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#BreastCancerRealityCheck – Readers Share Realities About Life Post-Breast Cancer Diagnosis

Well, we’ve made it. It’s Halloween. 🎃 This means it’s the end of another Breast Cancer Awareness Month. Whew, right? Actually, I didn’t find it too annoying this year. Of course, I didn’t venture out much into Retail Land. Sometimes it’s a really good thing to be a homebody. I wonder if the fact more people are shopping online has reduced the pink ribbon shenanigans in brick and mortar stores.

What do you think?

Did you see a lot of pink products or pink ribbons this year? Did you go out much?

Be sure to share in the comments.

I decided to wrap-up BCAM this year by sharing some thoughts from you, my Dear Readers, about your breast cancer realities. So, I asked my subscribers for their input. I always appreciate your thoughts and insights. I mean, sometimes I get sick of my own.

I did share 15 of my many breast cancer realities in this earlier post in case you’re interested.

All credit for starting the #BreastCancerRealityCheck hashtag (and check mark image above) goes to friends and fellow advocates:  @Cancer Curmudgeon, @barbieslosingit, @abcdiagnosis and @bccww. Thank you, ladies! (Those are their Twitter handles.)

Let’s start with some thoughts from my friend and fellow blogger, Cancer Curmudgeon:

My friends and I were chatting on Twitter a couple years ago about just how WRONG the media and culture seems to get breast cancer—you know, always the same old fight/win/stay positive/pink stuff. We thought we’d get a hashtag going, get others to say what REALLY happens—and maybe, just maybe, people would start to “get it”.

Personally, I’ve loved the honesty of those participating in the #, even the hard to read stuff. It just has to be said. I’ve always been pretty open—too open—but I realize I’ve been reticent about financial toxicity. I challenge myself to share the warts and all about that—how it isn’t just cost of care but how post treatment side effects impact how much I can work—how I work, how capable I am. I’m 47, but feel like I’m 60 something. I fear what my life will be like when I really am 60.

Thank you (and your friends too) for starting this hashtag, Cancer Curmudgeon, and thank you for bringing up an important topic and side effect of cancer –  financial toxicity.

Linda shared the following about her breast cancer reality:

Cancer shadows everything I do, every medical thing that happens to me. My breast cancer reality is that I live with fear every day. If my bones ache in the morning, I wonder, has my cancer traveled to my bones? Or is it the medicine I need to take for 10 years causing this pain?

My cancer reality is that I will be taking mega doses of vitamins as well as Anastrazole for 10 years. Why 10 years? Why not 15? Or 20?

My breast cancer reality is that whenever I get anything else, cancer is always the cloud that hangs over it. When I had a brain tumor, the worry was that it was breast cancer invading my brain. Every doc I saw for the four days I was in the hospital told me they thought it was cancer. It was not. When I had a stroke this past spring, all the medical people asked me cancer questions. Cancer shadows everything.

 I don’t mean to sound so gloomy. I have a lot to be thankful for. But it’s been a rough day.

Anyone relate? Remember, sharing your truths doesn’t mean you aren’t grateful too. Two (or more) things/feelings can be true at the same time. Thank you for your honesty, Linda.

As Becky prepared for her recent CT scan, she shared about her reality preparing for it:

Me at this moment. Marked up with sharpies, drinking disgusting contrast fluids and about to have my 2nd CT scan… today. Not the least bit pretty!

Yeah, there is NOTHING pretty about breast cancer. I hope your scan went okay, Becky.

Alene, an oncology nurse, blogger, author, advocate and founder of Cancer Harbors, shared this:

As an oncology nurse, I spend so much time correcting people’s misconceptions about cancer, breast cancer and metastatic breast cancer that I am calling for a cancer literacy effort to educate the public, including healthcare professionals, because they need a #breastcancerrealitycheck too!

Alene works tirelessly advocating for all cancer patients. Read my review of her book, Navigating the C:  A Nurse Charts the Course for Cancer Survivorship. Her book is available here.

Claudia, who blogs at My Left Breast, shared her thoughts on October, recurrence risk and how she chooses to frame her cancer today in a recent post:

It’s now 8 years since my breast cancer was diagnosed, and I am much more cautious about how I speak of it or of my relationship to cancer. I no longer call myself a survivor. I say I’m NED (no evidence of disease), which seems to be a truer explanation of my situation…I did the numbers in my head. I’m on Tamoxifen, which hopefully keeps my cancer from coming back for at least another 2 more years. That gets me to 64 years old. If I have a recurrence after that, maybe I’ll have another 5-10 years, depending on where it’s spread. Which gets me to 69 – 74 years old, and that calms me down a bit.

Have you done that mental math exercise in your head too? I have.

Susan has metastatic breast cancer. She blogs about it at Let Us Be Mermaids. Susan shared the following realities about her life living with mbc:

Some MBC realities I have been facing for the last 5 years include being in treatment for the rest of my life. Unfortunately, some treatments do not last very long and progression sets in. When this happens, it’s time to begin a new treatment. It’s a necessity to keep you alive.

Over 40,000 women and men die every year from MBC. Many friends are included in this number.

Clinical trials are not just last resort treatments. They give you access to drugs/treatments you would not be able to just get off the shelf.

Thank you for sharing, Susan. Remember to check out Susan’s blog!

Susan R, another friend and fellow blogger at Stickit2Stage4 and President of METUP, shared this:

Not only is Metastatic Breast Cancer the most difficult diagnosis to come to terms with because it’s a terminal illness but as you’re living through it and trying to stay alive, you’re also having to watch your friends who are doing the same, die around you. You begin to feel an engulfing and overwhelming sense of guilt. While you should be happy your treatment plan is working, you end up suffering from Survivor Guilt, which for me, was the worst combination of depression and PTSD.

Survivor guilt is very real for many breast cancer patients, but as Susan poignantly points out, it’s especially difficult for our friends with metastatic disease. Thank you for sharing about this reality, Susan.

Janine chose to share about her dear sister for her #breastcancerrealitycheck:

I was diagnosed four months after my older sister died of metastatic breast cancer. Maureen Adele was her name. She was 53.

#breastcancerrealitycheck
Janine and Maureen two weeks before Maureen’s death.

Thank you, Janine, for sharing about your beautiful sister. Too many continue to die from metastatic breast cancer.  Too many, just too many.

Marie writes the blog, Journeying Beyond Breast Cancer. She shared about a painful reality she continues to  live with every day since cancer:

The hardest part of my breast cancer experience is living with the legacy of infertility. I carry within me an invisible scar, a forever pain that is often misunderstood, minimized or ignored. While many women do go on to have families after breast cancer, this sadly wasn’t my reality. It’s so important that pre-menopausal women with a diagnosis of breast cancer receive timely information to support their decision-making around fertility preservation. For many women, the ability to conceive a child after breast cancer represents not only surviving the disease, but the fulfillment of their hopes and dreams for the future.

Marie’s comments are so moving and so important. The fact she feels her pain is often misunderstood, minimized or ignored breaks my heart and honestly, makes me a little mad too.

All scars are not visible, and often the scars we cannot see are the most painful and the ones that never fade.

Angela offered this:

You ask about our breast cancer reality now. I think I have too many realities now. I want more fantasy, damn it!

I always appreciate Angela’s humor and knew you would too. Her words seem like a good way to wrap this up. Thanks, Angela.

So, there you have a few #breastcancerrealitychecks from Dear Readers. Nothing pretty or pink in those realities.

Now, it’s YOUR turn to share!

Do you want to receive weekly updates from Nancy’s Point? Of course you do, right? Click to sign up.

Did you see less pink ribbon shenanigans this October?

What are one or two (or more) of YOUR (or your loved one’s) breast cancer realities?

#BreastCancerRealityCheck – Let’s keep this hashtag going and not just in October!

 

#BreastCancerRealityCheck, A #Pinktober Wrap Up, Readers Share #breastcancer #breastcancerawareness #breastcancerawarenssmonth

 

12 thoughts on “#BreastCancerRealityCheck – Readers Share Realities About Life Post-Breast Cancer Diagnosis

  1. Wow. So many good thoughts here. I did the mental math and that exercise made me feel mildly better. And I never thought about the emotional scars for a younger woman.

    Thank you, Nancy! Keep pointing stuff out for us!

    1. Linda, I agree, so many honest realities shared here. There are a lot of emotional scars, but the one Marie carries is a particularly painful one. Thank you for reading and taking time to comment.

  2. Thanks for including me in the post, Nancy. One thing I will say that I’ve noticed is that for those companies who ARE still using the pink ribbon, most of them seem to be donating their money to research organizations vs awareness generation which is a good thing in my book. So, perhaps some of our words are getting through. Here’s to November and the holidays! Best, Claudia xo

    1. Claudia, I hope you’re right about those companies donating more $$ to research these days. Perhaps the messages so many have been talking about for years now are starting to have an impact. I hope so. Yes, here’s to November and the holidays. Best to you as well and thank you so much for contributing for this post.

  3. Thank you Nancy for including my 2 cents in this post!
    I truly am sick of the realities I must put up with now.
    I’m sick of feeling like crap, sleeping like crap, taking crap, giving crap,
    worrying about crap, crying about crap, forgetting crap…….
    what was I talking about?…….
    I wish to go back in time to my blissfully ignorant days before breast cancer darkened my doorstep. The days when even BCAM meant very little to me since I never knew anyone personally who had breast cancer. But who isn’t aware of breast cancer? The real failure of this month is awareness equals “Well, we made you aware”……………….
    I’m sick of being so aware of everything……..
    And by the way, November is “Manatee Awareness Month”
    Manatees are kind of like fantasy creatures, they look kinda silly,
    and you can’t help but smile when you see one.
    Now let’s read below a few more tidbits of awareness you didn’t know you needed to know
    I’m having difficulty deciding what to “celebrate” on those days………………:/

    November 4, 2018

    Daylight Savings Time Ends

    *National Chicken Lady Day
    (World Vegan Day was November 1st, you missed it!)

    *National Candy Day

    *National Easy-Bake Oven Day

    *Use Your Common Sense Day

    Zero Tasking Day

    November 7, 2018

    *International Merlot Day

    International Stress Awareness Day

    *National Bittersweet Chocolate with Almonds Day

    **************************************
    Anyway, enough of this silliness.
    I apologize for getting sidetracked again……..
    And thank you again Nancy, for allowing us all to remain “uncensored”
    when we share our individual stories. We need to be able to “let it all out”!
    Somehow, being able to share here keeps me from screaming thru the trees!, LOreallyL.

    1. Tarzangela, You are welcome to share your two cents anytime. And you’re right about manatees, you can’t help but smile when you look at them. Had no idea November was their month.

  4. Thank you Nancy–this is wonderful. Thanks for carrying the flame of #BreastCancerRealityCheck this year. For me personally, I barely noticed BCAM–too many other horrendous realities took up my mental energy that for once, I just didn’t see the pink as much.
    But I will keep striving to see if the narrative can change–I just get so frustrated with the stagnation of all the “awareness”–as you know.
    xxWendi

    1. CC, I think we all get frustrated with that stagnation, but still, I think a little reality is seeping through to the outside world. I hope so anyway. Thanks again to you and your friends for starting the #breastcancerrealitycheck. It’s needed. And not just during October.

    1. Marie, Breast cancer reality is sobering, but as Cancer Curmudgeon said in the post about the hard stuff, “it just needs to be said.” And too often it isn’t or the hard stuff is glossed over. Thank you for sharing a painful reality you live with and for reminding younger women who are diagnosed to have those important discussions about fertility preservation. x

  5. Nancy,
    My post cancer reality (among all the others) is the reality that even my family members don’t get that fatique lingers even after five years. I am 71 and they find it odd that I take afternoon naps and staying up past 9:30 is just to hard for me. I have stopped explaining myself. I wish that I could get thru to them. sigh…

    1. Mary Ellen, I hear you. You don’t have to keep explaining yourself, so it’s fine to stop trying. Thank you for sharing about this particular reality. You’re certainly not alone regarding this one.

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