Posted on: Dec 10, 2012 05:49AM - edited Dec 10, 2012 06:16AM by TonLee
Posted on: Dec 10, 2012 05:49AM - edited Dec 10, 2012 06:16AM by TonLee
Two years I’ve been on this board.
I’ve read several accounts of women who struggle with a desire to be polite vs speaking up about incompetent medical care, poor bedside manner, asking questions, asking for proof, etc. Have read them, have experienced them myself!
The vast majority of this heartache seems to come from a hesitancy to be “rude.” If like me, you come to this Breast Cancer table a healthy adult all your life, you probably have no idea how to deal with an uncomfortable, even painful situation, in a medical setting.
Don’t get me wrong. I do believe most people in the medical community are compassionate, educated, and on top of their game.
But even the best have “off” days. Having a plan to minimize the effect on you is worth the mental toil and preparation!
This isn’t just about Oncologists and surgeons. It involves every single person you come into contact with during your tx, primarily the ones who TOUCH you.
I am not a naturally calm retiring personality. Yet, even I struggled with how to be assertive in the medical sphere without being offensive. Doctor knows best, right?
Here are a few things I wish I knew going in:
1. HAVE A PLAN
Not a treatment plan necessarily, but a rough outline of how you will deal with medical incompetence, uncomfortable situations, etc.
Ways you are comfortable executing. And I encourage you to practice them out loud.
You are going to be in treatment for a while, months, years even, and for some, the rest of your life. More than likely you will run into situations in which you are certain the person is incompetent, dirty, or you simply aren’t confident in their ability for one reason or another.
If you’ve thought about a strategy to handle a bad situation, it makes things far easier, far calmer, and more expedient to implement.
2. THINGS TO REMEMBER (every step of the way).
1. This person works for you. Period.
2. This isn't a car, it is YOUR BODY. You will live with the consequences long after the tech/Onc/Nurse etc go home to their families and forget about you. You have final say in what happens and what does not happen to it. Period.
3. Advocate for your body like you would a child's, a husband's, a best friend's.
4. No matter what the Dr/nurse/tech/whoever says, they are NOT the boss of you!
(Okay that last one I don't always say to myself....it’s the gist I’m trying to relay here, lol.)
Here are some of my hard learned "rules.” They apply to me, but may not apply to everyone’s personality or situation. Please read them with that in mind.
1. I don't mind trainees, but they get one shot for a vein or procedure. After that, I am asking politely for an experienced doctor/tech/nurse/whoever. I will get one, or I will simply stop the procedure and leave. If in the middle of a procedure, I’m not a hostage. I will insist on a replacement and be willing to wait them out. Or worst case, leave and go to the ER.
2. Walking out is ALWAYS an option. Barring emergency medical tx, there isn't anything that can't be rescheduled as far as I'm concerned. A few days won't make much of a difference, and even if it does, so be it.
3. If someone makes me uncomfortable, doesn't wash their hands before touching me, seems overly nervous, ..in short if I feel they do not know what they are doing, I will stop the procedure immediately. Explain, in a nice way, that I am not comfortable and have no confidence in their ability, and would prefer to reschedule/have them call for a replacement/etc. Insist on it.
3. GOOD COP BAD COP
If you are a more retiring personality, and have a husband, wife, adult child, friend, WHOEVER..tag teaming is always a bonus.
You can discuss in private your idea of how your tx should go. What is and isn’t acceptable. Your advocate can then go all attack dog when some sweaty incompetent tech drips all over you while stabbing your arm with a needle at least 10 times! (What?!? True story.)
Example: My husband is great in this role even though I don't need him to be most of the time. A trainee tech tried to draw blood from my arm once, got the vein on the first hit, but forgot the tourniquet.
No blood came out. He kept pushing and pulling the plunger trying to use suction, blood into vile, blood out. Before I could say anything, (I wasn't paying close attention because I was talking to a lady beside me and his work hurt) hubby told the kid to "get away from my wife. I'm not even a medical professional and I know you don't draw blood without a tourniquet. Where did you go to school? Get the hell out of here and find someone who knows what they're doing.")
The trainee left, the boss came in, done in 15 seconds.
Now my husband may have over-reacted a tad. lol In his defense, we’d had a series of appts that day, all of which involved trainees, and none of which went well on the first try.
But even if you have an advocate, it's good to have things in your arsenal...they can't be with you every second and fight all your dragons! ;)
Here are some of my “go to” phrases:
1. “I’m not comfortable with this. Would you mind finding someone else to do it?”
2. “I understand your points. I hear you. But, this is what I’ve decided. Are you willing to do it?” (Be ready to move on if the professional says no.)
3. “This is not working for me. I’d like to speak with your supervisor.”
4. “This is unacceptable. I’m not going to go any further until (insert what you want here).”
5. “I’d like to see the patient advocate on staff.”
6. “Look, I appreciate that you tried, but this is not working. I’d like to see someone else.”
7. “Can you give me the research to back that up?”
8. “Have you seen this latest study?” (Always bring a copy!)
Please feel free to add any additional insight or lessons you've learned a long the way and wish you knew at the beginning.
Hope this helps :)
My best to you.
Jan 26, 2013 01:10PM barberchic wrote:
Thank you so much for sharing!! I was just diagnosed Jan. 9th! I'm really scared.....waiting for my pre-op MRI, then surgery and so forth! Best wishes to you!
Jan 26, 2013 04:46PM princesspistol wrote:
Thank you so much for your post. I live in Dayton, OH near you. And I just started this whole nightmare. I was shocked when I went in for a Biopsy, and while the doctor did my lymph-nodes and it didn't hurt, she had a resident practice on me to take the core biopsy. The resident couldn't hold the ultrasound handle and get the needle in at the right direction, the doctor had to help guide her. Now 4 days later, my breast still hurts and I am bruised like crazy, and this is just the Biopsy.
Any doctors offices to stay away from? Any that you recommend? (Private message me if that is more appropriate). I will definitely speak up next time I am not comfortable with a newbie touching me.
Jan 26, 2013 04:57PM LeeA wrote:
princesspistol, good grief - of all the things to have someone practice on - a breast biopsy! I'm so sorry you had to go through that!
Jan 26, 2013 05:44PM TonLee wrote:
Please join our triple positive thread. You will find comfort, and lots of information.
Princess, I am PMing you!
Jan 26, 2013 06:16PM Lorettal wrote:
Thank you so much for this post. I am a nurse and have just been diagnosed with invasive DCIS, and I feel as though I am being pushed to have a mastectomy with no other information. I have been able to have the surgery delayed until 2-18 so I am going to talk with the surgeon. I have been feeling bad that I am questioning him, but I feel so overwhelmed with all that is happening. I am single so I will see if I can get a friend to go with me and be the interrogator. Thanks for listening. Loretta
Jan 26, 2013 09:16PM LeeA wrote:
Loretta, I think you are on the right track when it comes to having someone accompany you when you meet with doctors/surgeons - especially during the early part of the diagnosis period.
Have you thought about getting a second or third opinion? My breast surgeon encouraged me to get other opinions but in my case, I was certain I wanted him to do the work.
Best wishes to you.
Jan 26, 2013 11:41PM lindakr wrote:
princesspistol - the person doing the biopsy held the ultrasound wand too???? When I had mine the US tech held the wand and moved it where the doc wanted it will the radiologist did the biopsy - I don't even see how they could do both and not have issues - good heavens!
Jan 27, 2013 06:42AM Maureen1 wrote:
(((Lorettal))) so sorry you have to face this...I am a nurse too and know how tough it is to be "on the other side of the table", we're so used to taking care of everyone else. Glad you are pushing for answers to your questions and not rushing to a decision until you are comfortable. My breast surgeon let me go with a lumpectomy and chemo first so we could get the information we needed from the pathology and get treatment started before deciding on a mastectomy, that was okay in my case but there may be factors that need to be considered in your case that make mastectomy the better decision for you? You will find a wealth of information and support from these forums and that will help you with your decisions, there is a thread on lumpectomy vs mastectomy - Now that I've had time to look at my pathology and risk factors I have made the decision to go forward with a bilateral mastectomy with immediate reconstruction but can't have surgery until March 4th when the chemo side effects have cleared a little more. Keep asking questions, you can use your nursing skills and experience to fight for yourself now...let us know how you're doing...you are in my thoughts and prayers, take care, Maureen