Friday, September 21, 2007

ongoing or neverending?

First conversation:

Nurse, doing my pre-chemo blood-draw: "So are you almost done?"

Me: "No."

Nurse (chirping): "Yup!"

Me: "I have metastatic cancer, so treatment will continue for the forseeable future."

Nurse: "Yup!"

Second conversation:

Nurse setting up my chemo: "You must be almost done."

Me: "No, actually. I have metastatic cancer and will be in treatment for some time."

Nurse: "Well, they usually only give Herceptin for a year."

Me (Too worn out to explain that this is not the case when Herceptin is being used to treat cancer that has spread or metastic): Hmmm.

Am I wrong to hold health care providers to a higher standard?

Don't get me wrong, the nurses are, generally speaking, wonderful. And busy. So I don't expect each one of them to have read my chart.

But shouldn't oncology nurses know enough about differences in treatment protocols to not ask these kinds of questions if they don't really have an interest in the answers?

Just asking.


joy said...

That must be frustrating...and painful, especially when you're exhausted and feeling awful, to have to's especially hard because they probably ask to demonstrate their interest in your's a demonstration of compassion that just ends up hurting more than indifference.

Yuck. I'm sorry.

jacqueline said...

Common sense social skills are not rocket science. I think if a person is in the medical/healthcare/patient care arena at ANY level one should accept that communication is a huge part of the business. I'm sorry, those nurses may be "wonderful" but they sound socially inadequate and il-equipped (that's an understatement) for their job. Seriously- how long would it take to read your chart or get an update on you before they meet with you?

"But shouldn't oncology nurses know enough about differences in treatment protocols to not ask these kinds of questions if they don't really have an interest in the answers?"

After my radiation treatments during my first diagnoses I wrote a long letter to the Department of Patient Care Services at the hospital where I was treated. I explained all the inappropriate nuances that I experienced during my treatment. For example:
*Doctors and nurses would enter the treatment room while I was on the rad table, topless without announcing or introducing themselves.
*Obnoxious music from an annoying radio station played in the treatment room. When I asked the music be turned down or off you would've thought I asked for a thrown.
*I noticed older/elderly patients were spoken to like they were children.
* I had to beg and harass the rad tech to see my treatment films for weeks so that I could "participate" in my progress- keep an eye on my ribs and lung for any changes.
*nurses were nice to the nice 'n perky patients and cold and awkward to the emotionally fragile ones.
this is to name a few...
I received a letter from the President of the hospital thanking me for my insight and assured me that the issues I mentioned would be thoughtfully addressed. About a year later I went to a follow-up visit with my radiation oncologist who had moved to a different hospital. When I informed her that I was moving to NY she was disappointed because she wanted to offer me a job in patient care services...
I wish I could find the letter that I wrote to the hospital but I think I threw it away when we packed to move in an "over and done with that" frenzy.
Speak up and speak out to the right folks and things CAN change.

I hate that ANYONE is rude to you! Um, do they not know who you are?... a BADASS SUPERHERO!!!

Babz Rawls Ivy said...

Fuck them! You know you better than they do. Yes of course you want people to be on top of their jobs and sometimes they are not. Fuck them. You are a Shero and you got this. You are so much more advanced in what you know that you could teach a course in this. Fuck them. Don't take their mess personally. I have this problem each time I have to go to the emergency room with a dairy episode--I have to tell folks (hospital staff) what the deal is and I am always met with "how can this be" or I have never heard of this before" And I am usually like "and because you never heard of this that somehow it can't- what exist in the world" It is exhausting trying to explain that "No I do not have pnemonia/bronchitis/influenza--just symptoms that mimic because of the nature of the allergy"--and "no you can't give me the shit you use for other patients with pnemonia/brochitis/influenza--please read my fucking chart!" So you see stupidity isn't limitted to your neck of the woods. It is everywhere!

laurie said...

I do think they are well intentioned but 'are you almost finished?' is a pretty loaded question and I think a response of 'no' should warrant more than a distracted, chirpy, 'yup!'
Jacqueline, good on you for calling them on stuff and Babz what you obviously can relate. I once went to emerge with a reaction to herceptin and no one there had ever heard of it, nor would they listen to me when I tried to explain what needed to be done.
It's all so needlessly frustrating.
Thanks for listening...

Julio said...

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Anonymous said...

You are so right! I think it is rude to comment on treatment when you are out of the loop. Every patient is an individual and should be treated as such.

Anonymous said...

wow...twice in one day huh? I'd be annoyed too.

Hang in mom was VERY sick w/a failing liver, which caused the toxins to back up and make her look 8mos pregnant. Once we were in a grocery store and a woman said "When are you due?" she had heard it three times in that shopping trip alone...she looked at the woman and said "I'm not having a baby, I'm dying, and I'm tired of answering the same question." Granted, the woman was only making conversation and had NO way to know. But just by being honest and forthright (albiet angry, yes) she felt better all day for just getting it out. Sometimes it just builds up, ya know?

Babz Rawls Ivy said...

I will say for every fucked up medical person you encounter, you get several who are so great at what they do that you think God sent them from heaven just to help you. That is the saving grace that every so often you get gems that make all the crap so bearable.

laurie said...

Exactly, Mommyof2galz, every patient is different and oncology professionals should realize that.

And toomanyboys (love that name, by the way) thanks so much for sharing that memory. I know exactly how your mom must have felt. And, back in November of last year, I looked like I was very pregnant, too, due to a buildup of toxins on my liver. I am very fortunate that everything is under control right now but it was a very scary time.

laurie said...

Oh, and, Babz, I totally agree with you. The great majority of nurses and other health care providers I have met have been fantastic. It's importatnt to remember that.

platespinner said...

yes. yes, they should about treatment protocols and yes, they should have the common sense to know how to talk to patients without adding to the emotional burden. hmmph.

laurie said...

platespinner! I'm so happy to hear from you. I've been thinking of you lots over the last week. And you, of course, would know exactly what I'm talking about.

Anonymous said...

There are a lot of wonderful, hard-working medical professionals out there. But anyone who works with a vulnerable population (and I feel vulnerable when I’m in my gown in the hospital, dammit!) should be held to a higher standard. If the guy at the bank acts like a twit, I can leave. But it was impossible to walk out when a nurse yelled at me because I wasn’t giving birth “fast enough”.

I have some particularly hard feelings about the nursing profession after spending extended time with my 94-year old grandmother in a nursing home in the US. I want to respect nurses because I can see that it’s a really challenging job with a lot of risk involved. And sure, patients can be abusive. But after watching nurse after nurse yell at my grandma because her arm was broken and she needed help toileting, because she politely asked for pain medication before her 4 hours were up… it’s time for mystery shoppers in health care.

If it's too tough to be polite, respectful and professional, then do something else other than being a nurse or doctor.

- Ruth

Anonymous said...

It drives me crazy that the nurses don't just have the basic common sense to handle conversations like that, but it's almost insulting that they don't bother to go through the effort of looking at your chart to know what your particular circumstances are.

I think you should write a letter of complaint, although not mentioning anyone by name because clearly those nurses didn't mean to be so dense. But, it's really inexcusable that nurses who are setting someone up for chemo would be so clueless about your treatment. It just seems like if I, a non-medical professional, know what to say and what not to say, they should at least be capable of the simplest of conversations. I remember you having a similar problem not too long ago with someone else. I can't remember if it was a nurse or a tech of some sort, but I do remember being shocked at how stupid they were.

laurie said...

The thing is, that, generally speaking, the oncology nurses are the best at relating to patients. I could give many, many examples of nurses who really get it. In fact, the woman beside me was complaining about how 'the voices' have been giving her a hard time and the nurse working with her was patient, compassionate and understanding. I especially liked how she engaged the woman, asking her when she was diagnosed, etc.
I could tell many, many stories of great experiences with oncology nurses.
But I guess because nurses are on the front line, when they screw up, patients really feel the brunt.

Mom2Amara said...

Frustrated doesn't even describe how I feel for you right now.

My mom was an oncology nurse before her own cancer diagnosis. And she took the time to get to know each patient and their circumstances.

So I hold each nurse - oncology or not - to a higher standard. And everyone else should too. Our live are literally in their hands. The least they can do is show competence with compassion.

jana said...

I always hated this question from hospital personnel. Tt wasn't always nurses--sometimes it was phlebotomists or x-ray techs or social workers. It was always so discouraging to be seeing the end so far away...

Anonymous said...

I just found your blog after going to mommybloggers and started reading some old posts. My father passed away in July after his battle with cancer. He had heart problems and diabetes so chemo and radiation were very hard on is heart. He was in the hospital a few times during his treatment for 2-3 weeks at a time. His last timw was 38 days. He had some really great doctors and nurses, but unfortuntey he also had some really bad ones. After reading this between what you have been through and what I know my Dad went through and what I keep hearing more and more it makes me wonder if anyone gets the care they deserve when facing just a horrible thing like cancer. If you don't care or have a genunine concern for helping others don't go into healthcare!! Sorry for the rant. I wish you the best with your treatment. Hopefully you can stick with the good ones that will make it easier to get through.