy the beauty of life etc. but it's harder when my body seems to drag me down with all its ailments. Maybe I should have posted this in the "steam room" ! It's helpful to read posts from those who seem to have turned the page years down the line. Now I just wish I could end this damn reconstruction process earlier. Sorry for the rant!
0 -
Mountainlover, please never apologize for a rant here. I wouldn't have called that a rant anyway. I am 2 years out and still think about it daily. I wish I didn't. It helps a lot to stay busy. I was doing better, then Covid hit. A month ago, my entire city and surrounding areas were hit with a derecho (land hurricane) and a lot of my favorite areas to walk in are closed indefinitely because there are so many trees down. Geez. I work in a school, as a kindergarten aide and love it. Couldn't even do it since we closed last March for Covid, then our entire school district had so many damaged buildings, that we just reopened 3 weeks ago. I am emotionally a lot happier being busy. I do worry about getting Covid, but being stuck at home all day wasn't fun anymore, and my mental health was worrisome. I was really getting depressed.
0 -
kksmom3, I probably know where you are. I'm 2 miles east of I-380 and a mile north of I-80. We lost several trees on our property and need (some day! when the roofers are free and the shingles are available!) a new roof. It certainly has been a distraction from the covid, the politics, and the cancer!
But yes to Whatjusthappened. Yes, I think about it every day, many times a day. My diagnosis was around when yours was, Feb 2019. Surgery, chemo, rads, 2nd surgery, PT, etc. And scars, and tinnitus, and my hair is very short, and so on and so on. Yes, it's become part of the background of my life, but not the kind of background I can ignore. This morning my husband and I met with the attorney to discuss our will revisions. It needed to be done anyway, and I don't plan to die any day soon. But the cancer makes it more clear than ever that bad things can happen, even when it's not in the plan.
I do hope someday it's even more ordinary, less surprising or unsettling than it is now. I hope it is for you, too.
0 -
Just some perspective. I'm just about 10 years out from my initial diagnosis and 8 years out from my recurrence. And really I don't think about BC every minute, or even every day anymore. It takes a long time and i hate the words "new normal", but it's true. Hopefully you'll all get there.
0 -
Thank you MinusTwo for giving the perspective of someone who is further down the road. I am hoping to get there one day!
0 -
So do I, thanks !
0 -
Sooo....I am going through a bit of PTSD at the moment. I found an axillary lump on the non-cancer side that I showed to my MO, who took it seriously. I went in for an ultrasound yesterday. The technologist went out of the room to talk to the radiologist and came back and told me that I shouldn't freak out if they call me in for a biopsy. She said it doesn't look like BC would typically look on US, but it doesn't look "normal" either. That's about all she could say, which I understand. I haven't had word yet from my MO, yet so I'm going to have to try to get through the weekend and somehow take my mind off it. My rational brain knows that there are lots of benign outcomes, but I've been on the wrong side of the odds with so many things that my irrational brain won't quiet down.
I'm keeping this one to myself (with exception of DH) until I have more information, so as not to freak everyone out. I just wanted to get it out to someone else in a safe place, since you ladies (and gentlemen) would understand the fear that this brings back up.
0 -
Holding you in my thoughts WhatJust - hope the outcome is positive, Try not to put the cart before the horse.
0 -
Thank you MinusTwo. Of course it's silly to read too much into it. I'm just going to keep very busy.
0 -
Please come back and update us. Prayers things will be ok.
0 -
MinusTwo and kksmom3, thank you for the positive thoughts. Nothing new to report other than I am waiting on the biopsy to be scheduled. It was birads 4a so that's promising at least.
0 -
I am also thinking of you, and keep my fingers crossed.
For what it's worth, I went through the same scare prior to my surgery in July this year, but it turned out to be nothing serious. During one of the countless biopsies of the suspicious masses in my left breast, the senior radiologist "didn't like the look" of one axillary node in the US. It was palpable, too. They biopsied it and it was not cancer.
0
