How Do I Distrust? Let Me Count the Ways….

Posted on: August 1st, 2013 by
27

As is the case for many people affected by breast cancer, this disease has claimed my trust.

I don’t entirely trust my body. It has betrayed me and can betray me again. I sometimes reside in hell, where aches and pains and the scary results of a bone scan assail me with fears of recurrence. Prior to cancer I believed if I ate healthy foods and exercised, I would prevent disease.

How wrong to lull myself into a false sense of complacency.

Luckily, I have found swimming. And that has restored some sense of trust in my own body.

I no longer delude myself that I’m a “survivor.” I don’t trust that word. Now I know better. I now know that cancer can metastasize at any time and in any number of years from now.

I don’t trust corporate sponsors raising money for breast cancer “research” and awareness campaigns. Yeah, right.

I’m skeptical of the media’s many claims of what causes cancer and what can help prevent it. I can’t believe sound bites.

I really hate admitting this, but I don’t always believe my doctors. I want to, and I do a lot of self-talk about their high level of expertise, but I’m aware they don’t know everything. One of my former doctors had told me that I had reason to hope I’d be cured, but how can I trust what he said?

There’s no cure for this disease.

My oncologist asked me to trust him when my bone scan results went awry, but I’ve had a helluva time believing him.

I don’t trust myself in waiting rooms. Every time I’m in a waiting room, I think about dialing 911 to emergency-transport me out of the hospital. Other times, I just feel like running away, getting into my car, and slamming on the accelerator to get the fuck out of this place as fast as I can. But of course I don’t. I stay at the doctor’s like a good little lamb.

911

I don’t trust that I look good. I don’t believe the cliché that my scars are my “battle wounds” and that I should be proud of them. Instead, I loathe my body because it wasn’t the one I was born with. I am gradually learning to accept my body, but the scars are a daily reminder of how much I can’t trust. And in reality how cancer has ripped me literally to shreds and then I was put back together again.

Maybe I should re-read Mary Shelly’s Frankenstein.

I feel information overload about all the information out there about cancer. I can no longer cope with hearing about all this material. Which sources can I rely on?

Cancer has thrust me into a world of unknowns; I can no longer believe that things happen for a reason. Instead, I believe that things happen randomly and by chance.

I can’t trust that a positive attitude and faith alone can keep one safe.

I no longer trust my dreams for the future because I realize, all too painfully, that I might not have a long one. My pre-cancer self felt optimistic; I had a bright future, but right now, in this moment, I can only live in the present because I’m not so sure the future is there for me.

But, then again, the future is uncertain for all of us. This is part of the human condition. I must embrace what lies ahead, rather than recoil from what lies ahead. And I do trust myself to try to enjoy each moment of what’s left of my life.

All I can do is try.

Have you had trust issues related to a medical condition?

Please feel free to share your personal stories of a time of trust or distrust.


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27 Responses to How Do I Distrust? Let Me Count the Ways….

  1. Jan Hasak had this to say about that:

    I distrusted my body when I was diagnosed with metastatic disease. How could that happen? I had done everything possible to stave it off. But betrayal can happen in many areas of life. And it takes much to regain trust. Keep on these great posts!

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

      Thank you, Jan. I hope you are doing as well as possible. Betrayal does take place in so many areas of life, as you say. I’m sure there are many trust issues with metastatic disease. Thank you for commenting and take care of yourself.

  2. Renn had this to say about that:

    Beth, trust has always been an issue for me, but no more so than after I was diagnosed with breast cancer. I had a very, very difficult time putting my faith and trust in my doctors, especially after I experienced complications during reconstruction. I finally snapped out of it when my plastic surgeon told me for the upteenth time that I would have to trust him, that he was looking out for me, he was in my corner, and I was stuck in that corner. Really all I needed to hear was that someone was looking out for me. I left his office feeling the weight of the world lifted from my shoulders.

    I struggle with letting go b/c I feel like I have to have all the answers or I will fall through the crack. Talk about anxiety-producing thought patterns!

    Anyway, I relate to everything you wrote about, this is an excellent post and I think it will strike a cord with many.
    xo

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

      Renn, trust is difficult, isn’t it. I’m sure having reconstruction complications didn’t help with the trust issues. Your plastic surgeon sounds wonderful and a great advocate for you. I’m so glad he was able to help you trust him and feel so much better emotionally.

      Sometimes one has to let go and trust. Thank you for your kind words about my post.

  3. Laura Sullivan had this to say about that:

    Some years before I was diagnosed with breast cancer, a friend had shared this “joke” with me: “What do you call a doctor who got all A’s in medical school? Doctor. What do you call a doctor who got all C’s in medical school? Doctor.

    And let me say, that statement is true! I’m glad that I learned that back then because it helped me with decision making after my dx of DCIS w/microinvasion TNBC High Grade. The surgeon who did my biopsy in a small town south of Chicago, said that for all practical purposes, my biopsy could really be called a lumpectomy & that I might just need some radiation treatments. Well, I got a second opinion at a highly ranked Cancer Hospital and opted for a BLM. During surgery they found a 1cm tumor that hadn’t been detected my any of the imaging. My “lumpectomy” took out a 6mm tumor…Hmmm…big difference!

    I strongly believe that we have to be our own healthcare advocates, even when we barely have the strength to do so.

    And by the way, I don’t care for the color pink. My favorite color is Red.

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

      Laura, I love that joke, although it reminds me how scary it is to navigate the medical system because it’s sometimes difficult to figure out the doctors who got A’s and the ones who got C’s.

      Wow. Your lumpectomy surprise was not a welcome one. I agree that we must advocate for ourselves. It’s so very hard to do. But if we don’t advocate for ourselves, who will?

      I’m also not fond of pink. I love every other color.

  4. EAK had this to say about that:

    Trust is very difficult to get back once you lose it. I have not trusted my body since I found out there were mistakes made. I live with an uncertainty I ca’t shake I am told to just move on from it. But you can’t move on from it when your entire life is left hanging in the balance. I too erote my blog on smilar terms last night. If you get a chance I would appreciate if you could read give me your thoughts. It never ends does it Beth… Love Alli…XX

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

      Alli, I’m sorry that mistakes were made with your body. That’s simply awful and unacceptable. Yes, I’ve been told to just “move on” from it. Yeah, right. Like one can just move on from cancer and its treatments.

      I will check out your blog and comment.

  5. Dianne Duffy had this to say about that:

    Beth,

    I no longer trust my body (cancer, ongoing pain), my mind (depression), my faith (cancer, depression, death of friends, ongoing pain, unanswered prayers…), my friends (what friends?), my marriage (two years and 4 marriage counselors later, still living in hell), and the medical community (misdiagnosed at every step).

    Trust? What’s that?

    Dianne

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

      Diane,

      I can so relate to your comment. After my intitial diagnosis and treatment, my marriage ended. While that was a good thing for me, it seemed everything in my life was falling apart.

      I’m sorry you had to deal with misdiagnoses. Horrific, simply horrific.

      It’s so hard to trust after all you’ve been through. Thank you for joining in on the conversation.

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

    Hi Beth,
    You really hit on something here. As Alli said, trust is hard to get back once you lose it – even when you’re talking about your own body, in fact maybe especially then. We are all vulnerable especially after a diagnosis of any serious illness. This vulnerability is part of what makes us question, feel uncertain, afraid to trust and a whole bunch of other things. I think it’s also part of the reason why we feel so connected to others in this online community (or in any support group). We are vulnerable together and that helps a bit. Just as you said,”All I can do is try.” That’s all any of can do. Thanks for writing about such an important topic.

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

      Nancy, trust is so difficult, isn’t it? And I agree with you that vulnerability is there in abundance. It’s interesting because before cancer, we are still all vulnerable to all kinds of conditions/diseases, but we for some reason some of us feel somewhat invincible.

      The truth is, cancer reveals our vulnerability, as you say. Like you, I’m grateful to the online community, which helps us handle our vulnerability together. We are all vulnerable. We are all human. I will continue to try to move on. In many ways, I have, so there is progress.

      Thank you for your comment. I appreciate it.

  7. Julie Goodale had this to say about that:

    Oh, Beth….this is such a good post! And you didn’t even get into personal trust issues with partners/family/friends….There’s a whole lot more trust issues out there than I care to admit. Thanks for writing this.

    Julie

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

      Julie,

      Thank you. Oh my gosh — yes, the personal trust issues with loved ones are there in abundance. I didn’t foray into the complicated world of trusting others in our lives. Maybe that will be a post for the future.

  8. Brandie had this to say about that:

    You have written exactly how I feel. I don’t trust my body anymore, and often times I’m very angry at it – like it let me down with the cancer, with not being able to rebound after treatment (even though it’s been two years).
    It is frustrating as hell.
    And the advice: one day something causes the cancer, the next it can cure it. What are we supposed to do? To trust? To believe?
    All of that to say, I hear you. And feel the same.

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

      Brandie,

      Thank you for reading my post and leaving a comment. It is so hard to trust our bodies once they have betrayed us. I’ve had so many emotions: from anger, to grief, to sadness, to depression over the feelings I couldn’t trust my body any longer.

      I never know what to believe anymore.

  9. Emily had this to say about that:

    I never thought much about trusting doctors until I got breast cancer. I ended up firing my oncologist after my first chemo when I landed in the hospital, and was quarantined for a week. Since then I’ve learned to trust myself as to how my body feels and to tell doctors what my thoughts are on all issues. At one point I had to call a drug company to confirm my side effects since my doctor did not believe me. Of course I fired her too! In the last 5 years I’ve learned to research well, fire doctors when they don’t respect your opinion…and learn to deal with all of the side effects,including lymphedema of the trunk. It’s not easy to keep up a great attitude, but what
    else can you do? Of course depression goes along with all of this, but you have to keep trying!

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

      Emily,

      You have been through a lot, and I can understand why you fired these doctors. Of course, if a doctor steers you wrong, it’s that much easier to distrust doctors. It’s wonderful that you are proactive. I do believe that, even with the best medical care, we must be our own advocates.

      Thank you for reading my post and commenting.

  10. eileen@womaninthehat.com had this to say about that:

    While I relate to so much of what you wrote, I have a little different take. I’ve had other health issues for some time, although none as serious as cancer. When I was 34, I had a hysterectomy (uterus only) because of a huge fibroid tumor. When the tumor was in, I felt like a foreign intruder had violated the boundaries of my body, but I never felt my body itself had betrayed me. More like it forgot to close the gate.

    I guess I look at all this as part of the human condition, just like aging. We know aging happens which leads to ultimate death. Sometimes disease precedes aging and accelerates the process, but it’s no secret these things happen, and will happen at some level to each of us. So while I don’t like it and must deal with the trauma, etc., I don’t feel betrayed by what I consider the inevitable.

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

      Eileen,

      You have a very grounded, level-headed view on the human condition. And I do agree with you: after all, people — young and old — get diseases and all sorts of ailments. We are not made to be machines, and even machines break down from time to time.

      While technically the body doesn’t betray us, it’s hard to see that from an emotional point of view. I know my body wasn’t plotting against me with a breast cancer diagnosis, but I still feel betrayed to some extent.

      I think that’s because prior to cancer, I had this unrealistic view that if I took great care of myself, I would be less likely to have disease.

      Thank you for your readership and insightful comment.

  11. Pingback: Weekly Round Up | Journeying Beyond Breast Cancer

  12. Catherine had this to say about that:

    Don’t get me started on the trust issues. Oh my word – basically everything you just listed has come up in my mind one time or another. And as for dialling 911 to escape the hospital, it might be a good idea. Whenever I’m there, my body aches to escape. But like you, I’m a good patient and sit quietly.

    There’s a pull between obligations, promises, hopes, doubts, and even that dreaded ‘no cure’ scenario. We’re right there in the middle, and sometimes -in all honesty, I’m quite tempted go on vacation and never come back!

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

      Catherine,

      Yes, there should be a 911 for getting out of the hospital, for sure.

      I know what you mean about wanting to go on vacation from these issues. I wish I could as well.

      Thank you so much for your input!

  13. Patricia Shurtz had this to say about that:

    I really related to your post. I feel and have felt all of the thoughts you describe. I always believed pre breast cancer that bad shit and disease happened…just felt like it happened to OTHER people. What a rude awakening…Cancer crushed that narcissism! Everyone lives their lives with the sword of Damocles
    Dangling haphazardly above it. But…what’s wrong with acknowledging that fact and just squeezing as much life as you can…as you choose to live it…key: as you choose to live it. I say no more often and I give myself permission to do things I didn’t do before. I despise my limitations, swollen arm and crappy reconstruction. But screw it…I mean that. I do the best I can to ignore them, and to pursue those actions which give me meaning and pleasure…kind of like how I should have been living my life before cancer.

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

      Patricia,

      “Everyone lives their lives with the sword of Damocles dangling haphazardly above it.” Perfectly said. It’s so true, yet before we get seriously ill, we delude ourselves into this complacency, don’t we? Pre-cancer, like many people, I took my health for granted.

      I agree that how we choose to live our lives post-cancer is up to us. I really like your attitude because you are right: all we can do is live our lives the best way we know how. Most of the time, I’m pretty even-keeled, and I always appreciate my life.

      But bring me to the doctor’s, and the trust scale runs amok.

      Thank you for reading my post and commenting. I’m glad that you choose to live life well despite these limitations on your body.

  14. BD had this to say about that:

    Quite a good blog. I have medical PTSD from a couple of hospitalizations when I was 5 years old. Four years ago, when I was 56, I was diagnosed with inflammatory breast cancer. I had managed to forget about my PTSD…until then. It came rushing up out of my subconscious, creating almost insurmountable difficulties for me in trusting the medical establishment, meaning my oncologists. Though I am currently cancer free, thank God, I am continuing to battle with the medical PTSD. It’s my most exhausting challenge, at this point. Trust. The ability to give it, in confidence, is so valuable.

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

      BD,

      First of all, I’m so glad you are cancer-free.

      Regarding PTSD, from what I understand, it’s more likely to occur from a trauma if there was a previous trauma at some time. I don’t know why some people develop it and others don’t.

      I can totally relate to your comment about battling with the PTSD. That is something I also must cope with. It is exhausting and a lot of work to deal with it effectively. My thoughts are with you as you continue to battle PTSD.

      I really appreciate your candor, and thank you for reading and commenting on my post.

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