Do you ever feel like you're doing cancer survivorship all wrong? #cancersurvivor #breastcancer

Do You Ever Feel Like You’re Doing Cancer Survivorship All Wrong?

Once you’ve been diagnosed with cancer and have been flung into the rigors of treatment, it can sometimes feel as if you’re doing cancer all wrong.

There are unspoken societal messages out there about how a person is supposed to do cancer. And with breast cancer, there are even more expectations, for some reason I’ve yet to figure out. We’ve all heard them, probably many times.

Be strong. Be brave. Fight hard. Stay positive. Keep the faith. Have hope. Wear pink. Eat this. Avoid that. Do this. Never do that. The list goes on and on.

For some, such messages are helpful. For some, not so much.

Why do some find these messages hurtful, or at the least, annoying?

Well, when you think about it, no one really likes to be told how to do things do they? And no one likes to feel as if she/he isn’t measuring up, which is exactly the effect such messages can have on a person who is not feeling strong, brave or positive.

There is no right way to do cancer. There just isn’t. 

When your initial treatment ends, if you’re one of the “lucky” ones and your treatment does have an end, you then enter survivorship mode, often times also referred to as your new normal. Here the waters calm a bit, but on some days they’re still pretty darn choppy.

With a bit of practice and lots of trial and error, you learn to navigate your way in survivorship mode, too. Notice I said navigate your way in it, not through it. It’s not like this mode has an expiration date, well unless you count dying, which I am not.

And those dealing with metastatic disease are grappling with survivorship in a different, very literal sense.

Once you’ve been diagnosed with cancer, from there on out, you’ll always have that label attached to you. You’ll always be a cancer survivor, even if you don’t like or want this particular label. Sort of a daunting thought. Or a really great one depending on your perspective. After all, you’re still surviving. But the cancer label stays with you. It’s part of your identity – a permanent scarlet letter of sorts. You’re never completely free of the big ‘C’ again.

Last year, I wrote about how I felt as if I were tiptoeing through survivorship. I guess I still feel that way. I tiptoe, but this doesn’t mean I keep quiet while I tiptoe. I can’t. I won’t.

Of course, people do survivorship in very different ways.

Some people make big changes in their lives. Some make smaller ones. Some turn into fierce advocates attending conferences all over the country or even the world. Some start blogging and others stop blogging. Some walk or run in races. Some wouldn’t dream of it. Some wish never to read, talk or think about cancer again. And some cannot read, talk or think about much else. Some join or start support groups. Some drop out. Some turn outward. Some turn inward.

I’m somewhere in the middle, I guess.

There are societal messages out there about how to do this part too.

Move on. Be done. Put it behind you. Hurry up. Don’t talk about it. It’s over. And the one that I find really annoying, be grateful – you’re alive aren’t you? I think this one really means, “be quiet”.

Again, some are okay with the messages. And some are not.

Just as there is no right way to do cancer, there is no right way to do survivorship either.

Each person must do both in ways that feel right for her/him.

Figuring out how to do survivorship can be challenging, to say the least.

I’m still figuring out what works for me and what doesn’t.

I’m still a work in progress.

Cancer or no cancer, I guess we all are.

Do you ever feel like you are doing cancer survivorship all wrong?


Do you ever feel like you are doing #cancer #survivorship all wrong? #breastcancer

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44 thoughts to “Do You Ever Feel Like You’re Doing Cancer Survivorship All Wrong?”

      1. Nancy
        Do you know anyone who has had heart
        Problems in survivorship from
        Chemo. Radiation. And Herceptin IV
        For a year?
        If so, I would love to know about it.
        I am struggling.

        1. AnnMarie, I can’t think of anyone off the top of my head. I could pose this question on Facebook. I am sorry you are struggling.

  1. Just as there are many types and stages of breast cancer, and many kinds of treatment and surgery options, there are also many ways to approach survivorship. I wouldn’t think of telling someone which surgery to have or whether or not to do chemo. Those are personal choices from an individual’s own perspective. The same holds for survivorship. There is no mold. It is unchartered territory for anyone facing it, but really each new day is unchartered territory for all of us, cancer diagnosis or not. I do, however, appreciate hearing about how and why other people make the choices they do and being given a safe place to share my own experiences. It all helps me find my way on my path. This blog is one of those places where sharing is safe and no one is brandishing the stick of “this way is the best or only way.” That means a lot. Thanks Nancy!

    1. Lisa, “There is no mold.” Gosh, I love that simple statement. And yes, it is unchartered territory in survivorship too. I also appreciate hearing all the different choices and opinions that others make and have. There’s so much to learn from each other. Thanks for reading and sharing your insights. Your kindness and compassion always shine through in your words. And yes, who needs a ‘stick’ waved at them, right?

  2. Yes, I think I’ve even been told I’m “wrong”. It took a long time for me to shake that off, stop caring, and even communicate, via blog, my own “how” I’m doing cancer.

    1. Cancer Curmudgeon, There are a lot of unspoken messages being delivered all the time about how to do cancer. This doesn’t seem to happen as much with other diseases or ailments, which is interesting. Good for you for “shaking off” and doing this your way. You’re the Cancer Curmudgeon after all! Thanks for reading and commenting.

  3. Of course I’m doing survivorship all wrong!

    Not positive enough.
    Not out doing cancer walks and runs (hey if neuropathy ended my daily walks, don’t ask more).

    One lady even told me I went to the “wrong” doctor. If I had gone to hers, I, too, could have just had a lumpectomy and skipped all those other nasty things.

    Fatigue? Side effects? Yes, I’m still in treatment. No, I never got over everything from the original treatments either. Sorry, but I’m human, some days I just need to talk about it.

    And puleeeeeze, when I have the pre-scan jitters, don’t quote me what Jesus said about not worrying. He and I have had a number of very long talks about that, on my knees, and HE UNDERSTANDS!

    I think that about covers it!
    Yep! I’m doing this survivorship thing all wrong. Except for one more thing, I am still here! That should count for something.

    And through it all, I still see life as a gift, maybe now more than before.

    1. Elizabeth, It’s hard to imagine someone having the guts to tell you where “you’ve gone wrong” with your cancer experience/choices etc. And I love your comment about the Jesus quote. And yes, being here counts for a whole lot! Thanks for reading and for sharing your candid thoughts.

    2. Elizabeth, I love you. You basically summed up exactly how I feel and how I felt during treatment. Wish we were in the same circle so we could commiserate. Hugs to you!

  4. There’s no right or wrong, only what’s best for each of us. But that said, we don’t finish treatment with necessarily a clear road map in front of us. I think our way evolves and can change over time, and that’s fine and as it should be whether or not we’ve had a cancer diagnosis.

    1. Lisa, Learning how to make your way through survivorship is a process, too, and like you said, there is no clear road map. The way we do things does evolve and change and that’s as it should be, cancer or no cancer. Thanks for reading and sharing.

  5. I am 99% sure I am doing survivorship all wrong. I also think I am mildly paranoid and probably everyone thinks I am mildly paranoid aagggghhh (I am really good at making lumpy things it seems – who wouldn’t be I guess)! How do you win at this game? I guess you don’t. We all have to do what we do best to cope! <3

    1. Mandi, Perhaps after a cancer diagnosis, we are all mildly paranoid. And yes, we all cope in our own way. Thanks for reading and commenting.

  6. You gave me a lot to think about! I sometimes feel that I’m not being enough of an advocate, not participating in enough walks, giving to enough cancer charities, not doing enough for the cause.

    I sometimes feel I’m not fully embracing the complete devotion to a perfect, healthy lifestyle- that every time I eat ice cream or take a sip of wine I’m taking a chance on my life. This is followed by guilt because I have two boys 11 & 9 to live for. That is followed by a belief deep in my core that I am not meant to live a perfect, clean, stringently careful life. But a better, healthier life just to help lower risk factors. The stress of trying to live life perfectly would probably kill me!

    1. Lauren, You should never feel as if you aren’t doing enough in terms of advocacy. Each person chooses what works for her with that too. You’re probably doing more than you realize just by your day-to-day contact with family and friends. And yes, the healthy life-style choices are important, but as you said trying to be “perfect” would be more than most of us could handle. We have to live and enjoy living too, right? We do the best we can. Thanks for reading and for sharing your thoughts.

  7. Hi Nancy, I have been a silent reader of your blog for a few weeks now as I am on my 2nd diagnosis of BC in three years and have opted for a bi-lateral mastectomy which is taking place on July 10th. Your post about preparing for such a thing is great and gives me the inside story! I also write a blog and have been doing so since my first pass at breast cancer but more in earnest since my recent repeat performance. I was wondering if it would be ok for me to post my blog address here? Most of my readers have not been through this so would love to get advice and support from other folks who have traveled this path.

    With love and thanks for helping us on journey,

    1. Amanda, Well, I’m glad you decided not to keep silent! I’m also glad you found my preparing for a mastectomy post helpful – just typing that feels weird. I mean you cannot truly prepare for such a thing, right? Good luck with your upcoming surgery. And yes, of course you can post your link here! Please do. Sharing is what this is all about. Thanks so much for reading and commenting. Keep me posted.

  8. You’re right, you can’t really prepare but I wouldn’t’ve known to buy the drain vest thingy and instead would’ve had to pay my teenage girls to carry the drains around for me!

    Thanks again,

  9. I was diagnosed with breast cancer through the ’50’ year age mammogram. I am eternally grateful to the doctors who treated me and gave me a 100% cure. I have put it behind me although, at the back of my mind is always the question as to where the secondary is going to pop up! I have been free of it for 14 years. And I thank God every day.

  10. Nancy, this is such a worthwhile post. I don’t feel I’m doing cancer survivorship wrong because how a person deals with this (if he/she is lucky enough to survive) is such an individual process. There’s no wrong or right.

    Lately, I’ve been feeling out of sorts because I’ve been told on social media that for me to be out of treatment and to have survived 13 years past treatment that it’s time to move on. I feel my experience is negated. It kind of stifled my writing. But I know that I have every right to express my experience because it is an authentic cancer experience, and survivorship is fraught with so many problems, I have a right to discuss them.

    I’m rambling but I guess my point is that there is NO way to do cancer survivorship right, and being that I had been diagnosed with cancer years ago, doesn’t mean my sharing my cancer experiences isn’t valid.

    Wonderful post, Nancy!

    1. Beth, I guess you and I are sort of “old-timers” now in the blogosphere as we’ve been at a while. Sometimes I wonder about the moving on thing too, but I’m not ready. I still have so much to say! You absolutely have every right to keep on sharing and writing about your cancer experiences (and any other experience you choose). Cancer changes you for good and the adapting and evolving post-diagnosis goes on for the rest of your life. Insights from all stages of cancer and all stages of NED, are valuable, helpful and much needed. So keep at it! Thanks for reading and commenting.

    2. Beth and Nancy,
      You both have accumulated so much wisdom, so much that helps us. Please do not listen to nay-sayers who say “move on.” I feel like in many ways you have reclaimed your lives, but you have also found a way to help others that only those who have been there can.
      And you have a special gift of including and helping and understanding those of us who are metastatic.
      Thank you both.

      1. Elizabeth, What a nice thing to say. You’re so kind. Thank you. Writing about this stuff and advocating is how I coped and how I still cope. It’s how I do “move on” every day. I will never be able to just put it all behind me – for many reasons. Thanks for all your support. I appreciate it and I know Beth does too.

  11. You hit the nail on the head! Great article! Thank you, now I know my feelings are “normal!”

  12. nancy, it’s as if you read my mind. as a survivor i feel like i should be feeling something else and no one understands. you said everything perfectly. thank you.

  13. I think I have a heavy case of survivor guilt, b/c I had an “easy” diagnosis, and every single story I read, the woman has a wwwaaaaayy harder, uphill climb than I ever will (I hope. I am only 6 mos out.) How do they do it. And then there’s me, whimpering and whining as much as the next girl, the ones with stage 4, multiple cases, repeat diagnoses, positively ragged complications. It’s all hard. My heart simply bleeds unendingly for these women, a trickle of sorrow that just doesn’t coagulate and heal up.
    I am a very curious person and love learning new stuff, “home-schooling” myself, teaching myself new skills and/or learning from others. Of course I know nothing about cancer and it’s treatment and after effects, but when I ask questions, I am evidently perceived as “arguing,” “over-thinking” and “super anxious.” So I swear I will sew my lips shut and not utter one single question at the next appt. I have felt so under-honored and misunderstood in my curiosity. And yet I’m supposed to “take an active role in my health care management.” Talk about “stifling my expression” (as one commenter above mentioned). I tell myself not to care what the doctor thinks of me, but I do wish to at least be understood.
    I keep waiting for the “silver lining,” “God’s glory to manifest through my suffering,” the Phoenix to rise from the ashes. No wonder I’m so exhausted and broken. Waiting is hard work. Sometimes I think I don’t even want to leave the pity party, I’ll just wallow here forever. Is it true we’ll know when we’re ready to move on? Or up? Or through? Or sideways?

  14. To put it another way, Pinterest is eager to inform me that “It (name your enemy) can make you Bitter, or Better. It is your Choice.” While I certainly do not think I am CHOOSING to be bitter, I think I am. (A/k/a inner snark). And while I would love to be BETTER, I cannot find the wherewithal inside me to proactively make that choice. I ponder why I cannot make this choice. I tell myself I might be rushing it, this has been a traumatic experience, give myself at least a year to grieve (more new concepts to embrace). I tell myself to stop comparing myself to others. I say everyone goes at their own pace. There is no wrong way of handling it. Still . . .the bitterness is a tiny poison, yet another side effect of the condition, niggling its way through my bloodstream throughout the days . . .wearying myself as well as my loved ones and friends trying to support me. Will any of us have the fortitude to stick around long enough to see improvement.

  15. My opinion is KEEP IT SIMPLE! If what you’re doing works for you keep doing it. If it isn’t working, try something else. People can overthink problems, especially when the experience is so traumatic. Also, it makes me sad that someone would think they are surviving a/k/a living their lives the “wrong” way. We didn’t deserve cancer, we don’t deserve to be here any more or any less than those who have died from the disease, or anyone who never had it. We are all as different as the stars despite the common bond of cancer.

    My sister died of breast cancer last year. She chose not to do chemo & surgery etc. It was metastasized & facing that pain & chemo effects was not the way she wanted to spend her last year. She was not wrong. She “survived” for a long time despite the suffering. She didn’t choose cancer. When she was diagnosed she chose how to live out the rest of her life. Doing what she did is radical I guess. The doctors did not approve. At the end she chose hospice. She did it her way as they say. And I respect her for that.

    I was diagnosed with breast cancer a few months after her death. It was still localized & did not spread. I chose surgery & did the recommended radiation & taking Tamoxifen. Here I am and she isn’t. Don’t know why & pointless to wonder.

    I see other people struck by even worse tragedies & decide that I got this -with help from family, God as I understand Him & counselor. I am “healthy” I guess no other major health problems- I can walk talk think work etc. The cancer is gone for now, maybe not forever, but I choose to act as if it will be forever unless/until I’m told otherwise.

    Didn’t plan to ramble on like this. Hope it helps somebody, I think it helped me.

  16. PS: Don’t want to give the impression that any of this has been easy. The past 6 moths has been a rollercoaster ride of emotions- mostly anger, fear depression. Couldn’t get out of bed some days or just drove to radiation & slept rest of day. Was off work for months, mostly unpaid. I support myself-no husband or boyfriend to carry the load. I am blessed to be able to be back at work, physically & mentally capable. I try to watch comedies. [Highly recommend new Tuesday show in ABC called “Downward Dog!”] And I can laugh out loud sometimes. I want to give a little hope. Joyful moments have happened despite all of this. Unlike my sister, I have another day. I do talk to her still.

    1. Renee, Nothing about cancer is ever easy. Glad you and your sister still talk. Again, I’m sorry for your loss. Thank you for your additional thoughts and for the TV show recommendation, too.

  17. Perfectly timed post as I am going for my 6-month bilateral mammogram tomorrow, and seeing the breast surgeon next week. Cancer anniversaries, indeed. I keep a list. Thank you for this post. I guess I am wallowing through survivorship (4 years now since treatment ended). I find my patience running out. I’ve had several other health scares, risks, and each time I get angrier about the constant doctor visits, the ineptness of office staff, the blatant disregard of even considering what all these medications, inserts, and therapies do to the human body. I know, I know, I know: it’s to help me stay around. But I tire of it and sometimes it feels like I’m going day to day through thick gravy, trying to find my way.

  18. I love your blog on cancer surviving.
    I was originally diagnosed in 2006 – and I smiled at my family, friends and doctor – while I whined online and in a journal. I found it a hard and lonely time – expected to just treat cancer as a mild illness and be positive all the time.
    I nearly got kicked off one breast cancer support time for disagreeing with the, God so loves me he gave me cancer – it’s made me a better person brigade. Sorry if I offend anyone but i really can’t believe a higher power would take such an interest in me to make this happen. No getting cancer was just bad luck. Nothing else.
    2012 the cancer was back, I became paralysed from the breasts down and was told I would never walk again and would spend the rest of my life, about 2 years, in my bedroom. I got lucky walk not far and not fast but I walk..
    I can deal with stage 4 cancer much better – the road has a map – well sort off. it did take a couple of years for me to stop being bitter at what I’d lost – my job, my hobby, line dancing and a whole lot of people I counted as friends. I can’t think of anything I’ve gained – every time I get close to other stage 4 women they die. I’ve stopped trying to make friends – why bother either you’ll die and leave them grieving or they leave you grieving. Don’t get me wrong I do enjoy my family and pets and only one comment really makes the hackles rise.
    It’s your such an inspiration, I don’t know how you can live with so much wrong with you. I wish I was as strong as you but I know I couldn’t live with cancer.
    I’m no ones-inspiration, I’m living the life I have, enjoying everything I can.
    Try telling them that they to would do the best they could to live and find joy – and you’ll get a look that says – poor soul, cancer has affected her brain or she is lying.
    They could have a point as I often find others an inspiration. People who manage to live life to the full, those who struggle on working to keep a roof over their heads. Young women who should have years to have or to bring up their children but still keep going. Those who fall down but get up again and again – those ate the people I admire and find to be inspirational.

    1. Gloria, Thank you for your candid response. You certainly have had and still have a lot to deal with. My best to you as you carry on. Be you. Be real. It’s enough.

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