Empty Inside

Like every other woman I know, I have always HATED going to the gynecologist.  It’s uncomfortable, and though I shouldn’t feel this way, I find the whole thing embarrassing.  But the first time I had my annual visit with my gynecologist after having undergone my bilateral mastectomy was … the … absolute … worst.

For weeks in advance, I dreaded the appointment.  And on the day of the appointment, I was in full-blown pity party mode.  But I had what I think are damn good reasons for feeling sorry for myself—reasons that I typically push away or fully repress, but that refused to be ignored that day.  This was going to be the first visit when the “breast exam” really wasn’t going to be a true breast exam—because I no longer had “real” breasts.  Rather, I had reconstructed breasts with implants: my plastic surgeon did a phenomenal job, and with all seriousness, my oncologist said the results are among the best he’s seen.  Dare I say, in the words of Sidra during the Seinfold episode called “The Implant,” they’re “spectacular.”  But they’re not “real.”

I also dreaded sitting in the waiting room, where there almost always was at least one pregnant woman waiting for a prenatal visit with the Ob/Gyn.  Thanks to the chemotherapy that I’d received for Hodgkin’s lymphoma in my early 20s, I’d learned many years later that I wasn’t able to conceive.

So I had reconstructed breasts, and I couldn’t have children, so the whole idea of having to go to the gynecologist felt ridiculous, and that made me angry.  Of course, I knew that I still had to have my annual visits for optimal health, but I felt odd about the whole thing, like I was an imposter.  So I was resentful, irritated, and worst of all, very very down, because all of this made me feel empty inside.

empty inside

But the visit itself was even worse than I expected.  It began as it always does: there was a pile of paperwork to fill out, something that always annoyed me, because I’d been a patient with the same gynecologist for over 20 years, but they still made me complete it all over again every year.  And then there was the never-ending wait.  I liked my gynecologist a great deal as a person: in fact, he was a family friend.  But not once was I taken into the exam room at the scheduled time of my appointment.  And when I finally did get into the room and changed into that terrible gown, I always had another lengthy wait—but this time wearing only the gown, which made this second wait that much worse than the first.

So I finally walked into the exam room, changed into the gown, sat down, and prepared to wait.  A nurse typically came in before the doctor to ask about prescriptions and to take the patient’s blood pressure.  When one of the nurses finally entered my exam room, I was relieved because I just wanted the whole thing to be over.  And then she said it.  She was holding my chart and some forms and, with barely a glance at me, she plopped my chart on the counter.  She then hurriedly tried to hand the forms to me, but I was too busy trying to keep my gown closed with both of my hands.  I reluctantly let go with one hand to take the papers, as she said in an obviously distracted, hassled tone, “So as you know, of course, the top form is for your annual mammogram …”  What?  Did she really just say that to me?  I looked down at the paper, which was indeed an order for a mammogram.  As I tried to hand it back to her, I said, “Excuse me, but I won’t be needing this, as you can see from my chart.”  She looked puzzled, but instead of opening my chart, she said, “Of course you do.  You’re in your 40s, so as you know, you need a mammogram every year.”  (Okay, if you’ve read my blog before, you know that I take serious issue with that statement, since there is no evidence of benefit for women in their 40s of average risk, yet there is evidence of potential harms associated with mammograms at that age.  But I digress…)  Considering the mood that I was in, I’m proud of myself that I didn’t immediately fly off the handle.  But I was furious.  I looked at her and waited until she finally looked me in the eyes.  “No, I do not.  If you had read my chart, you would have seen that I do not have breasts.  They took all of my breast tissue, so there is nothing to conduct a mammogram on–except perhaps my silicone implants, but that wouldn’t make much sense, would it?”  Unbelievably, it wasn’t clear whether she heard me, so I tried again.  “The most recent records in my chart should include a note from my oncologist about my recent breast cancer diagnosis.  And it should also include surgical records about my bilateral mastectomy and immediate reconstruction.  Without having any breast tissue, I really don’t think that this mammogram is necessary, so I ask that you take this back, please.”  She accepted the piece of paper, mumbling “sorry” under her breath, and then simply walked over to the wall to grab the blood pressure cuff.  She asked me absolutely nothing about my breast cancer diagnosis, not the type or stage, whether it was ER, PR, and/or HER2+, what type of surgeries I’d undergone, which specific chemotherapy drugs I’d received, nor whether I had received radiation.  Even when she then reviewed my current medications, she did not ask whether I was taking Tamoxifen or an aromatase inhibitor should my cancer have been ER+.

When she finally did speak, it was to ask when my last period was–more solid evidence that she had not even taken a glance at my chart.  After all, it was my gynecologist who had broken the news to me that my original chemotherapy had taken my fertility.  As I struggled to remember the last time I’d menstruated, she became impatient and said that I could “just estimate.”  My response: “I’m not trying to remember a specific day from last month, since it’s actually been a few years.  But I honestly cannot remember which year it was.”  No response from Nurse Ratched.

Nurse Ratched from "One Flew Over the Cuckoo's Nest"

And the icing on the cake …  Remember when she picked up the blood pressure cuff?  She immediately went to my left side and went to grab my left arm.  I stopped her and said, “Look, I’m not trying to be difficult.  But please take my blood pressure from the right side, not the left.”  She simply raised her eyebrows, waiting for an explanation.  “My breast cancer was in the left breast and in the sentinel node, so the surgeons had to remove several lymph nodes.”  Eyebrows remained raised, waiting for more information to try to make some sense out of what her patient was rambling on about now.  “I don’t know how strong the evidence is.  But my surgeons asked that I never have my blood pressure taken on the left side.  They explained that because some of my lymph nodes were removed, I was at risk for developing lymphedema.  Because blood pressure cuffs constrict tissue, some suggest that it may cause or worsen lymphedema.  So please take my B/P on the right side.” She finally lowered her eyebrows, moved to my right side, and took my blood pressure.  With no small relief, I’m sure, she then felt she was done with her “difficult” patient and headed to the door.  But before she fully escaped, I called after her and pleasantly asked, “Could you please make a notation on my chart that my blood pressure needs to be taken on the right side?”  She briskly nodded her head and left the room.

I immediately put my head in my hands and tried to keep the tears from coming.  This nurse was clearly in the wrong profession, and I knew that the encounter I’d just experienced really said nothing about me, but spoke volumes about her.  But I was absolutely livid,  embarrassed, upset–and even emptier inside than I had felt just a few minutes before.

Grumpy cat

When my gynecologist entered the exam room about 15 minutes later, I’d had enough time to compose myself, and he came in with his customary warm smile, friendly handshake, and good wishes to my family.  He also spent several minutes asking about how I was holding up after my diagnosis, discussing the treatments I’d received thus far, and talking about my options concerning Tamoxifen versus an aromatase inhibitor.  He obviously knew a great deal about my diagnosis before he stepped into the room, was genuinely concerned, and provided me with the same exceptional care that he always does.  So despite the terrible experience I’d just had with one of his staff members, I did continue with my gynecologist.  However, on the spot, I decided that I would never see him in this specific office location again.  Rather, I’d vastly prefer to make the substantially longer drive to another of his office locations, because I absolutely refused to have any dealings with that nurse again.  I truly hope that after she’d walked out of my exam room, she thought about our encounter and realized that she owes her patients so much more: just for starters, actually LOOKING at the chart, LOOKING at her patients in the eye, LISTENING to her patients, and treating us with the RESPECT and the concern that we deserve.  Sadly, however, I very much doubt that’s the case.  I’d say it’s far more likely that she started shaking her head and rolling her eyes immediately after closing my exam room door, mumbled under her breath about that “pain in the ass” she just had to deal with, and then briskly went on to ruin her next patient’s day.  In retrospect, though I’d been struggling with feelings of emptiness on that terrible day, it was actually the nurse who was truly, profoundly empty—empty of compassion, empty of empathy.  My only regret is that I didn’t tell my doctor about his nurse’s atrocious, insulting, unprofessional behavior.  However, I sincerely hope that if she didn’t learn anything from our encounter, her behavior eventually caught up with her and that she’s now in a different profession for which she is better suited—such as a clerk at the DMV.

Empty

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13 thoughts on “Empty Inside

  1. This is the worst feeling…marginalized, disregarded and disrespected by healthcare professionals. As a long-term survivor, I have experienced this situation more times than I can remember. I was irate and then deeply saddened at first.

    I am grateful for the cognitive behavioral therapy that I receive for chronic, chemo-related pain and for all the support I receive to assist my continuing endeavors to maintain my sight and preserve my corneas. This process taught me to speak up! Share with those whose job is to “care for us” that they have made a positive difference in our lives OR that their words and deeds had a negative effect. The negative judgments that I keep inside me, hurt only me. I do rationalize that perhaps the offenders are having the worst day ever, or that they lost a family member to breast cancer and were struggling with that. Ultimately, I am the only one who can really care for me and I do this every day.

    Thank you for bringing this situation forward Deb.
    Joy Bartnett Leffler

    • Joy, my dear friend, that IS you: it’s wonderful to hear from you! I pray that all is well with you and your family. I’m so sorry to learn that you’ve had similar disheartening, upsetting, and infuriating experiences–and it’s heartbreaking that after everything you went through, you developed chronic pain and ocular toxicities as late effects secondary to your cancer treatment. It’s just so damn unfair: for FAR too many of us, our cancer treatment just keeps giving … and giving … and giving. Joy, thank you for sharing your positive experience with cognitive behavioral therapy (CBT). A few years ago, when attending the annual meeting of the American Psycho-social Oncology Society (APOS) as a patient advocate, I had the opportunity to participate in a session on CBT, and it was such an informative and often inspiring session. Maybe it’s time that I looked into this further. Take care, be well, and thank you so much for your words of wisdom.

      Hugs,
      Deb

    • Kathi, thank you so much for your kind, supportive comments. Yes, isn’t it incredible that this happened so many moons ago, yet I’m still upset about it? I do have to say, though, that writing about it was truly cathartic! And I couldn’t agree more: I’m sometimes downright amazed that, judging by one’s personality, demeanor, and behavior, certain folks (like “my Nurse Ratched”) looked at the healthcare field and thought to themselves, “Yes, THAT’s what I should be doing.” 😉

      Take care, Kathi, and enjoy the rest of the weekend!

      Hugs,
      Deb

      • Don’t get me started on some of my experiences. I was so disgusted with the so-called breast health center I initially used, one of my doctors even complained to the manager, and I called and complained, and nothing changed. Something like a year later, well after I stopped using them, I noticed they had a FB page, so I posted my complaints on their FB page! Got a phone call — a phone call! — from the new manager acknowledging all the problems they’d had & apologizing, and assuring me that these issues were finally being addressed. You never know. Score 1 for social media shaming! xo, Kathi

        • Bravo, Kathi, for contacting the Center directly, sharing your concerns with your doctor who then did the same, and being persistent enough to also post your complaints on their FB page. I’m definitely finding that social media shaming has an impact on such situations like few others! But I continue to be amazed by people like the original manager: after all, the very first lesson of customer / client / patient service (after the golden rule, of course) is that for every person who complains, 25 or more never say a word, but simply go elsewhere (while telling everyone they know to avoid the provider / service / business that treated them so poorly). It’s so upsetting to me that so many of us have had such similar awful experiences. But you’re right: social media is proving to be a powerful way to shine the light on these inexcusable situations and to provide the necessary “incentives” to make sorely needed improvements (or if not, to disappear into the ether). xo

  2. Deb, what an atrocious experience. I’m sure you weren’t up to it that day, but do you feel comfortable giving your doctor feedback about that nurse? He won’t know unless his patients tell him what an idiot she is. Sometimes you wonder how folks like that ever decided to become nurses in the first place. Good grief. Hugs, Kathi

    • Thank you, Pat. I’m so sorry to learn that you’ve had such terrible experiences. I do want to stress that most of the nurses I’ve seen over the years have been wonderful: I honestly don’t know how I would have gotten through my cancer treatment either time without the truly remarkable, kind, compassionate, empathetic, and highly professional care I received from my oncology nurses. But perhaps that’s another reason why I found THIS experience with this one nurse so upsetting and was so struck by her complete lack of such qualities. Unfortunately, human nature being what it is, I often do tend to focus on the few negative events–after all, this happened 8 years ago, and I’m STILL angry–and perhaps not give nearly enough attention to the remarkably positive ones. Heavy sigh. Yes, I’d love the opportunity to connect, and maybe we could chat about ways in which we may be able to join our resources to help prevent other cancer patients from experiencing similarly upsetting encounters. Also, Pat, I just checked out my Twitter account: thank you so much for the retweet! Take care, have a wonderful weekend, and I’ll look forward to connecting with you soon. (My email address is draemadden@gmail.com.)

  3. PLEASE let them know about the experience!!! You can only assume (as she did without taking time to read your chart). You never know what her day was like, if she is brand new to the profession etc. But she might be a top notch nurse if she learns from her mistakes. The only way to learn is to be shown those mistakes. Please, print this blog and at least mail it to your doc’s office so she learns!

    • Marvi, you’re right. Although she most definitely was not new to the profession (she’d been working in that office for quite some time before I had the misfortune of being seen by her that day), she very well could have been having a terrible day. And I sincerely hope that she thought about our encounter, realized the mistakes she’d made in our interactions, and learned from it. But sadly, I tend to doubt that. I do wish I’d told my doctor that very day. But I was so stunned and angry that it was difficult to keep myself composed, let alone talk about what happened calmly and objectively. I decided I would call him about it in the next few days once I’d cooled down. But I found that I became SO angry every time I thought about it–and, still recovering from the chemo, I was trying hard to use what little energy I had on taking one day at a time, staying as positive as possible, and recuperating. So–and this still bothers me tremendously–I never did make that call. Also, it’s important for me to point out that all of this happened about 8 years ago, and my doctor retired a few years back. I’m much more assertive and older and wiser now: So if this had happened in the last few years, I would have immediately called her on her unprofessional conduct and lack of preparation and spoken with my doctor as soon as he entered the room. Now, just as you said, I can only pray that she was having a bad day and this wasn’t her “usual” behavior–or if that wasn’t the case, that she left the profession very shortly after my visit. Thank you again, Marvi: I truly appreciate your comments.

  4. I think many of us have had similar encounters. It’s traumatic.

    I will never forget my OB/GYN handing me samples of Premarin (!) for my intense night sweats right after he couldn’t aspirate my cancerous breast lump…that never imaged. It was a shock to realize how uninformed and out of date his knowledge was and sadly, some never bother to catch up.

    Following my oopherectomy he also told me I no longer would need PAP smears. Sigh.

    • Oh my gosh, Marjorie: his lack of knowledge is downright frightening! I simply don’t understand how an MD who sees only women can be so dangerously uninformed about breast cancer, oopherectomies and, almost certainly, so much else. I’m SO sorry that you experienced this–and I shudder to think about the impact his misinformed “medical advice” may have had on other patients who trusted his judgment.

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