The Line

I, and many others, have often spoken of the fears that haunt cancer patients upon completion of treatment. Every little ache, twinge, hangnails even, can induce great fear in a cancer patient: “Is this a sign? Is this cancer coming back?”

For the most part, I’ve been capable of knowing when something is just a normal issue, not a signal that cancer has come back. The first time I had a little 24-hour flu after cancer, for example. It was weird, to have such a normal episode of nausea and vomiting not related to chemo. (Unluckily for me, this episode happened right after having a large Thanksgiving dinner—geez, of all the lousy times to get sick…) I know when I’m having allergy problems rather than a cold; I know that even though I’d never had a UTI prior to last fall, I knew it was a simple thing. I felt pretty secure that none of these minor illnesses signaled the return of cancer.

In short, I’ve remained on this side of my imaginary line that divides normal illness or signs of aging versus abnormal symptoms that indicate I need an oncologist. That is not to say I am or ever will be “over cancer”, I know the risks, the likelihood of recurrence and that I am not “all better”—unlike those folks who like to tell about their friend of a friend who had a little cancer that one time and now she’s “all better”.

But I have lost sight of the line lately. Or maybe I keep jumping back and forth over it, or I’m straddling it.

When I had my suspicious mammogram last March, I found myself back in that place of cancer terror, the place I occupied upon diagnosis. I had a brief reprieve after the MRI proved the suspicious area to be scar tissue and not a tumor. I breathed easy, thinking I’d dodged a bullet this time. But every health blip I’ve had since then has sent me over the edge—especially since it all seems ongoing and whack-a-mole; each time a symptom is quashed, a new one pops up.  All remains unresolved.

Given my history of medical professionals misdiagnosing me (my first mammo was all clear when really I had a giant cancerous tumor; I was told I had shingles when really I had a staph infection), it is hard for me to trust my GP when she tells me stress has made my muscles contract to simple muscle spasms causing my limb/finger/toe numbness. How do I know it is not something more sinister? If not cancer, perhaps something just as serious and catastrophic?

How do I know or trust that that my issues are not something more serious? I’ve lost sight of the line—the line that says trust the doctor that it this problem is not serious versus advocate, push, ask for tests that prove my worst fears.

I’ve been living in that dark hole of fear and terror lately. I’ve not been communicating or writing much, I just cannot focus when my mind is busy contemplating the horrible possibilities. I don’t like being in this place. I thought I had my post-treatment blues, my walking-with-fear-of-cancer’s-return in hand. But I do not.

So back to the drawing board. Back to counseling. I’m angry at myself that I took one step forward and have now taken several steps back.

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Author: Cancer Curmudgeon

Oct 2010 diagnosed with Stage 3, HER2+ Breast Cancer. Completed treatment Jan 2012. Waaaaaay over pink. Applying punk rock sensibility to how I do cancer.

25 thoughts on “The Line”

  1. I hear you on this. I’ve been extra anxious this month over a tender spot on my back that developed a couple months ago. It doesn’t fit the criteria of “things to worry about” but my mind doesn’t want to let it go. And then someone pointed out that I’m at my 5-year anniversary this month, and though my logical mind knows what that does or doesn’t mean, my emotional mind is keyed up because of the “anniversary.” I’m also told that PTSD is not just for soldiers, that a serious illness can produce some of the same symptoms of PTSD, and that it’s very hard to get the emotional reaction to perceived threats (real or otherwise) back down to the level it was before. I don’t know if this info helps you, but it did make me feel a bit more normal.

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    1. Oh yes, I’ve certainly been told in support sessions that having cancer produce PTSD. While I generally dislike the battle/military language in cancer, as in “so and so lost their battle to cancer” so often seen in celebrity obits, I am re-thinking the comparison. Perhaps fodder for another post another day.
      Thanks for reaching out!

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  2. Wow how did you get in my head and write what I have been thinking for two years. I am stuck in that horrible place of fear… I just can’t get passed it. I go to a support group but it doesn’t help. Some times it makes it worse. If you find something that helps please share it.

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    1. If I do figure it out, I will share! Up until now, writing it out on this blog has done the trick–but all the additional health issues have just overwhelmed me lately–not only do I fear cancer, but practically any major illness or anything! So I just hope to get it under some bit of control. Will keep posted!

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  3. 33 years out after my first cancer diagnosis, I can still go back to the hell place every once in a while. I learned the balance over time. But then I was proved wrong with a second diagnosis 7 years ago. And to this day, it still can happen. I had a mammogram this week and did not stick around to find out the results. They will call if I need to go back or send a letter in 10 days telling me its all clear. I am just avoiding the thought for now. It just took years of me learning to put cancer in the back of my mind and letting it come back out sometimes but not constantly.

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    1. “Proved wrong”–you nailed it. It’s like, of course we have something to fear–something horrible can and did happen. Like positive reinforcement for bad habits. That might be the key for me in overcoming this, hopefully. Thanks for the spark to ponder!

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  4. Its a conundrum CC and I’m confused as to the answer. If we don’t remain vigilant we might miss a sign. If we’re vigilant we can never forget that cancer happened. Maybe it is about balance, knowing the 24 hour flus and simple muscle aches from anything more sinister but in reality how can we tell? You’re not alone in straddling the line and if there was an easy answer it would be all over the web and support groups. It isn’t which suggests to me that it’s a much more challenging issue than standard medicine deals with.

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    1. Ha ha, yeah it would be all over the internet, I guess. Finding balance is hard enough, but finding it with cancer on the ones side, weighing things down, it just makes balance a harder challenge. But it is good to know that this is something that so many of us deal with. Thanks!

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  5. Hi,

    It’s so good to hear something from you and I’m very glad there are no bad news in terms of physical health.

    This is so familiar… After cancer diagnosis I had a year where several types of diagnostics were run for other health issues/symptoms. Every single time I went to a doctor, I thought only about worst case scenarios, horrible diseases, return of cancer, etc, I had such a hard time trusting anyone, also because of several cases of misdiagnosis earlier.

    I really do think all this is normal, part of PTSD, and so many of us have trouble with the balance between vigilance and paranoia. What helps me practically is getting a second opinion if I’m particularly stressed out, making sure I obsessively note any and all symptoms and tell them all to the doctors or even give them out in a written form — this is how I regain some psychological control. On the other hand, I don’t think this balancing act will ever completely disappear, this is my new normal. I do hope, though, that for all of us flares of fear and paranoia will become much rarer and lighter.

    I hope counseling helps:) It seems like it definitely won’t be harmful and maybe you can stop being angry at yourself?

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    1. Hey Zimball glad you found me over here (tooyoungtobethisold.tumblr & anotheronewiththecancer.tumblr). I think I’d been a bit less active on all fronts.

      Yes, I also obsessively note symptoms–partly because I always think I’ll forget to mention something when I get in to see the doctor. And yes, although all seems well according to my GP, I am certainly having all her notes about my numerous visits sent over to my onco–just so he can give me his take.

      And you are right, it is silly to be angry at myself–my nature is to get things done, check items off a list, so having to revisit this issue when I thought I had a handle on it is just irksome. So I’ll hopefully learn to get over that as well.

      I haven’t forgotten our conversation last month about showing mastectomy scars and still plan to finish my post on it, now that I am feeling a little better! Thanks again for the push.

      Thanks for everything–so glad we’ve connected.

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  6. Hi Wendi,
    I think this is just the way life is post diagnosis. Some days we take that step, or even a leap forward and then wham, the next day we are heading in the opposite direction. The balancing thing is tricky. I like your idea of the line – hadn’t really thought about it in quite that way before. Don’t beat yourself up for taking those steps back, or for any of it. You’re doing the best you can and it’s understandable based on your experience that you sometimes have trouble trusting what the medical people are saying. Cancer does a real number on our body and on our psyche too. Counseling is probably a great idea. I hope you keep writing about how you ‘walk that line’ because it’s really helpful to many of us.

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    1. As always Nancy, your words of encouragement keep me going. I do plan to keep writing as much as I can. Just finding that not feeling well tends to make me tired and less able to write especially on days when I am busy with work. But you nailed it–I am motivated to do so because I think about talking about all of the aspects of the cancer experience, even this one I’m finding so unpleasant, is important to discuss. So many things that have happened to me in all of this have been the exact opposite of what I expected or believed to be the cancer experience. So the exchange of stories and information via social media is crucial, and I become more aware of that each day.

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  7. I just went through a very similar phase and finally got through to the other side. LIfe post breast cancer isn’t ever going to be the same as it was before. I know that I, for one, will always be worried about a recurrence but perhaps your honesty in the post will maybe help you get the thoughts out of your head and onto a page so that you can let them go. I am a big supporter of counseling and hope that it helps you wrap your head around the fear in a way that allows you to live more freely. I’ll be rooting for you! And keep writing, it’s a great outlet and will help others in a similar experience. Hugs.

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  8. Yes it’s a tough line to walk on. I have metastatic breast cancer, stable they tell me. I worry about crying wolf and losing credibility with docs, but then I also mistrust a reliance on tests as the only indicator that something is wrong. All that being said I really believe that I DO know deep down when something is off and when I get that stuck in my craw I keep pushing the docs to prove me wrong. I think it is a matter of self trust too. I wish you peace and the courage to push these fears back and focus on making the most of each day, and forgiving yourself when you fall from this lofty goal… It’s called being human…

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    1. Crying wolf–what a great way to put it! Yes, that is what keeps me from going to the doc in the first place, and then when I finally get there, I’m in distress physically and mentally. Bad habit. Thanks for reading and your encouragement. Best wishes to you as well.

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  9. I wonder if I’ll ever get ahold of “the fear” as I call it. Five years out & I still flip out over every single ache,pain, even a pimple. Hang in there & sure hope you will feel better soon & finally get to the bottom of things. xx

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  10. I was visiting my regular doc a few weeks ago for a totally non-cancer thingy and I asked her a few cancer questions. Right before I left, she said, “you know there will come a day when your every thought won’t be about cancer. I promise you that. I will eventually be all behind you” I sure hope she is right. Because my thoughts mirror yours right now.

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    1. I think once a major health issue happens, a person will likely always feel vulnerable to any and all future health scares–I mean cancer is certainly the first thing I think of, but lately, I’ve found myself fearing all sorts of illness. Right now, I’d just settle for feeling better!

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  11. I’m back-tracking through your blog because I’ve been dealing with health issues over here – a dog going blind and incontinent, a husband who was hospitalized for sepsis and then my stupid eyeball decided to have an uncommon problem requiring surgery.

    But, I’m back now and now for my comment on what you’ve been going through.

    I think that what you’re expressing here isn’t something like “two steps backward”, these fears are like excess baggage that we carry with us as we go through this healing-from-cancer. It’s like every little fear gets stuffed away, ignored, until that place where we stuff those fears finally becomes over-filled and has nowhere to go so all our fears come spilling out! I think this is a typical part of what we are all going through or have gone through.

    Be kind to yourself so that your mind is in the right place and you can concentrate on your physical health.

    Only best wishes and happiness are sent your way!

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