Do Patient Empowerment & Squeamishness Mix?

This post originally ran a year ago. I dusted it off because I was looking up medical terms online last night and encountered some photos that brought the old squeamishness back. -Jackie

 Patient empowerment is all the rage lately. While I distrust the way the “e” word sometimes verges on ideology, I’m all for learning what’s happening when we get that front row seat to medicine thanks to cancer or another big diagnosis.

But how best to learn if you tend to be medically squeamish? My previous patient experience was limited to an annual visit, with a handful of garden-variety illnesses and the inevitable screening tests required once you hit your 40s and 50s. I’ve never had a problem with those tests, or with needles, but once I learned my breasts were going to be the focus of a cancer adventure I felt a bit queasy.

The thing is, I can’t even stand nipple rings. Back when my husband Bruce and I used to take his Harley to the big bike rally in Sturgis, S.D., I averted my eyes a lot. I found myself doing the same thing now as I loaded up on breast cancer books. How do those DCIS cells act? Sure. An illustration of a nipple floating off into space during a mastectomy? Not so much.

I wanted to know what to expect without getting too much detail, if that makes any sense. So while I learned enough to know I wanted implants instead of tissue replacement surgery for reconstruction, I didn’t read about surgery details, and I couldn’t look at before and after reconstruction photos available online.

I had gone through the mastectomy and first-stage reconstruction before I became curious about things like how my surgeon was able to balance tissue removal and skin preservation during the mastectomy, or how my plastic surgeon was able to recreate a nipple.

Believe it or not, I actually watched him do it, since it only required local anesthetic. If you had asked me five years ago if I wanted to watch myself getting a nipple built, I probably would have yakked on your shoes. But this was my fifth surgery in nine months, so I had gotten used to it. And I’m really glad I watched because it was fascinating.

But that’s me, and it happened over time. You may want every last detail, or you may prefer letting the experience wash over you. And there’s nothing wrong with that. I would recommend learning enough to be able to make an informed treatment choice, and giving yourself enough time to make that choice.  Whether you ever learn what they do with those scalpels or watch them do it is totally up to you.

For the record, nipple rings still gross me out.

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15 thoughts on “Do Patient Empowerment & Squeamishness Mix?

  1. This is great, Jackie. I just realized something similar. I’ve been reflecting on my whole reconstruction journey and how hard much of it was, simply, because I was afraid of the procedures. When I look back now, it seems like a huge waste of emotion. If we only knew at the begining what we’d learn. Nipple rings gross me out, too.

    • Thanks, Stacey! Don’t be too hard on yourself for spending emotional energy on this. We can’t know what we don’t know. And besides, being a bit fearful of having a rather personal body part cut into could be seen as a sign of mental health 😉

  2. Great observations Jackie!

    I am a control freak, so I always wanted to know and see everything humanly possible. Shoot, if I could have done my surgeries myself I would have. lol But as a childbirth educator I learned not everyone had the same tolerance or desire for detail. It is so important to respect where a person is at. At the same time, it is also essential to recognize if or when someone has changed and be open to that as well. The bottom line is medical professionals need to be flexible and respectful.

    And nipple rings? ow ow ow ow….

    • Thank you, Marie! So good to hear from you! You raise a great point about respecting where a person is at and being flexible. I was blessed with four great doctors who are exactly that.

  3. Jackie,
    Like you, I’m not big on blood and tissue, but after 10 breast cancer surgeries, including two nipple reconstructions, you just kind of go with the flow. During my first nipple reconstruction, James watched with fascination, and when the second one took place, he not so jokingly told the plastic surgeon he’d like to assist. Without missing a beat, the surgeon told him to scrub up, at which point we all laughed. James, however, assumed the best role possible: Loving, moral support.

    XOXOXO,
    Brenda

    • Brenda, what a great story! Thank you so much for sharing. How wonderful it must have been to have James there. Bruce would have passed out (and that is no knock on him–he was a great nurse. Took full charge of my surgical drains, for one thing. We were both so lucky to have great husbands at our sides.)

      Love how you had humor going on during the procedure–I think people don’t realize a lot of this can be funny. During my nipple recon I looked up and could see what he was doing reflected in one of those big overhead lights and commented on it. One of the nurses freaked out and said “Oh! We’ll move the light!” and I said “I can also just close my eyes.” I did NOT want to mess with that man’s ability to see what he was doing. When it was done I could resist being a smart aleck and said “It needs to be a little more to the left!” Big XOXO back to you!

  4. Yes, indeed, laughing at some of the stuff that went on throughout the process! This is such a good point-how does squeamishness fit into being knowledgeable about treatment. I was glad my nipples were done in the operating room but that was because the PS was doing fat injections into some hollow areas. He felt that was just too many things to do in the office and I was insistent upon ONE visit. All those doctor appointments get on your nerves, ya know? But, I was determined to know all of my options. It is important!

    • Thanks for commenting, AnneMarie! Yes all those appointments piling up do get on your nerves. But when they end it feels like you should still be showing up somewhere. Weird. I agree it is very important to know your options. It’s kind of a fine line sometimes.

  5. Great post, Jackie. Everyone must find their own comfort zone here. Generally, I like to find out as much as humanly possible about procedures and then take time to “process through it.” I do vividly remember when I was researching the different mastectomy options (who knew there were so many of them??) that I became literally nauseous and had to stop myself!

  6. Excellent post! Like you, Jackie, I find nipple rings gross. I have thought a lot about the issue you are discussing, and I do believe squeamishness and empowerment can mix. One can be squeamish but feel empowered to know the truth about what’s going on in one’s body. I did have quite a few squeamish moments myself, but I still had to go forward.

  7. Pingback: Weekly Round-Up « Journeying Beyond Breast Cancer

  8. Thanks for the laughs, Jackie!! Had to get over my squeamishness to go to grad school for PT — from cadaver dissection to being poked and prodded with practice evaluation/treatment by classmates (which often left me feeling like I need real PT afterward…), I thought I’d pretty much lost all dignity. Then breast cancer came along…good grief!! THAT was REAL grad school!!

    A good thing about squeamishness is that it often signals an issue that needs a little more compassion and awareness than our docs often give us. Like, hey, how about a little more local anaesthetic before you jab me with that wire or needle?? And we have a right to ask for it. And that’s empowering.

    And I feel grossed out just saying ‘nipple ring’ — I mean, WHY???

    • Thanks for the comments, Kathi! I had no idea you had to dissect cadavers for PT although it makes total sense. Yipes! I like your take on squeamishness sometimes being a signal that something needs a little more work. I never thought of it that way.

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