Cancer Fallout

Posted on: April 12th, 2012 by
28

For those Desperate Housewives fans, a storyline a few years ago featured one of the main characters, Lynette, having cancer. I cried watching her deal with diagnosis and go through chemotherapy.

However, when her treatment ended, so did the cancer storyline. 

She was not only “cured,” but she had no physical and psychological effects from the devastating disease and treatments. And guess what? Her husband and children put the cancer behind them, too. Cancer was so over, that it was time to move on to other plot lines of dysfunctional proportions. 

We in the cancer world know better. We know that cancer — whatever the outcome — affects us for the rest of our lives. Like a nuclear fallout, the fallout from having cancer is huge. Storylines like that of the Desperate Housewives post-cancer episodes do the public a disservice: they teach us that if we are lucky enough to have the status of “cancer survivor,” then cancer should be eradicated from our history. 

Someone once told me that I had to “get over” this thing (meaning the cancer), as it was in the past. Other people told me how lucky I was to have breast cancer, the “good cancer.”

What loads of sh*t.

To this day, people admire me for “beating” cancer.

Truth is, breast cancer has beaten me up pretty badly.

OK, it’s a given that diagnosis and treatment were hell, so I’m fast-forwarding to what my “post-cancer” life is like. Overall, I am grateful to have survived thus far, and I enjoy each day, or try to, because I know how fragile life can be — and I know how close I was to losing my life. 

However — not to sound ungrateful here — my cancer treatments set off a chain of events: side effects such as significant bone loss, terrible abdominal and back pain from DIEP flap surgery, chemobrain, fears of recurrence — especially when I have aches and pains, as well as psychological lows and flashbacks. And then there’s that pang of fear that strikes me each time I have a follow-up with a doctor. 

But I’m just expected to “get over cancer” because it’s in the past. 

Huh? 

Why do people feel the need to sweep these experiences under the ever-so-tidy carpet of denial? Maybe it’s because they want to live in a land where we all live in gingerbread houses.

Well even gingerbread houses rot.

Having cancer is like being on a doomed train. If the first car derails, there are repercussions for the other cars. 

In the meantime, I will ignore the “get over it” and “it’s in the past” comments and go on with what’s left of my life. We only get one life on Earth, so it’s our duty to live it to the best of our abilities.

For another post on the effect of a cancer diagnosis and subsequent treatment, see Nancy Stordahl’s excellent post, Cancer and the Domino Effect

What are your cancer fallout experiences? Has anyone tried to minimize your cancer experience? All rants are welcome.


28 Responses to Cancer Fallout

  1. Andy Koehn had this to say about that:

    Hi Beth…

    I’m not a survivor…and neither was my wife. I have since remarried and love, love my wife more than anyone can know. It’s an awkward existence sometimes because of the death that allowed me and Jenn to meet and fall in love. THAT is a strange fallout I didn’t fully anticipate…and feel protective of Jenn because of it.

    There is fallout everywhere and almost every day. It is on my kids…me…and now Jenn and my new stepdaughter. They have to deal with it too.

    Like you I get a little miffed as people who have not been a real part of the experience minimize the impact an illness and death can have on the people involved. “Sweep it under the carpet…” Yes. (Unless they feel like talking about it. Then it’s right out there in the open…whether you’re in the mood to talk about it or not.)

    My way of dealing was to start my blog because I suffered…and to some extent still do…because the lessons I learned will never leave me. Most can’t understand those lessons…and I’ve about given up trying to justify some of my actions and ways of living. (Do you ever find yourself explaining your POV on certain things? They get dismissed pretty often, huh?)

    I love your style of writing and I’ll be reading more. I have to be in the right mood though…because sometimes it brings me down.

    Thanks for this. The candid approach is great. (Though I suspect some people will tell you to cool it a little…and get over it.)

    Stay cool…

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

      Hi Andy,

      Your comment is so poignant. First of all, I’m so sorry for your loss. But I am so happy you found love again. You have really been through a lot, and cancer’s repercussions are felt forever and among loved ones. Yes, our POVs get dismissed really often because people don’t want to deal with the mess of cancer.

      Thank you for your kind comments about my writing. I’m so glad you will be reading more of my writings.

      And I will take your advice and stay cool. Thank you!

  2. Rica had this to say about that:

    I don’t know that I entirely agree with that. It does come up in conversation. Her personality did change. She became a more jaded, more aggressive, less tolerant of Tom. Something has been off. Dare I wonder if it also affected her self-esteem? She seems older than she did before – and not just because the show jumped a couple of years. I mean she seems OLDER.

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

      Rica,

      Thank you for reading and commenting. Your interpretation of Lynette’s character could be on the mark. She definitely seems older. I happen to love the show, but I did think her cancer experience got glossed over, especially when she didn’t lose her fertility after chemotherapy. But then again, not everybody does, huh?

      Anyway, my post’s point is really about society glossing over all the repercussions that cancer causes, and that there’s a chain reaction from diagnosis to treatment.

  3. AnneMarie had this to say about that:

    Beth,
    You KNOW my feelings about this and I’m laughing at:
    “Has anyone tried to minimize……”
    How about almost EVERYONE??? …. Except those of you who “get it.”
    I am not an ingrate. I realize I am fortunate having only lost my brain and thus, my ability to remain in a career for which I am—wait, WAS— was qualified. I’ve been bouncing along just fine, driving myself up the wall because I was buying into the good cancer, the mild chemo, the everything for a reason and all of the other happy horseshit that’s been crammed down my throat. And then I stopped bouncing. And I started ranting. All I can say is that I’m sitting here nodding at the screen…. Really, I’m shouting, “YES… yes… Y.E.S.” ….. This is fabulous…. Now I have to go read Nancy’s post. I missed it. I miss MUCH thanks to my messy and disorganized “New Normal” …. Shall we have a conversation about that one next?
    xoxox

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

      Yes, the “Has anyone tried to minimize….” question is a gimme for sure, AnneMarie. I find these words haunting: “I am fortunate having only lost my brain…” It’s a huge deal, this chemobrain, as you and I both know all too well.

      Even though it’s not as bad as death, chemobrain is a steep price to pay. And there’s no such thing as mild chemo. It’s all toxic crap flowing in our veins.

      I’ve gotten to the same point as you in terms of being angry about all the crap that’s handed to us, such as the good cancer, and how I am so special to be a cancer messiah, that I was that special person chosen to help others with my words. That’s going to be a future blog, now that I think of it.

      I love your rants, AnneMarie. As long as there is injustice — and there always will be — your rants will always be needed.

      Yes, sometime we will have to discuss the “New Normal.” That’s also a hot button for me.

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

      Oh, and I forgot to say in my reply to you that Nancy’s domino-effect posting is terrific. I’m glad you are checking it out!

  4. HappyGromitLA had this to say about that:

    Hi, Beth — I’ve been reading the ongoing discussion on misguided-to-hurtful comments, and the topic is especially on my mind, having had a bizarre experience of my own just this past week with a (probably former) good friend. I think a lot of the comments one hears are meant to be helpful or positive, but my own recent experience made me realize that some of these comments, I think, come from a place of anger. Not anger at the person with cancer directly, but at the friend or family member’s being confronted in a very visible way that life doesn’t come in a neat little box. I think a lot of people have rigid ideas about how illness comes about and believe that if you just lead a “healthy lifestyle”, everything will be peachy-keeno. Unfortunately, that’s not the case. Although, understanding that rude and hostile remarks may come from fear and anger doesn’t really make it any easier to stomach.

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

      HappyGromitLA:

      Thank you for your comment. You are so right about many people having rigid ideas of how to avoid illness. These people like to believe that we have total control over our own destiny, which is a fallacy. Nobody is entirely in control of his/her own destiny.

      In terms of your friend, I’m not sure what her/his comment was, but maybe it might be worth it, if you haven’t done so already, to address this comment and tell her/him how it affected you. It may salvage your friendship, or you may find that this friendship is indeed over.

      I wish the best for you and thank you for reading my posting.

    • HappyGromitLA had this to say about that:

      Beth, thank you for your response and for your input. Also, sorry that I forgot to sign my name–I get mixed up on what I’m “signing in” as. I’ve actually written what my friend told me on some other blogs and I know you guys all read each other, so I didn’t quote it yet again because I didn’t want to seem like some sort of drama queen. But I am thinking that I should give her some sort of response. I really get a lot from both your blog and your comments on Pink Ribbon Blues, Accidental Amazon, etc.

      Best, Sandra

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

      Hi Sandra,

      No problem at all. I’m sure that somehow somewhere I saw your comments. And I’m sure you are no drama queen when dealing with hurtful/insensitive comments. Thank you for your loyal readership and your kind words about my blog and comments.

      We are a strong community who supports each other.

  5. Julie Goodale had this to say about that:

    I kind of like it when a colleague will say, “oh my god, that’s right, I had completely forgotten you went through that…I’m sorry, I just don’t think of you that way.”

    But the other comments are tough, even if I know they’re not meant with ill-intent. When I was getting ready to go to Africa with a group of cancer survivors & caregivers, a friend asked why I was doing that. “That’s all behind you.”

    No, it’s not. Not for any of us. We don’t experience it in the same way, but we still experience it – every day.

    And I HATE cancer depictions on TV/film!!! The girl is always beautiful as she’s dying, kind in spite of her fear & pain, stoic as her loved ones cry. And when she dies – because she either dies or she lives & never has to think about it again – there’s always heart-tugging stupid music.

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

      Julie,

      The whole “That’s all behind you” remark is really insensitive. I totally get it. And yes, I also HATE all the cancer depictions in movies and on TV. The person who succumbs to a disease is depicted as the noble sufferer and she often looks beautiful in her own demise. It really is sickening, and the music is also stupid. You are right!

      Thank you for commenting!

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

    I watched that season when Lynette had her cancer. That was way before my diagnosis, but I thought it was strange even then how her cancer got tucked away so neatly in the past.

    Cancer fallout, well it continues for a long time doesn’t it? I don’t think it’s ever over and that’s exactly why it’s so irritating when we’re expected to “just get over it.” If only…

    Thanks for writing so honestly. And thanks for mentioning my post.

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

      Hi Nancy,

      Thanks for your comment. Yes, cancer fallout certainly does endure. I get so incensed when people tell me “to get over it,” or “that part of your life is over.” Cancer has made my life what it is today — for better or for worse.

      Truth is, I love Desperate Housewives, but I did think that the show glossed over the cancer aftermath. Then again, if the focus was on Lynette’s constant worry about recurrence, there wouldn’t be a show.

  7. Alli had this to say about that:

    This makes me sad bringing up not so great memories. My family has been dismissive right from the start. Get over it, It’s not all that serious, they caught it in time, are you trying to get to get sympathy ?? You should have looked after your health better. Stage 3 is not a big deal. If it was that bad you’d look sick. Can you blame me for not talking to my family?
    Love Alli…..

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

    Hi Alli,

    I’m sorry about your family’s dismissiveness. It sounds like they do not want to confront the pain you are in and that they are in a state of serious denial. And those “should have” comments are infuriating! I can’t blame you for feeling the way you do. Believe it or not, I can relate. Some of my family members couldn’t handle the pain, so there were some callous remarks and some callous actions. However, in my case, I forgave them and I understand that it is their weakness, not mine, that they couldn’t cope with my diagnosis and treatment.

    At the same time, I know those family members felt the pain of seeing me go through hell, but they couldn’t express it. So sad, really.

  9. The Accidental Amazon had this to say about that:

    Well, Beth, since we’re old cybermates now, I’m sure you know where I’m coming from on this topic!! Some of the comments here are so poignant, especially Andy’s. Wow, Andy, I’m so glad you found Jenn, but what a burden & legacy you and your family carry every day. It’s so complex — and great that you blog about it. And your comment really brings up how much the fallout effects those who are close to those of us who’ve endured cancer, who have to watch and fear and hold their breath. Sometimes, I think that’s almost worse.

    It’s such a weird thing now, having anyone ask me a simple ‘How are you?’ in everyday conversation. I find myself having to making all these decisions about how to answer in a few seconds — depending on who’s asking, how they’ve responded before, what sort of mood I’m in, what kind of mood they seem to be in, where we are, whether I even feel like being honest or whether I just don’t even want to bother talking about it at all. How’s THAT for weird fallout, huh? I wonder if we ever get to the point when someone can ask us how we are, and our cancer experience isn’t the first thing that comes into our heads.

    The aftermath never ends. Great subject, Beth.
    xoxo, Kathi

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

      Kathi, yes we are old blogging buddies by now, and yes it is difficult to answer the “how are you” questions. I think so many people just want to hear “fine,” which is what I usually answer with. But we cancer peeps know the truth: we are far from fine emotionally and/or physically.

      I agree that I’ve gotten quite a number of poignant comments. Amazing. Andy’s story is, indeed, quite compelling. I cannot imagine all the repercussions that cancer has caused. I really admire him and his family.

      Thanks for your comment, Kathi!

  10. Anne had this to say about that:

    Hi Beth,

    Just wanted to say that this struck a whole load of chords with me. At first my husband (who was a tower of strength during my treatment) couldn’t understand why I wanted to be involved with a breast cancer support group, he certainly wanted me to put it all behind me and move on. I’m glad to say that he now supports me totally and accompanies me to advocacy & fund-raising events whenever he can.

    BTW, I love it that you call yourself a breast cancer thriver rather than a survivor – and despite having been badly beaten up by cancer, as you put it!

    Keep it up!

  11. Jan Baird Hasak had this to say about that:

    Beth, from all the comments I see you’ve struck a nerve. And I’m glad you did.

    Like you, I’ve been told my cancer was the “good” kind. (Uh, could you repeat that? Do you know what you are saying?)

    I’ve been told I’m now healed (do you know something I don’t know?)

    The minimization list goes on and on.

    Another thing that irks me about these tidy breast cancer stories is that nobody talks about the risk of getting lymphedema. They brush it under the table, as they do all the other after-effects of cancer treatment.

    Our busy culture clearly believes we should all move on with our lives, move from shock to acceptance in two days, as one would go from 0 to 60 mph in six seconds. We’re not allowed to dwell on the negative.

    Thanks for this great post to remind us of how far we need to go to live in a culture of healing rather than a culture of denial.
    XX

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

      Jan,

      I was moved by your comment. People just seem to want to minimize things, don’t they? And you have been through a lot, let alone having your experience be minimized.

      And thank you for bringing up the lymphedema. THANK YOU! I also had lymphedema, and it is just awful. People never understood why I needed physical therapy.

      I’m glad I did strike a nerve because this is such an issue for me and many others.

      Thanks for stopping by and commenting.

  12. Renn @ The Big C and Me had this to say about that:

    I could say so much on this topic but it can be condensed into one line:

    The people who want us to “get over it” are the people who never had cancer.

    Cancer survivors “get it.”

    That’s why the blogging community is so essential to the mental health of all of us — writers and readers alike! Thanks for starting this conversation.

    😉

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

      Renn,

      You nailed it! People who have/have had cancer totally “get it.” Like you, I find the blogging community so important. It is great to be among like-minded individuals.

  13. Liz had this to say about that:

    Great post, Beth. I finished active treatment in February but in many ways have found my early post-treatment/Tamoxifen days every bit as psychologically difficult, due to the ever-present sense of fear and dawning realisation that this ain’t ever going to be over. There is a very real grieving process to be gone through. Thank god for the breast cancer blogosphere!

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

    Hi Liz,

    Thank you for reading and commenting. Yes, those early days after treatment are quite vulnerable to say the least. It never truly is “over,” is it? I agree that the blogosphere helps us connect and know we are not alone.

  15. Sharon Greenr had this to say about that:

    Thank you Beth for sharing this link with me. Great post! I feel like my train not only derailed but also burned and went up in flames, leaving me permanently scarred and terrified of most forms of ground transportation.

    I was a huge Desperate Housewives fan and agree that the storyline just abruptly ended, never to be mentioned again. With all those kids, surely someone in that family would be emotionally affected!

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

      Sharon,

      Thank you for your comment. You’ve been through hell and back numerous times, so I can understand why you are terrified of “ground transportation.” It’s very hard to deal with cancer, but I think the psychological trauma can be just as difficult in some ways.

      Hoping you have many years of health.

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