The Secret Suckiness Of Life After Breast Cancer

MexicoHeather

That was a very thoughtful piece. I just had another oncologist recommend therapy and an antidepressant. I am not depressed. My feelings are completely legitimate.

windingshores

I'm reading Pink Ribbon Blues, a great critique of the pink culture.

For new people reading this thread, the response to aromatase inhibitors varies. Some do not have bad side effects. Some find that regular exercise for at least 45 minutes at a time helps. Some suffer and even go off, though it is possible to try another one or do Tamoxifen instead, for most.

I have adjusted to the fact that people think breast cancer is no longer an issue in my life. I did not have chemo so for others it was a blip and they don't even think of it. My pathology results were not good (grade 3, LVI) and I had bought scarves for chemo but my Oncotype came back low, so no chemo afterall. As far as friends and family are concerned, it never happened. I have no breasts, and am flat, but that doesn't show.

Is this "after breast cancer"? I just feel like I have no idea. Are the meds just keeping it down? I try not to think about it but the effects on our lives can be subtle and insidious. Again to newbies, you can indeed resume life and find new interests so don't be too discourage by this. But the uncertainty lingers even if on the back burner. I have to say, that while health lasts, so does the gratitude.

ShetlandPony

Very well-put, NotVeryBrave.

MexicoHeather, yes. I had a normal and appropriate reaction to a devastating diagnosis, and with support I was able to find well-being in spite of cancer. I found that talking with a therapist who had experience working with cancer patients really helped me process my grief and come out on the other side of it. I did not need anti-depressants to do this. Some people do, and that is perfectly valid, but oncs shouldn't push them on everyone.

Trvler

Thanks so much for posting this. This is a great thread.

momof2doxies

Read my history...I have been through everything, X 2. Now I am to the point that I can say goodbye to the evil Aromasin. "A double edge sword" ...I stop the drug that has caused SO many side effects, resulting in the addition of 9 medications to deal with those side effects. I am very apprehensive to leave my only safety net to block a recurrence. My onco said that further treatment with AI's would mean that the side effects could be more significant. So this is it? Five years is all the statistics i am quoted.

beach2beach

Exactly, NotVeryBrave.

eafish

This article is on point and I'm so glad I found this string. I'm not alone. While "lucky", I'm two years post my diagnosis and one year post the hardest of the treatments. The inhibitors (we've cycled through all of them at this point) and all the drugs to counteract the side effects were so debilitating that I finally took myself off about 6 weeks ago. While many, the fatigue and neuropathy have been the worst. And if I hear one more doctor tell me to exercise I might lose it. How is that possible when you can barely move or function? I am seeing improvement but it's countered with the fact that I'm even more terrified of a re-occurrence. Family and friends are supportive but I look fine now so hard to really understand. I now "hide" as much as i can so as to not be a nuisance. I'm tired of always being a drag. Honestly the last year was harder than the surgery/chemo/radiation. I expected to be one of the smiling faces, but am still struggling to get there.

GreenEyes81

eafish, I am just out of "treatments", though I was lucky and had it easier. I am at the point I feel like the "you are all done" phase is the hardest. The wondering how long it will be till I am back in the fight. Ya, I'm good for today...but the mental battle is a whole new batter that NO ONE understands unless they are here in it with us.

Some days are better than others....but ya.

WorryWartSuzie

I read/skimmed this article. Whereas I appreciate this woman's experience with breast cancer, no 2 patients are alike. There was some truth to what she posted, but in all honesty, she was writing a "piece", so it was probably more edgy than a blog post, for example.

I still have times when I am angry, as well (which is probably fear more than anger now). I would not put a pen to paper and write about it in my current state for other cancer patients to see. I hate Pink-Tober as much as the rest of us on here and do not appreciate breasts being called "ta-tas" etc. Just keep in mind that everyone's experience is different. I don't want to live like that. Some of that is a choice. I've been through as much, if not more than she has as far as treatments and surgery, and I refuse to have a bleak outlook like that - it just makes things harder on the patient.

Meow13

I think the medical community and drug companies need to hear about the unacceptable side effects of "treatment", cancer should be treated without taking our QOL and health.

Finding a cure, that doesn't destroy our bodies, might help take the fright out of BC.

tessu

Thank you so mch for posting that article. I can relate at so many levels. Luckily I have the local support group as a place to vent, as husband has always considered my cancer as my problem not his, that all SEs are psychological and made up (except LE which is visually obvious), and doesn't even want to understand that fear of recurrance still haunts me with every new symptom, how frustrating it is that my brain doesn’t work right, and that I am so selfish sometimes to feel unhappy that I have to stuff a prosthesis into my bra if I want my clothes to fit in public.

JudyGG

Thank you for your post. You are definitely still a writer! Stories are slightly different but all the same- maybe some women really do feel "over it"?

windingshores

Breast Cancer Awareness and all that pink stuff are basically marketing. Breast cancer is used to sell stuff. Again, there are books on this topic. The origin of the word "survivor" is suspect as well. I choose to pay no attention to this stuff.

Our family already had dealt with so many serious health challenges, that we were used to the wandering, glazed eyes this writer describes, and knew better than to have expectations of understanding from anyone. I think this piece reflects a previously fortunate life. It also reflects an upper middle class viewpoint: many breast cancer patients do not have a husband with a stable job, or a husband at all, and have to work. Writing is a flexible job and with an income made by the spouse, at least money worries aren't contributing to the depression.

I have found the psychological effects to be subtle, and they do indeed get worse every year out. I think most of us live with the expectation, somewhere in us, that it is coming back and we just hope for more time. When my daughter flies off to the other coast for her 4 years of college, it affects me because I do not know if she will be back here living close enough to see often, within the time frame of my seeming remission. When I sign a lease for an apartment, I wonder if I will be signing another one. That kind of thing. These things are way in the back of my mind, but I know they are there.

Finally, I think the advice to exercise is legit. I wake up some mornings very stiff and in pain, but if I go to my Tai Chi class, I feel better. In fact I told my teacher that the only time I am pain free is while I am doing Tai Chi and I wish I could just do it for 8 hours. I also walk. If I walk 20 minutes, the pain gets worse, but if I keep going, for at least 45, things turn a corner and I feel better, more limber, my knees are loose and my back stops hurting. I also take Nia and dance classes that are appropriate.

I already had osteoporosis before Femara and it has gotten worse. I have three spinal fractures from a traumatic fall. Also spinal stenosis, myelopathy and spinal cord damage in my neck. And paresthesias since 2001. If I can do these things, anyone can.

It helps to have low expectations of people. It is difficult to know what to say to the "how are you?" question but in general there is no point in sharing. If that is lonely, then we have to deal with it within ourselves. Death, illness and divorce have always been taboo subjects. At some point everyone has to deal with these things, but most people don't want to think about troubles until they have them themselves.

Trvler

Windshores: Thank you for your post. I am impressed with how hard you push yourself and I am glad you are able to find some pain free time. I think your post is pretty accurate.

runor

If some of you haven't been to the Steam Room for Anger thread, head over if you need to vent. Or the Stupid Comments thread, another great one.

I have struggled since I had that bad mammogram in Dec 2016 and now, this Friday, Dec1 2017, I am having another diagnostic ultrasound and mammogram because I have sprouted a huge lump in my other breast! And the fear! The fear cannot be named. There is no word big enough, black enough to cover it. I feel like I am in a soundprrof booth, screaing for help, people walk past by the thousands, not hearing, not seeing, I am alone in a glass box with a monster that is tearing me to shreds and no one can help me. That is how I feel. Because that is how it actually is.

If I have a recurrence, I have it. Not anyone else. If I have to go through treatment it happens to my veins, my body, not anyone else's. There is no one who can step in and take this from me, even though they might want to. This is mine. Alone. In my body, in my head.

I feel so bad for my husband who seemed shocked through the first diagnosis and treatment and he clung to the hope that his wife wasn't going to die from this. The news wasn't great, but it wasn't ALL bad. Maybe he would not be a widower far sooner than expected. But this second lump ... he has lost whatever grip on positive he had and we have both fallen over some evil cliff.

I have a few, dear friends who get that this is a chronic mental condition that I will have to fight against for a long time. Bless them. They get it. They either ask sincerely or don't ask at all. They just know how it is and that I'm doing my best. I have other friends who figure the cancer was cut out, it is gone, you HAD cancer, you do not HAVE cancer, so what's the big deal, act like nothing happened because we all want to be comfy womfy and believe that bad things do not randomly happen. Cause that shit is scary as hell. Those people I draw away from because the burden it places on me to meet their requirement that I am okay, exhausts and defeats me.

That article is spot on.

catlady72

This thread is so spot-on with so many of my own feelings that it's nice to just read this and know I'm not alone. I like having this as a place to come and just read about people who "GET" it. I'm not sure anybody who hasn't been through this does get it.

My story...diagnosed back in April at age 45 and I wasn't exactly shocked. I always KNEW I'd get cancer of some kind, no doubt. My grandmother died in her 60s of colon cancer, my mom battled breast cancer and then lung cancer. She died in February of this year...two months before I was diagnosed. Good news is that because of her I have always had yearly mammograms, skin checks, bloodwork, and physicals. My primary doc found the lump during my physical, but I would have had a mammogram that month anyway. This began my spiral downward, and in my head my clock was already ticking. Ok my mom was diagnosed at age 60 and died at age 70. Guess I need to make the most of my next hopefully 10 years of life. At least my kids are a bit older. Will I get to be a grandmother like my mom was or not? It's hard to say as my kids are now 13, 15 and 17.

Even the idea to seek treatment wasn't easy, as my genetic testing cleared me for the well known BRCA stuff, but has me with an ATM genetic mutations that puts me at higher risk of breast cancer at an early age (BINGO!) and slightly higher risk than normal people for pancreatic cancer.

So what could I do and what did I do? I changed my diet drastically and read about stuff that might help me decrease me risk. I lost 30 pounds but lately I have fallen off the wagon a bit and need to get my eating back on track. I did go through with chemo and radiation after talking to several doctors and a genetic counselor about my risks. I'm about to go through hormone replacement therapy next. I am not sure when I'll have another scan but I'm already petrified about what they will find next time. I'm on 6-month lifetime scans because of my higher than normal risk.

Yet this thing will ALWAYS be on my mind. I can forget about it for a while, but that fear is still going to come out.

CeliaC

catlady72 - You are not alone in your feelings. Is it anti-estrogen therapy they will have you on next - i.e., Tamoxifen if pre-menopause or Aromatase Inhibitors if post-menopause? Bravo on the 30 lb weight loss & drastically changing your diet. I did the same. If you fell off the wagon a bit, no worries - get back on and do not beat yourself up. I fell off the wagon big time over TG holiday travels, but expect to drop that pretty easily now that I am back to my "normal" eating habits. Best wishes and gentle hugs to you.

catlady72

@CeliaC: Thanks so much for your kind words and support. Yes Tamoxifen is my next move, and my oncologist told me yesterday I could wait a while before starting it as I am healing from radiation still and just in case I have SEs but he doesn't expect that I will. He mentioned possibly a 5 pound weight gain or so and I've ready about tamoxifen "belly" so we'll see I guess. Since I have a vacation scheduled for NEXT weekend, I'm going to start the tamoxifen when I return just in case. I don't want to be in another state in case I have issues so another two weeks shouldn't be a big deal.

Thanks for letting me vent a bit here.

Newnorm

Brilliant, thanks for posting. Very true. The author hasn’t lost her writing skill; still made me laugh.

So nice to know I’m not alone

MexicoHeather

Good posts, ladies. I just got back from my second Christmas party where I had to explain that 2017 sucked but that I am not going to die. In October I had my ovaries removed and a total hysterectomy. Not exactly cocktail conversation. Can I even have a cocktail? Oh well.

Ozoner

Thank you for this story. Sometimes I chide myself, thinking “Poor me,” but this article puts a fine point on many of the issues I still face, 2-1/2 years after treatment.

It’s great to see this here and know I don’t need to apologise. I don’t want to take out my feelings on my husband or friends, but at least this validates many of my own feelings.

Thank you, thank you.

HB0225

Thank you for sharing your story. I shared it with a friend at work. She came in the next day and said "I need to give you a hug" she said she knew I was going through a lot but she had no idea how bad it could be because I always look like I am doing so well and I never complain or call in sick. She didn't know that when my office door is closed it is because my head is in the trash can vomiting. At least she didn't until she walked in on me on friday. Then she cried with me. It told her I couldn't share that story with family. It would be too much for them. I feel like I have to put on a happy face and just glad yhat I am alive. You cant tell people, I feel bad most of the time and I'm afraid of I slow down I might just give up.

EastcoastTS

HB0225:

I often feel like I have to put on the positive face, too. Or the I've-gotten-over-this face. And I feel so grateful -- but everyone just wants us to move on. While we're left completely changed by this experience. I'm not the same person anymore.

catlady72

I will admit I've always cried easily, but after this 2017 year I could fill buckets with the tears I've shed.

What threw me for a loop this weekend was learning of the death of somebody who has had a 5+ year battle with ovarian cancer. She was young, just a few years older than myself (and I'm 45) and she attended the same high school as I did and grew up in my neighborhood. I probably knew her younger brother a bit better, and since I am FB friends with him he posted about her death because they are very close. I found myself shedding real tears about her death. I think just having cancer makes you already feel so vulnerable and learning about somebody else losing their battle, especially somebody very close to your own age...it makes it that much harder. It hits close to home. Yet I really can't talk to anybody else about this except here because I truly don't think my family would understand this. I keep thinking about this young girl and her battle and how it's over already and way too soon. I'm sad and scared all over again.

Trvler

I am sorry, Catlady. Hugs to you.

TaRenee

Um yeah, I’m fine, thanks for asking. I look tired? Well, maybe a little bit. Why don’t I go to bed early? Well dang, what time do you think I should do that? Im already in bed by 7:30. 6:00? It’s not like I’m actually gonna sleep. Side effects? Nah, no problem, unless the night sweats and leg cramps and brain fog and hot flashes count, just to name a few. But yeah, I’m lucky I caught it early and it was “only” stage 1. Almost 2. But nobody counts the almost so, yeah, stage 1.

I can’t begin to tell how many times I’ve had some part of or all of that conversation. Do I feel validated knowing I’m not alone? Ya damn right I do. I wish people got it. The fear. The general feeling of bleh. The anxiety. The wondering when the other shoe is gonna fall.

Thank you for sharing that piece. I am glad to have been able to find this group. To lurk until I was brave enough to say something. Because saying something made it even more real. Sharing with strangers (who now seem as close or closer than some of my friends) made it something that was actually happening to me. That I NEEDED support to even think about what was happening was proof of how devastated I already was. And as so many have said, people in my life want me to go on with life like nothing happened. They can forget, but I’m still here with the “what if’s?” running through my mind. I wish I could smile it all away, put on makeup and go on about my day. But that takes more energy than I have I in the mornings. So deal with my makeupless face. I do good some days to put on chapstick.

There is no secret for us, the suckyness is for real.

catlady72

@Trvler: Thank you.

@TaRenee: I hear you! Thanks for being brave and posting. I am so, so with you here. The fear, the anxiety, the wondering when the other shoe will fall...yes, yes and YES! People really just don't get it unless they are really LIVING it, so the best we can do is just let them think we are fine I guess. Even if we really aren't, but sometimes we just have to do our best.

Oh and that girl I posted about...she was actually YOUNGER than me, battled ovarian cancer for five years. I think about her every single day and how devastated her family must be right now. Just so sad about that.

Castigame

I really wish there is a way to erase 2017 for me and my sisters and brothers on this forum.

Mexicoheather, I had total hyst late Oct. No I dont tell people I had hystrrctomy. Just dont feel like saying I had to remove female parts.

Eastcoast, No I am.not the same person. I put my foot down twice this year which shocked my DH. Going back to work in two wks. I am afraid I would curse my boss who does not like me out. Oh well if that happens, I would have to seek an employment lawyer.

For me, psychological damage from this crap is permanent. That is why positivity does not work for me. I cried my eyes out over total hyst yesterday afternoon.

Lastly, even though I fared this crap incredibly well, I ask myself daily how the bleep this crap happened.

Time to go for a walk.

NfrnoDave

That was a very heart warming post. A lot of her feelings are mine as well

I was diagnosed with breast cancer 6/16 with a mastectomy, chemo, Herceptin & tamoxifen. I signed up with this forum immediately but I was so overwhelmed that I had to stop looking for answers. I finally snapped out of my funk a few months ago and now I want to share,,,and hear your stories.

I am retired but working part time, so getting back to doing what I enjoy was pretty special. I still have many questions so please don’t turn your back on me just because I’m a guy. I have the same pain and concerns that you do, but I have been turned away from numerous support groups and their reason was “No Boys Allowed”

EastcoastTS

NfrnoDave:

Welcome, though sorry you're here, and ask away! This is a BC forum. Not for women only.

I'm a newbie, too, for the most part. January diagnosis.

Happy holidays to everyone!