The New Abnormal

Posted on: June 12th, 2015 by
22

Upon hearing that I am cancer-free thus far, people flippantly ask me if I’m now used to the “new me” or the “new normal.” I’m sure they mean well, but I really don’t know what they mean. They are tossing about meaningless phrases. I don’t like being typecast into nonsensical words like the “new me” and “new normal” because — even if cancer is not involved — a “normal” life does not exist.

Life is orchestrated chaos: if we are lucky, we get to control some of our circumstances. If we are lucky, we get to meet some goals and achieve a few dreams.

However, we shouldn’t get too complacent; life has a way of screwing it all up.

Throw cancer into the mix, for example. Post-cancer life, frankly, is not a new normal.

In fact, my cancer survivorship is the new abnormal.

I’m NED (no evidence of disease) thus far, and I am incredibly grateful for all the bountiful gifts life has to offer. Every day I’m reminded of how lucky I am: I appreciate my days of physical and mental health. I’m able to walk and swim, appreciate nature, read, write, and create art. I have a terrific, supportive network of friends and a wonderful daughter to share my life with.

But I will not forgive cancer for changing my orchestrated chaos to the new abnormal.

It was abnormal, for instance, to have chemicals pumped into my body. And to have chemotherapy-induced menopause. And to have my breasts amputated and replaced by make-believe breasts. And to have osteopenia at a young age, as well as bone fractures due to all the treatments.

And for me to have PTSD. And for insurance companies to cover PTSD treatments for military personnel, but not cover them for someone who has experienced something just as frightening as going to war and facing death. (Pardon the war analogy, but in this case it fits.)

As I write this, it is 12:30 a.m. It’s not normal to be up so late panicking because it is nighttime, and the darkness reminds me of death and cancer demons and ICU. That’s when my PTSD is at its worst: at night. Why, oh why, aren’t the anti-anxiety medications kicking in yet? I take them to minimize the flashbacks and anxiety related to my cancer experience.

Frankly, cancer has flattened me good.

In all the brochures and pamphlets I read as a newly diagnosed patient, there was no information on how to survive after cancer — if one was lucky enough to be finished with cancer treatment. Why is this?

When I finished radiation, I got a certificate of “graduation” and applause and was sent on my way. When I finished chemotherapy, my chemo nurse celebrated, as did my family and friends. Everybody was happy I was “done” with cancer and would return to normal.

But cancer wasn’t “done” with me. I would never be the same again. After I was given the all-clear to get on with the rest of my life, I found myself gasping and struggling and in anguish. I remember my first post-treatment commute to work, the beginning of my introduction to civilian life. I looked at my reflection in the train car window, and all I could think of were, “What the hell just happened to me?” and “Who the hell am I?”

This is the world of the new abnormal.

My family loves me; they don’t want to see me suffer. Some of them know I have PTSD, but they don’t bring it up. You know, the mental health stigma. When I was getting treatment for cancer, they did want to know how I was faring. But they don’t ask how I am faring now. So I’ve since stopped talking about it with them.

I get it: They need to believe that I’m over cancer. But I will never be over it.

I’m happy to say that I am successfully navigating survivorship in the new abnormal, but some days I just lack the energy to cope as well as I can. Survivorship takes a lot of raw mental, emotional, and physical energy. Some days you have it, and some days you don’t.

All I can do is take great care of myself and my child. And pick up the pieces, even though they can’t be put back together.

Clouds

How have you dealt with survivorship physically and/or emotionally?

Did a medical/social service professional discuss a survivorship plan?

These questions also apply to those with metastatic disease.

Please share your experiences. I would love to hear about them.


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22 Responses to The New Abnormal

  1. Caroline had this to say about that:

    I live in the abnormal as well. I see a meds therapist who gives me medication to let me sleep. Otherwise, I would be up all night fighting the ‘what ifs’. My husband does get it as he had his own cancer scare a few years back. The rest of my family is clueless about the concept of a new normal. They don’t get it.

    • Beth L. Gainer had this to say about that:

      Caroline,

      I’m sorry you are in the world of the abnormal, too. Ah, the what-ifs; they are enough to drive one out of his/her mind. I think it’s common for family and friends to not completely get it once one is “done” with cancer. They often expect the patient to just go back to life and go on as if nothing happened.

      I’m glad your husband is so supportive. Wonderful.

  2. Becky had this to say about that:

    My husband sent me this last night: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

    I think it does an interesting job of explaining how I might look healthy but there is so much going on that and I only have limited energy to give. I find myself wishing for the stamina that I had before treatment .. I want my energy back … but alas, the road to recovery is a slow one ….

    • Beth L. Gainer had this to say about that:

      Becky, I will have to check out the link.

      I know what you’re saying about a lack of energy and stamina. I occasionally long for my pre-cancer self, which was highly energetic, but it’s not to be I guess.

      And your point about looking healthy but there being underlying problems is well-taken.

      Be patient with yourself and just cope as best you can with this slow road to recovery. Easier said than done, I know.

  3. Kathi had this to say about that:

    Oy, Beth. Is this ever true! I keep waiting to get back some of the stamina and light-hearted insouciance I used to possess. But when I take a hard look at my reality, it seems that my energy and resolve is taken up instead with constantly adjusting to what I’ve lost. I wish you weren’t plagued by PTSD, too. But we all know that most of us are, to one degree or another. We know too much not to be. I said to someone else recently that I feel like I’m always walking this line between grief and gratitude, grief for all I’ve lost, including friends who have died of cancer, and gratitude for what I still have, which I hang onto as well as I can. Much love to you, Kathi

    • Beth L. Gainer had this to say about that:

      Kathi,

      I’m sorry that you are so fatigued and low on energy — all because of cancer. You make a good point: all of us suffer some level of PTSD to some extent; how could we not?

      You describe cancer survivorship very well: smack dab between grief and gratitude. Like you, I’ve lost friends to cancer but am also glad to be alive.

      Kathi, all you can do is treasure and honor your friends’ memory by carrying them in your heart. Hugs to you.

  4. Scott Johnson had this to say about that:

    Thanks for this Beth. Even my cardiologist doesn’t get it. The other day in an unrelated conversation someone mentioned how doctors had to distance themselves to function with all the pain they see and it occurred to me that this could damage THEM as much as we can’t escape the “survivor” thing ourselves.

    In the cardiac ICU the first recovery was unpleasant but uneventful. Second time I had a week of ICU Psychosis and people who were there are very impatient that my actual memory prefers the weirdness invented by my mind and not the “actual events.”

    Strange how we go to school and are expected to hang on to what we have learned. That it’s normal and desirable to remember. Then we have a powerful experience and it’s judged unhealthy that it doesn’t go away:-(

    • Beth L. Gainer had this to say about that:

      Scott,

      I’m sure patients’ physical illnesses do get to doctors sometimes. I know that some doctors distance themselves from their seriously ill patients, and frankly I think that’s a shame.

      I’m sorry about your ICU experiences. I’ve been to ICU, and it was hell.

      Thank you for your insights; I always am glad to hear your perspective.

  5. Rebecca had this to say about that:

    Beth,

    This is an ongoing situation for most of us — how people simply refuse to accept that we are not the same after cancer and that we need just as much support after treatments are done, if not more.

    I always had trouble defining the word “normal.” It’s a complicated word. Who has the right definition for it really, when each situation is so unique and each person reacts to life circumstances so differently. I know there are different measures of what “normal” is according to society (and Psychologists have a way to tell us that in so many different ways). I’ve decided to be kind to myself and continue to call myself “normal,” because I would like to think that everything I feel is expected under the circumstances. I’ve reached a certain level of inner peace by thinking this way. Of course, I would rather have the life I had before cancer. Better yet, I want to be a child again. At some point I had to become an adult and that changed a lot in my world. Then came cancer.

    There was no survivorship plan for me but my hospital offers resources after cancer. This has helped a great deal.

    Thank you for sharing your perspective on this never-ending topic that affects so many of us.

    • Beth L. Gainer had this to say about that:

      Rebecca,

      I totally get wanting to be a child again. I long for the days where I was seemingly protected from all the suffering that takes place when one is diagnosed with a devastating illness.

      I like your perspective on your calling yourself “normal.” I’m so glad your hospital offered post-cancer resources. That really can make a difference in patients’ lives.

      Thank you so much for commenting.

  6. Tammy Walker had this to say about that:

    Love this post, why? Currently I feel like I am expereicnsing some short term memory loss due to lack of estrogen and tamoxifen. Along with discovering I have a cataract that may be related. Problem is making choices over treatment, I was explaining to a friend that I felt like I have been distracted since returning to work last NOV.It feels like life is not quite as vibrant as it used to be, sure I appreciate those wonderful moments and look for them often. Explaining this to people is difficult. And very hard for them to understand. I am leaning heavily on my Faith right now, and wonder if all the color will return in time.

    • Beth L. Gainer had this to say about that:

      Tammy,

      I totally understand why you have been distracted since re-entering the work force. And, yes, explaining how you feel to others can be frustrating, especially when they don’t understand what you are going through or cannot empathize.

      I’m sorry you have short-term memory loss. I’m hoping the color will return for you. Be patient with yourself; it may take awhile.

      Hugs.

  7. Cancer Curmudgeon had this to say about that:

    I chuckled when I first started reading–the new normal phrase does not both me the way so many other cancer cliches do–because my life was never normal, and is even less so now–and that is not only because of cancer.
    The rest of the issues addressed here–yep, the what the hell just happened feeling after treatment is over, the “aren’t you over it yet”…all too real for me as well.

    • Beth L. Gainer had this to say about that:

      Hi Cancer Curmudgeon,

      I think many, many people grapple with post-treatment shock and feelings of sadness, anxiety, and depression.

      Like you, my life never fit into the “normal” mold; this is why I don’t understand what “normal” really means. I think many people have not had what is considered by many to be “normal” lives.

      Thank you for your comment; I always appreciate your perspective.

  8. Elissa Malcohn had this to say about that:

    In a way, I’ve been primed for survivorship abnormalities (osteopenia here, too, and other SEs) almost all my life. First, my 18 years of severe dysmenorrhea made my chemo (AC-T) feel like a breeze in comparison. I write about those years (long read) at
    http://hurricanecountry.blogspot.com/2005/08/pot-of-painlessness-at-end-of-rainbow.html
    Second, I’ve been a caregiver since 2001, including through my own cancer treatment. (Going to chemo literally was a form of respite for me.) I’ll just say that I gave up on “normal,” “new normal,” whatever, a long, long time ago.

    Then there’s the car accident when I was 7: in critical condition for 2 weeks, in the hospital for 10, then on crutches for 4 months. I remember looking up at my mother as I lay in the street with 2 broken legs (the left a compound fracture) and intestines ripped open and almost a ruptured spleen, and telling her calmly that I was going to die.

    I’ve had a few years that felt wonderfully “normal,” that have been simply amazing gifts. Cancer and its treatment (currently with anastrazole) reinforces my “work-around mentality,” in which caregiving had already given me new skills on top of the ones I already had.

    I’m also lucky to have a fabulous facility whose LCSW sees patients according to need years after their active treatment has ended. She also helped me set up my support group, “Creativity Heals,” which I facilitate in addition to attending a BC support group at that center. I also attend a “Healthy Living” course that she co-teaches there. (A caregiver support group might start up there as well. I told her that if it did, I’d be there in a heartbeat.)

    For decades I’ve lived by my personal mantra, “Nothing is wasted.” To that I’ve added that even a bad day is a good day because I’m still on this side of the grass.

    • Beth L. Gainer had this to say about that:

      Elissa, I will have to read your post.

      My gosh, you’ve been through so much in your life. I know what it’s like to be a caregiver through treatment, and it is exceedingly difficult to do.

      I’m so glad you have support in place, and that you are taking advantage of all the wonderful services you have access to.

  9. Nancy's Point had this to say about that:

    Hi Beth,
    Some days I still feel pretty darn flattened by cancer. And then, of course, I feel guilty because I’m not metastatic. I don’t know why there isn’t more guidance offered for the survivorship phase of cancer. The new normal phrase is pretty meaningless to me too. Nothing about survivorship is normal-like, new or otherwise. And I hate that you must deal with PTSD, but you are helping others by talking about it. Thank you for another thought-provoking post. Hugs.

    • Beth L. Gainer had this to say about that:

      Thanks, Nancy, for your supportive comment. I also feel guilty because despite the ranting I do, I’m also not metastatic. Of course, not being metastatic is a good thing.

      Yes, you are right: nothing about surviving cancer (or any disease for that matter) is normal. I appreciate your empathy regarding my PTSD situation, but the more I talk about it, the more I accept it as a part of me deep down inside.

      I’m lucky I have a tremendous support system in place; this help lessen the symptoms of PTSD.

      Thank you for commenting. I always appreciate your insights.

  10. Steffanie Balog had this to say about that:

    Thank you for your blog and posts and sharing. It is comforting to know I am not the only one with a new abnormal. I’ve found many of your posts speak about my experiences too. Thank you for your honesty. I wish you peace and less pain as I too with this for myself. Yes I am NED but no I do not have my life back from before. No my doctors cannot do anything for the pain from the DIEP Flap and I too try to keep up with the exercise and relaxation techniques. Too many restless nights and painful days to speak of and yes I get crabby! And yes, no one truly understands and it all just kinda makes me sad sometimes. Again – thank you for sharing, it really helps me to know that you understand where so many of us are with this new abnormal! All the best, Steffanie

    • Beth L. Gainer had this to say about that:

      Hi Steffanie,

      Thank you for reading my blog posts and leaving your comment here. No, you are not alone. The cancer experience has a way of really messing with us physically and psychologically. And what’s done to us can’t be undone, it seems.

      Have you received physical therapy for the DIEP pain? I had to have physical therapy twice for the pain, and the physical therapy did help. I’ll always have pain, but it’s not as severe as it was.

      It’s understandable why you get crabby. I do too. Remember, you are not alone.

      • Steffanie Balog had this to say about that:

        Thank you Beth – yes two x 12 session PT and it really helped. Gosh if I had to do it all over again – not sure I would do the DIEP, but hey I am alive and happy. That’s important too. Thanks for the blog – it is a great service for so many of us. I’ve read it for a while and only posted now. Steffanie

        • Beth L. Gainer had this to say about that:

          Steffanie, I’m glad you had PT and that it helped. You’re right: it’s important to be alive and happy. I think any choice we would’ve made in terms of surgery would have negative repercussions. Surgery is no walk in the park, as we both painfully know.

          I so appreciate your readership and leaving me a comment. I look forward to any comments you might leave in the future.

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