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Venting.....

abrub's picture
abrub
Posts: 1531
Joined: Mar 2010

So here I am, scheduled for a lumpectomy with lots of questions, and I finally receive my pre-op call. The nurse left me so P-O'd. First, she called at 9:30 to ask if I’d be available at 11 for a half-hour call. I said that would be perfect. I blocked out my schedule at work to be available, and then waited and waited AND waited. She finally called at 11:45, and I had to be out of the office by 12:05 in order to make an appointment that I knew would be on time.

No apologies, but now we’re rushed. She runs down her script, but not explaining anything. “Oh, you’ve had cancer before, breast?” No, Metastatic Mucinous Adenocarcinoma of the Appendix. “Huh? Where was it? Can you spell the last word?” APPENDIX! “Did the dr say you needed medical clearance for the surgery?” No, I don’t believe so. “Have you had a chance to review the breast reconstruction options sheet?” Excuse me? I never received a sheet, and my understanding of my surgery is that it is to remove 2 likely-benign lumps – we’re not talking about anything radical. “Do you have any pain?” Well only from the biopsy that was done last week and is still a bit sore.

I was under the impression that the nurse on the phone had no comprehension of the procedure that I’m scheduled for.

She then told me about pre-op and asked if I knew where to go. I told her that I understood I’d be going to radiology first for the wire localization, and asked if everything was taking place at the hospital South Campus. Um, she wasn’t sure, because she didn’t know about this radiology thing. Um, yes, she thought it was all at South Campus. (Yes, it’s all at the South Campus site of the Medical Center, but I didn’t like her not being sure.)

I then tried to as her a few questions, like what I could expect my day to be like, and when I’d be allowed to shower again. However, she had no clue about anything, and finally referred me back to my surgeon. (I’d been referred round in circles from one to the other.)

I then raced out of my office to get to my next appointment (the therapist who is keeping me sane through all of this) and spent an hour fuming and grousing. Dr. P – thank you for all of your help over the past 5 ½ years of my cancer journey!

Needles to say, I was fit to be tied. Here I have surgery soon, with some pretty basic questions that she couldn’t answer. When I described this incident to Dr. P, he asked me if she was a nurse. My answer: She’s a voice on the other end of the phone who self-proclaims to be a nurse. I don’t know the reality. (Gosh, I love Dr. P!)

I finally reached my surgeon’s nurse who clarified for me what to expect, and I was much relieved. Now it’s a matter of just staying busy for the next few days, and then awaiting the pathology report, ideally by Friday.

Aaaarrrggh!

On a side note, you pink sisters have been wonderful welcoming me and addressing my concerns and questions about the wire localization and lumpectomy. I can’t thank you enough for your support. While I’m hoping that when all is said and done, I’m not a “full-fledged” member of your team (I have enough membership stripes in the rare cancers and colorectal boards), I’d like to retain honorary status, as I want to be here for you as much as you are for me and others.

Thank you.

Alice

heart-in-hand
Posts: 92
Joined: Sep 2012

I think I have talked to that nurse. In fact her or her sister many times! The lack of communication with one hand not knowing what the other is doing has been so frustrating to me. And we won't even address the obvious need to call on time when that had been prearranged! How frustrating for you. I am glad the surgeon's nurse talked with you about what to expect.

We are here for you....Aaaarrrggh! away anytime ;-)

Love,
Kay

tufi000's picture
tufi000
Posts: 442
Joined: Jun 2005

Alice you are already a full-fledged member here which isn't predicated on severity of dx or extent of treatments. You have already experienced the ramifications of battle and though we are all here to support you, you can bring valuable comfort as well.
OK, Pig calls me The Hammer when stuff like your phone experience threatens my personal balance. Knowing a bit of you, I am surprised you allowed her to get as far she did! I have been fortunate to have the consummate coordinated care and never more than a couple of minutes on the phone. You know enough about being your own advocate, that even in a transitional precarious state, you can maintain. I believe in you Alice, your strength, your perspective, and heart. While the details may differ for each of us,, the road traveled is met with the same challenges.

In my daily thoughts and wishes for the best.

Sherry

abrub's picture
abrub
Posts: 1531
Joined: Mar 2010

I didn't deal as well as I would have (in demanding that she find someone competent) because I was rushed and had to get out of there, ideally with some information from her in hand. Everything I tried to do to facilitate (I had an info sheet which I'd given to my dr and could readily fax to her that includes all my current meds and dosages, medication problems/allergies, and a list of all surgeries and procedures) but she had to go 1 by 1, misunderstanding me along the way. It was all I could do to get her off the phone and get to my (by then, extremely well needed) therapist appointment!

However, I've told the other people involved about her, and hope she won't be messing someone else up.

I can just imagine her asking someone else who was having the same procedure as me about the breast reconstruction info sheet, and scaring her to death! I recognized that this wasn't relevant, but she made it sound like it was. Nice way of calming a patient before surgery. (That, plus not understanding anything about my procedure, and the radiology component.) Boy, I felt like I was in competent hands - NOT!

You've always been there for me, and yes, I'm full-fledged. I went through the entire initiation rites, albeit for a different cancer. But regardless of our cancer, we remain cancer sisters all!

tufi000's picture
tufi000
Posts: 442
Joined: Jun 2005

There is no point in even trying to work with someone like that gal. Just cut the call and ask for someone who knows whats up, that you have no time for this.
When I was reading your post, I got so scared because it sounded like you were being scheduled for a mastectomy or two!!!! Imagine a newbie totally freaking out!. OY vay!

Buried here in MIssouri, it is refreshing to to get reacquainted kiddo.

mom62
Posts: 600
Joined: Mar 2004

Alice,

Sometimes I wonder as well how these people get a job. I found I had to be my own advocate and know what was going on. I always talk to the doctor or a physician assistant. You are welcome to vent anytime that is what the boards are for. I hope your surgery goes well. Keep us posted.

Terry

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