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15 Shitty Things #Cancer Has Taught Me #breastcancer #womenshealth #advocacy #cancersucks

15 Shitty Things Cancer Has Taught Me

As you likely know by now, one of my top cancer pet peeves is the expectation out there that somehow cancer miraculously transforms you into a better version of your former self. You know, there are all those life lessons to learn.

Sure, being diagnosed with cancer makes you an unlucky soul, but at least your diagnosis also automatically granted you enrollment into the Cancer Enlightenment Program, which undoubtedly, you will benefit from.

If not, why not?

(The above is supposed to be sarcasm.)

This line of thinking sort of implies that somehow you needed this experience to get your priorities straight.

Again, there are all those life lessons to learn and epiphanies to be had.

If the transformation theory works for you, fine. But for me, all that enlightenment malarkey is total BS.

I started working on this post a couple years ago, so t’s been sitting in a folder for quite some time. (This is actually a watered-down version.) I hesitate to publish certain posts. This is one of them.

Why?

Because it’s a push-back sort of piece that perhaps some will not appreciate. It’s meant to be tongue-in-cheek. Sort of. Not everyone will appreciate my dry humor. Or sarcasm. It’s okay if you don’t.

Don’t take this post too seriously, okay? Then again…

So, you’ve been forewarned.

Enough with the stalling, here we go.

15 shitty things cancer has taught me:

1. I’ve pretty much failed the Cancer Enlightenment Program. Wait, not pretty much. I have failed it.

No grand lessons here. No epiphany. No re-shuffling of priorities. Still me. Not better. Probably worse. But still standing!

2. Being a cancer rebel is still more or less frowned upon. People tend to prefer conformity in (Pink) Cancer Land too.

Stirring things up is still oftentimes a no-no. Don’t make waves is probably the safer course.

3. If it looks like you haven’t moved on, people get uncomfortable. And judgmental. They might even start giving you that raised eyebrow look. (Have you been given the look? If not, be patient. You’ll likely get it.)

Oh sure, you’re allowed a certain amount of time to get over the messy parts, (like a year maybe) but then, it’s time to get on with it, honey. Same deal with grief, btw.

So, at nine years out now, I’ve clearly missed the getting over it deadline. Just one more reason for my big fat “F” in the Cancer Enlightenment Program.

4. Getting your breasts amputated and getting a “free” boob job is still sometimes considered a perk of breast cancer.

Seriously?

I still can’t believe this one.

You might want to read, Ten Reasons Why Breast Reconstruction Is Not a Boob Job!

5. Embrace the pink sisterhood like your life depends on it or else you are doing breast cancer all wrong.

Be strong. Act brave. Keep smiling. Keep your whining to a minimum. Prove you can still do it all. (like you ever could.) And on and on and on…

6. It’s probably best to keep your non-varnished cancer truths under-wraps.

Most people can’t handle the truth. Heck, they don’t even want to hear it.

7. If you refuse to do #6, you will likely be called negative.

So be it. I’ve been called worse.

8. Cancer makes you old before your time.

It just does. And the medical community sometimes isn’t helpful when they no longer know what to do with you, so they start implying that perhaps your long-term side effects and other issues you’re complaining about are probably just normal aging. And when you start realizing they could be right, you feel, well, even older.

(No wonder the elderly often get frustrated. When you’re old, you’re supposed to just suck it up and put up with shit?)

Of course, all this is still better than the alternative.

9. You will likely think of your life in terms of before cancer and after cancer from diagnosis day on out. Or at least I do. Dear Hubby does too.

For some of us, there was also life with breasts and now life without breasts. Pretty sure, deep down Dear Hubby thinks this way too, though he’s too kind to mention it.

Sure, I’ve got a reconstructed chest, but let me tell you, it is nothing like the real deal. Nothing.

10. Cancer is expensive, and I’m lucky to have decent insurance.

I always knew cancer treatment wasn’t cheap, but until you need it yourself, it’s hard to imagine the financial burden.

And then, there is the career upheaval. Another expense of a different sort.

11. Learning your cancer is hereditary sucks.

Now, I not only have to worry about myself, I also have to worry about family members. Cancer sucks. Period.

12. The blame game is still very much alive and well.

All those “did you” questions still lurk.

And now, there are new ones. I call these the “are you now” questions. Are you eating healthier now? Are you exercising more now? Are you still having that glass of wine now? And so on.

(Like I was living recklessly before with no regard to my lifestyle choices and sorta deserved all this.)

13. It’s never over even though many around you might believe, even insist, that it is. Or should be.

My one-word response, mirrors.

14. Cancer brings fatigue.

No need to say more, right?

15. The shittiest thing of all, of course, is that people you care about die from metastatic breast cancer. And the grief is real for those who die that you’ve never met in person too.

Many don’t understand how you can grieve for people you’ve never actually met. But you do. And it’s heartbreaking. Sometimes, I ask myself why I remain online at all.

But then I do. Because I can’t imagine not.

So, there you have 15 shitty things cancer has taught me. I’m sure there are more, but that oughta do for now. Maybe I’ll write a part 2 sometime. Or not.

If you haven’t yet written down some shitty things you’ve learned from cancer, I highly recommend that you do. It’s therapeutic.

I gotta say, writing this post and then publishing it, too, actually made me feel pretty darn good.

Turns out, the Positivity Pushers don’t know everything.

The Cancer Enlightenment Program be damned!

Now, it’s YOUR turn to share one or two shitty things cancer has taught you.

(If you don’t, I’m gonna look bad.) 

It’ll feel good. I promise.

Ready. Set. Go!

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Share a shitty thing or two that cancer has taught you.

Do you sometimes feel pressured to stay positive?

Do you ever feel like you’re expected to “find the good” in your cancer diagnosis?

If you like this post, please share it. Thank you!

15 Shitty Things #Cancer Has Taught Me #breastcancer #cancersucks #womenshealth #advocacy

71 thoughts to “15 Shitty Things Cancer Has Taught Me”

  1. I’ve learned that cancer is the “gift” that keeps on giving. Exemestane caused weakness in my bones, which most likely played a significant part of me breaking my wrist 9 months ago (first broken bone in my life) which led to ongoing lymphedema and limited use of my left hand, and the lymphedema played a part in my newest visitor, cellulitis, which happened three weeks ago. Wondering where the cancer voyage will take me next. That’s pretty shitty.

    I never expected to not regain my original strength or energy. That’s pretty shitty.

    My left nipple sits completely on the underside of my breast, not visible to me unless I pull the remaining part of my breast way up to take a look. That’s pretty shitty, to have a deformed breast. I am thankful that I do have some of it left, I really am. But it ain’t nothing like the old one.

    1. I hear you on that. My left nipple now faces left and what’s left of my breast is dented and a weird shade of light brown (only three weeks post radiation so maybe that’s not permanent). I’m 4 months post-op and it still hurts EVERY day. These things are pretty shitty.

    2. Nancie, Yep, all those things you mentioned are pretty darn shitty. The “gift” that keeps on giving indeed. Thank you for sharing.

  2. Well,ok. I pick D, all of the above. I haven’t found anything positive about this entire experience and I refuse to pretend otherwise. And when I see the commercials on tv for meds for MBC and all the side effects which we know to be true, my heart bleeds for the women taking them. This is quality of life?? I don’t know if I’ll ever be able to do it, but I also swore I’d never do chemo. There are no good answers. There are no promises. There are no positives except that we’re still here watching our families grow. Period.

    1. Donna, Other than meeting some wonderful people, I haven’t found anything positive either. Guess you and I are on the same page there. And oh my gosh, those commercials. What bugs me most about them is how the women always looks so “fine”. The commercials don’t seem very reality based, and yes, those side effects…But yes, we’re still here watching our families grow. That is a positive indeed. Thank you for adding your insights.

      1. I agree about everything you said! I am now 15 years out but not over it yet. My life is definitely not the same as far as energy, exercise, etc part of it is that I am older ( I did survive) and part is not. Like the weight I’ve gained. My body has totally transformed from this experience and not for the better. When this happened to me I was 41, in good shape, part of a Ssiling crew and only weighed 124 lbs. Now, I weigh 171 lbs. I don’t recognize myself when I look in the mirror. I am thankful that I survived but this has been hard to handle. Maybe I’m just vain. Cancer treatment killed my metabolism, I’m still trying to get it back. I could go on but I won’t. Thanks for writing your blog.
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  3. YES. I am generally pretty positive, but I was just compiling a similar list in my head this morning. The trigger was that I would like to become self-employed but worry about getting good enough health insurance. BLAH.

    1. Ashley, Yes, BLAH. It’s terrible that people need to worry about getting good enough health insurance. Where are our priorities? Don’t get me started…I hope you can make self-employment work, if that’s what you want. Good luck.

    2. Health insurance. Yep. Wouldn’t it be nice to take all these epiphanies and our “strength” and do something we love. Then “it was worth it”…..

      And have no or incredibly expensive insurance to cover the absolute certanty that you will need it. “Non-cancers” don’t understand that we think about this stuff way more than they ever will.

  4. This is your best all-time article, Nancy! I can identify with many of your points, but am stuck on #8. With permanent residual aches and pains and a leg full of large blood clots secondary to taking Tamoxifen (after trying to tolerate aromatase inhibitors for 4 years). I feel like a has-been. I cannot do so many things I want to do and have to work hard at feeling grateful for even being alive. This too shall pass, but am also really tired of hearing all the “stay positive” cheerleaders out there.
    We are each unique and will develop our own coping mechanisms on our own timeline. I’ve had great support from my husband and friends, but wish the medical community could develop better ways to treat the pain, the fatigue, the anxiety and the rest of the long term side effects of the treatment.
    Currently trying ‘chair yoga’ and hoping that helps to increase my strength and stamina.
    I am not a groupie person, so I can’t tell you how much I have appreciated your blog, Nancy! The variety of subjects you offer and the fact I can read them where and when I want to are perfect for me. Thank you!

    1. Jan, I’m glad you appreciate this post. As I mentioned, I hesitated to publish it. I’m sorry you have all those issues and can’t do all that you’d like. And yes, the stay positive cheerleaders do get annoying. I’m wondering if you participated in the survey I wrote about last week. Here’s the link in case you missed it: https://nancyspoint.com/endocrine-therapy-for-breast-cancer-let-your-voice-be-heard-in-this-research-survey/ Btw, I am not a groupie person either. Thank you for your kind words about the blog. I sincerely appreciate them. Thank you for reading and taking time to share.

      1. Thank you, Nancy. I did participate in the survey/study and I also sent it to 3 of my friends who have also had breast cancer, hoping they would choose to participate also.
        Had my annual mammogram last week and got the results today. All is good! Do love good news.

  5. Thanks for this post Nancy, I agree and certainly relate to what you write. Cancer has taught me so many shitty things I’d have to write a book! (I am trying to do that). If I had known the pitfalls and had the knowledge learned from my cancer ordeal *before I got the diagnosis* I could have avoided some of the shitty things. We learn a lot from each other’s experiences so I think sharing our stories and experiences is helpful to others and healing to ourselves.

    1. Rosalee, I am glad to hear you are writing a book! We could certainly use a few more reality-based cancer books out there. We do indeed learn a lot from each other’s experiences – cancer related or not. Thank you for sharing and good luck with your book.

  6. I’m right there with you. Can’t be positive about what is actively trying to kill me. Cancer is shitty. Period.

  7. So, I paid a fair amount of money and experienced an even greater amount of pain and hassle to keep my hair through chemo. Yeah, some of it was vanity, but most of why I chose this path was so not every single person who looked at me could immediately tell I was sick, whether they knew me or not. Well, it has backfired a bit, I think. Even though I’m still in active treatment, everyone acts as if I’m “back to normal.” They treat me as if I can do everything as well and with as much energy as I had before. Heck, I can barely walk after sitting for even 15 minutes or often times cannot even open the easiest of product packaging and am exhausted before I even get to work in the morning. No easy way to remind people of the situation…you either are labeled a complainer or a negative Nellie.

    1. Kim, I hear you. It’s hard when people expect you and everything else to be as before. Nothing about cancer is easy, that’s for sure. Just do the best you can, day by day. And don’t worry about being labeled. Speaking your truths does not make you a complainer. Btw, I’ve been called Negative Nancy. So be it. Thank you for sharing.

  8. Nancy ~ I have read your blog over the last year and a half of my breast cancer diagnosis and treatment. Your words and those of your faithful readers are a beacon of light in a dark place. The truth, the wisdom, the humor and the pain all come together as a healing balm for our wounded souls. Thank you from my heart ❤️Liz H.

  9. I agree with all the shitty list you present! And I really detest those telling me, “Well, at your age, what do you expect?” to my complaints of all the severe joint and muscle pain, exhaustion and fatigue, weakness, hair loss on my head and hair growth on my face, etc. etc.!! I went from age 68 to 98 in just a few short years, s/p cancer treatment and Arimidex!! I can barely stand up and walk even short distances now. It is a major undertaking to clean house, walk to the mailbox, shop for groceries and so on! I worked for years and years in long-term care. Specialized in gerontology nursing. I know that you don’t go to bed in good physical shape one day and then wake up the next morning, ready to call it quits due to sudden and extreme physical loss, except for those of us with cancer.

  10. A shitty thing cancer taught me: I am not who I thought I was. Not as strong,not as steady, not as smart. I’ll never have the same confidence again that I had in my b.c. (before cancer) life. It got cut out of me somehow.

    Shitty thing number 2: Survivor guilt is real in cancer land. I know because I have it. And when I am brave enough to say so, I find out that other people have it too. And nobody wants to admit it because it seems like we’re ungrateful to be alive. Which is definitely not the case.

    A good thing I’ve learned: Being honest is always best, always healing, even if it’s only for the moment that we speak our truth.

    So thank you, Nancy for being so honest yourself. And not shying away from 4-letter words to describe how you feel. Honestly, I love that about you.

    1. Andrea, Thank you for sharing a couple shitty things cancer has taught you. (And gosh, that survivor’s guilt is so real.) And thank you for sharing a good thing you’ve learned too. I agree that being honest is very healing – if only for the moment we speak our truth. Love how you put that. Thank you for your kind words. I don’t plan to start sugarcoating any time soon.

  11. I love your comment about the medical profession believing that getting old is a “treat” and that we should all just be grateful and put up with what happens to our bodies. The effect of Letrozole on my body has been positive from a clinical perspective (ie absolutely no oestrogen in my body) but this has brought its own joys – severe vaginal atrophy that means I couldn’t even pee in a straight line anymore. When I discussed this with my gynaecologist and said that I hadn’t been through all the hell of cancer treatments to spend the rest of my life unable to have any form of intimacy with my husband, his reply was that intimacy was a life-style choice and nothing to do with his clinical concerns!
    Thankfully I have an amazing breast surgeon who said that he hadn’t got me better for me to be miserable, did a load of research on my behalf and is now treating me with a very low dose topical oestrogen cream as the risks appear to be worth it. Result – self esteem back on track and feel more like me again.

    1. Suzanne, Gosh, the fist doc’s comment was pretty darn insensitive, not to mention unhelpful. Thank goodness your breast surgeon is a doc of a different sort. I’m glad that together you’ve come up with something to try. Must feel wonderful to have your self-esteem back and feel more like you again. Thank you for sharing.

  12. Since being diagnosed Stage 4, I find people think I’m at death’s door. I am not. It sucks that people think it and it sucks to realize that I could be. Fuck cancer. So I’m taking to making plans that are 9 years out from now just to show others that I haven’t given up and neither should they.

    1. Linda, I’m sure you’re getting some interesting reactions from people. Don’t hesitate to let them know when their comments/actions/whatever are hurtful and/or unhelpful. Good for you for making those plans. Thank you for sharing.

  13. Nancy with this and your other blogs, you hit the Nail on the Head!!! Good writing, my friend, if only on this technology online computer program. My point here is I am grateful to have met you online. I am very thankful I get to read this and other great writings. I so agree with you, when I am reading your writings. Shitty thing cancer taught Me is to ‘hate’ something, because I ‘hate’ cancer. Another shitty thing cancer taught Me, is how much my body is failing Me, cancer did this to Me. I know I would not be so weak if I didn’t take the Aromatase Inhibitor for almost 5 years now…Stage 111C Inflammatory breast cancer, surgeon took 19 lymph nodes, 12 having the cancer. Chemo, surgery, radiation, I am glad I am still here, but I have such a low quality of life. Thank you, again, Nancy, you are my friend on this journey we are going through, Much Love from Janet a.k.a. “Sunshine!” (I will write back when I make my list of the other shitty things cancer taught Me!)

    1. Janet, I am sorry your quality of life has taken such a hit. I am honored to be considered your friend. Thank you. Come back and share your list of shitty things any time.

  14. Sing it Sista! OMG, I’m definitely one for staying positive but sometimes you just gotta say that this F***ING SUCKS! I want to know why cussing makes me feel better? Seriously I can just shout F***, F***, F*** and it makes me feel better. I wonder why?!

    I’m ready to write a blog post on “Quit your whining”! I had a lab tech “at the cancer center” whine to me that it’s her birthday weekend and how much she hates her birthday. I was very nice to her but I did tell her how blessed she was to be having a birthday and that she should know that by now working at the cancer center. WTF?

    Then the greeter at Sam’s club whines that “well I guess I got up today and I’m at work!” What kinda greeting is that?! I’ve just endured 6 months of unemployment and I’m truly grateful for every healthy day I’m given.

    The day I was told that I had stage 3 breast cancer, I went to buy bras. Then there was a fuss at the cash register. The cashier told me that she was having a really bad day. At the point, I couldn’t say the word cancer when it was “my diagnosis”. I was thinking seriously, I bet I’m having a worse day than you.

    It has been a really rough 2 weeks for me. I’m not ready to share yet. But thanks for letting me rant. So now I just whined…haha. You made me smile. Thanks

    1. Kimberly, It’s funny, since cancer I find that I cuss a helluva lot more too! Whatever helps, right? I’m sorry you’ve had a rough two weeks. I will look for that blog post. Thank you for reading and taking time to comment. Feel free to rant anytime.

  15. A list of shitty things is a grand idea. Where to start?!?! I would have to say my biggest shit-surprise has been the fatigue that WILL NOT go away – don’t remember anyone mentioning that this would last (I’m at two years post treatment, still on meds). I get royally pissed that I have a job that I love, but I’m slapping myself to stay awake as I drive home!

    1. Suzanne, I know, right? I love the idea of a shitty things cancer has taught me list. It really does feel good to write it out. And gosh yes, the fatigue is something so many of us relate to. Please do stay awake on that drive home! Thank you for chiming in here.

  16. I agree with everything you said. Of course I do! I learned that not everything has a silver lining. I learned that healthy people are fearful of being sick so they must figure out what I did wrong so they can continue on in a cushy bubble, believing it could never happen to them.

    1. Eileen, Oh, my gosh, that silver thing is just one more way to frame something difficult, in this case cancer, as a gift. Well, that’s how I see that concept anyway. I know some feel differently, which is fine. What you mentioned about healthy people formulating that hypothesis might be right. I hate to think so though. Thank you for adding to this discussion. I always love hearing from you.

  17. I learned reconstruction can be more than worth it, massive infection plus radiation meant I was done with that challenge. I learned that the person I had taken care of did not want to reciprocate. I learned that doctors are afraid of me, I am like a hand grenade with the pin pulled half way out. I learned that your 15 shitty things are fact based and shared. Love your bold airing.

    1. Lin, Sounds like you’ve had your share of shittiness. I’m sorry. And wow, your hand grenade analogy is interesting and pretty darn descriptive. Thank you for sharing.

  18. I am still waiting to find the silver lining in all of this. Theng worst thing to me is not being the Grandma I used to be. I am too tired to play like I used to with my 6 grandchildren under 4. I can’t get on the ground with them and get back up. I can’t pick them up or put them in a swing and push them. I learned that I get breast lymphedema when I do that. I keep waiting to get back to my old self, but it might not happen.

    1. Ellen, I’m sorry you have those issues. It’s hard to not compare yourself to the old you, but try not to do that. I’m sure there are less-taxing things you can do with your grandchildren that you can all enjoy (I know that’s probably not what you want to hear), and as they get older there will hopefully be even more things that don’t require so much physical output on your part. And hopefully you will continue to be stronger as well. But yeah, those silver linings are nonexistent as far as I’m concerned. Thank you for taking time to share.

  19. I agree with everything you wrote to the point that I could have written it myself.
    Everything about breast cancer angers me and has from the moment I was told those 3 awful words.
    I just found your page today and I’m enjoying reading it.

    1. Oh Nancy this post rocks!!
      One of my shitty gripes are those people who tell me to stay positive or keep having a positive outlook come from those creeps who have never,ever had cancer. Maybe a good F….k you would do me good. God I hate those comments.
      And I hate explaining myself over and over to my adult children why it is hard to watch grandkids for more than 3-4 hours. Much as I love the little one there is no way in hell I could watch them for three days straight.
      It is REALLY shitty to keep explaining myself about how side effects linger for year. And oh yeah, when I explain neuropathy in my feet from chemo someone always has a better neuropathy story than mine..always from someone who has not had cancer.
      And finally..as I type this I can only see out of one eye cause chemo caused my eyes to go bad and I just had cataract surgery on the first eye. Just walking into the surgery center gave me the creeps.
      So much crap that no one gets it who hasn’t had shitty cancer.
      Thanks for letting me unload.

  20. LOL!….Guffaw!……Snort!
    That hand grenade quip, that just hit me like, well
    a hand grenade!
    I can totally relate. It’s not just the doctors,
    it’s…….. “everyone backs up when I walk in the room”!
    You can see people scattering like rats, fleeing from the plague that is I.
    The sideways glances, the hairy eyeballs, the sad nods of despair……………
    There she is, they whisper, the one who had boob cancer, gosh, she sure is different now.
    She used to be more tolerant of stupidity
    So understanding when you whined for hours about your sore toe
    So happy to help you whenever you needed it
    So glad to go out of her way even if she felt like shit
    So much more social and active
    So much thinner before she started taking “that pill” she bitches about all the time
    So much more agile and deft with her hands
    So much more patient
    So much less sarcastic
    So much happier…………………………
    What the hell is she crying about now?
    You would think she would be over it since shes cured now…………………
    I hear she had the “good kind of breast cancer”,
    (All right, so I’m being a little dramatic now)
    But, my breast cancer surgeon did say to me that I had the good kind of cancer
    (this was before I knew that a “good” kind existed
    and before I knew there were many different kinds)
    But I still like her anyway
    And my boyfriend did have the nerve to ask me what the hell I was crying about….once
    Oh, I still like him, too
    And I have been asked if I was cured or if I was in remission
    ???
    My Dad just says, Welcome to the golden years,…. we laugh…my Dad can joke with the best,
    I got his sense of humor and my mothers no nonsense attitude,
    which makes for quite a battle inside my head some days,
    they have made me the little snark that I am!
    Add a couple medications, add some aches and pains that suddenly come and go
    add a sudden nasty hot flash and a quick episode of dizziness and the sudden urge to pee
    a little bit of excruciating sudden wrist pain and sudden fatigue,
    a messy handful of “personal lubricant”
    And yes, there is the cussing and cursing, it sure does feel good to yell those out loud sometimes
    and there you have it, the hand grenade with the pin half out!
    Ready, set, pull, throw!
    And run!
    “F” bombs are everywhere!
    And I am pretty sure that even the devil says when I groan out of bed in the morning
    “Oh, shit, she’s up”…………………………..
    PS:
    Please refer to my recent update rant in the “15 Realities at Eight Years Post Cancer” post,
    a year later………..for more shittinessness
    Thanks again for the freedom to rant Nancy! You’re the bomb!…….snicker……….snort

  21. When I had breast cancer the first time, my family went to help out my former university roommate who had metastatic breast cancer, was a single mom, had been laid off, so had no sick benefits. We had reconnected in the chemo suite – I hadn’t seen her in years. I was tolerating chemo much better than her, had a husband and two capable sons, so we went and spent an afternoon doing yard work for her. I went in to have a cup of tea with her that day and on her bookshelf was a beautifully framed cross-stitch sampler with the words “Fuck Cancer!” I laughed and then I cried. It is exactly how I feel about this disease. The really shitty thing I’ve learned about breast cancer, which has only been reconfirmed now I have MBC is that it is a category 5 shitticane!

    1. Janet, I like that cross-stitch sampler message! I’m sorry to hear you now have MBC. Thank you for sharing and my best to you as you deal with your category 5 shitticane. Great way to describe it!

  22. Nancy, let me start by saying that I have missed blogging a lot and being more involved in our community. I plan on coming back soon.

    I love this post! You have described a lot of my shitty cancer lessons (need to do a post on this). I will add that apparently it was “best for me to get the cancer at a young age, that way I could handle the treatments” (I was told by an idiot)…my shitty lesson is that the losses of a young cancer patient are different of those from an older person, and they are all devastating in their own way. I am sorry we are both in this mess.

    1. Rebecca, Well, hello! Great to hear from you. I’ve missed you. But I understand your absence. There are a lot of shitty lessons and yes, there are some extra shitty ones when you are diagnosed so young. I look forward to a post from you whenever you’re ready. Thanks for chiming in.

  23. Oh yeah, thank God I have found somewhere that gets me. While I was appreciative of the peer support I received through a breast caner network the whole positivity thing eventually became oppressive and unrealistic. Two things I learned from my breast cancer:
    1) Diagnosis, surgery, chemo and radiation and the words “you can only ever be in remission” were a breeze to deal with compared to afterwards. That is, Aramatose Inhibitors. Being estrogen/progesterone positive means stripping your body of all estrogen. How does, no sex, constant urinary tract infections, excelerated ageing, sore bones, bloating, going completely bonkers sound? After trying all of them including Tamoxifan I weighed things up and threw caution to the wind and told my oncologist I am going drug free. Aghast! He said I could be dead in 18 months as I walked out of his surgery. That was 7 years ago. Your vagina never recovers by the way. So I had the Mona Lisa Touch – worked but only works for 12-18 months so needs to be repeated. That is when I decided on low dose vagifem which I counter with natural progesterone. I feel great. I am no longer crazy, I have myself back before cancer. Yes, I am probably at more risk of mastastic cancer but quality of life, remaining married, being happy, vibrant and healthy was more important to me than any percentage risk.
    The second thing cancer taught me is all those charities on the money train band-wagoon. Look, as a woman who has gone through breast cancer, I don’t need a nurse to hold my hand or bring me an ill-fitting bra in hospital while recovering from surgery or a “happy pack”. What I want is a cure! So whatever money people may have in their pockets to donate pleeeease donate to research to find a cure, not to provide a nurse. Two of my best friends are Clinician Nurse Specialists who still can’t tell me what a breast care nurse does that any other nurse can’t do or what your local gp can’t help you with. A high profile charity raising hundres of millions of dollars towards hiring breast care nurses is not what someone with breast cancer wants. Well I don’t anyway. I want a cure!

    1. Sue, preach! I couldn’t have said it any better myself!! I would have buried those aromatase inhibitors in a rat hole, but I was afraid it would seep into the ground water and make the whole neighborhood bonkers.

      1. Lisa. You are so right. Haha. I seemed ok first 5 weeks them whammo. Total nutbag baby! I so envied the women who took them without struggle. Our physiology is all so different to everyone else. I ended up listening to my own body and researched and read everything I could get my hands on and happy I didnt end up in divorce courts and nursing homes

        1. When given an opportunity to make a recommendation on them, Sue, I tell people facing that decision to at least try them. If you can tolerate them, you should take advantage of the benefit, and you cannot know until you try them. That said, if they interfere with your quality of life in a way that is more detrimental than you felt with cancer you should not be pressured into taking them by even a well-meaning medical team. I was fine on them until week 9. Then, my bones hurt so bad I was afraid I had cancer again. I have to work or I don’t have health insurance and I could not get out of bed. I wanted to die on that medication and had I stayed on it, cancer would have won it just would have been a different road to the boneyard.

          1. Hi Lisa. I understand you have an expensive health care system in America that relies on costly medical insurance. Our health system in Australia works differently. We have something called Medicare. 2% of all income tax pays for the system so everyone gets the treatment they need. Doesn’t matter who you are or how wealthy or poor you are. It doesn’t cost a cent to be treated for cancer. No wait lists, so surgery, chemo, radiation etc all free, whatever you need. Prescription drugs including Aramatose Inhibitors only cost a few dollars. Anyway I digress!!
            Yes Lisa, I tell people exactly the same as you do if they ask my opinion. I envied those who could withstand them – who doesn’t want better odds! Before making my decision I researched and I also talked to many medical professionals, not just oncologists. Those who were not oncologists mostly believed quality of life trumps misery and relationship breakdowns and excelerated old age. Before I made the decision I had to counsel myself to be prepared for mastastic cancer if it returned. I think what helped me make the decision is that if I got mestastic cancer there was no way it could be proven that not taking the drugs caused it because even taking the drugs it is not a guarantee just improves the odds.

  24. You learn who your friends are. A woman I thought was a very good friend. The day after my bilateral mastectomy she told me she was getting a boob job on Friday and that we could recover together. Needless to say, that relationship is over. She told me I was too negative.

    1. Lorie, you are so right. I limited who I told to who I could count on two hands. When it was over, I could count who mattered on one. It sounds cynical, I know, but it’s true. I’m single, too, and the people who asked me if I regretted not having a husband during a time like that. Yea, no.

  25. One shitty thing … the giant hematoma I got during my second horribly painful stereostactic biopsy, which I carried through an MRI, an ultrasound, the painful placement of the clip before my second lumpectomy, which fused to the scar tissue that formed after that lumpectomy, then, turned into a giant ball of god knows what as it was radiated, and was still draining old disgusting blood into my system 8 months after treatment. A second shitty thing … the guilt I developed for not being “as sick” as some cancer patients. The relentless people telling me I was lucky to be staged so early, as if anyone with breast cancer is lucky. I sat through rads with a lot of sicker people (bless them) and was scared to speak of my own illness because it wasn’t bad enough. I have a third, too … the anti-cancer/anti-estrogen wonder drug that’s supposed to save your life, but has side effects that make you want to die. You can’t save a life, then, expect me to take a drug that makes me question if my life was worth saving … they told me it decreased my chance of recurrence by 50%, but that meant my 4.9% risk of recurrence went to 2.6% and that’s not enough for me to suffer those side effects. To hell with cancer math, and the guilt they want me to carry for not doing everything I can to save my life by refusing to take that poison.

  26. LOL #TheRaisedEyebrow is a thing.
    Also, we SHOULD begin a #CancerEnlightenmentProgram (CEP) but like our own brand. Different kind of enlighten ha ha
    Thanks for the shout out link. I think all said and done, as tired of it all as I am, the did you questions are still the thing most likely to make me go from 0 to 100 in less than a second. In which I start spitting fire and screaming, I mean.

    Love to you and all here!

    1. CC, Yes, a different kind of CEP! Guess that’s sorta what are blogs are. ha I loved your “Did You?” post. So good. And now, there are the “Are You Now?” questions. Love back to you. Thank you for chiming in here. BTW, go ahead spitting fire and screaming when you need to. 🙂

  27. Hi Nancy,

    Your post lifted me up from the shitty feeling of feeling alone lol. You made me laugh and smile because I feel all the shitty things you listed too! and my list goes on. I’m new here and found your post because I woke up at 2AM this morning with my squirrel mind going and haven’t been able to go back to sleep. I’m 36 y/o with MBC- bone Mets and I have an 8y/o son who is my light ☀️. I can be an annoying cheerleader at times (cause I really was one) and I own it lol but I can also be a terrifying witch or just plain sad and it’s all good! And you acknowledge the piece that most people around avoid talking about. That right there is shitty – not talking about it.

    The ugly truth is where there is light there dark. And that darkness brings some shittiness: The pressure to stay positive all the time – I respect the motivation and encouragement. Always. I also respect when we can acknowledge the ugly dark truth that is in our face.

    Like right now I feel like I can spit fire about all the shitty things I learned from cancer but I have to find a way to go to sleep now and get ready for my 8 y/o son’s birthday party later this evening (see…this feeling of insomnia from hormone therapy treatments and pills that come with side effects is shitty too)

    Ok so to refocus some lessons I’ve learned from cancer: that it’s perfectly perfect to be imperfect in all this; that I can and will dance with love and hate on this journey; that I can fall and get up anytime I choose to do so; and that it’s ok to be with my pain; that it’s ok for me to scream F-you to cancer and also give it more love in return because the anger from this cancer is draining the F out of me!! Yes I’m that “angry flower girl” and It’s all good! So thank you for reminding me that I’m not alone, Nancy. I wish you and everyone on this journey lots of love! ~CJA

    1. Camilla, I’m glad to hear my post lifted you up. You certainly are not alone. And believe me, many of us have trouble sleeping sometimes too. We get that! Thank you for sharing some of your valuable insights. Keep speaking your truths. Hope your son’s party went well.

  28. I hope you don’t mind that I am here and commenting. I am not a breast cancer survivor but I am an esophageal cancer survivor.
    I found your blog when I was surfing last night and could hardly wait to be able to read more. You have a lot of feelings and emotions that many people I know feel but are “afraid” to let it known because they don’t want to hurt anyone’s feelings? Hell, I say tell them the truth and let them really know.
    I would really love to use parts of your blog (with links and proper recognition) in some of my support groups. Perhaps then some of them would understand that its okay that normal is just a word in the dictionary.

    1. Nancy, You are more than welcome to comment here any time. Much of this crosses over to other types of cancer and, of course, all cancer is shitty! I’m glad you found me. I appreciate you taking time to let me know your thoughts. Feel free to share posts/links with your support group. Proper credit is appreciated. I hope some of my pieces are helpful. Thank you for stopping by. My best to you.

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