Wednesday, September 04, 2013

done with the "good girl"

Since the beginning of my treatment, I have asked questions and attempted to make the most informed decisions possible. I've worked at being a good self-advocate without being difficult, just because I'm pissed off and fed up.

Sometimes that's a challenge.

I am, however, fundamentally, and through lots of conditioning, a good girl.

I've put up with a lot of crap and maybe endured some things I didn't need to, for the sake of keeping the peace, getting through and not rocking the boat. The need for approval runs deep in this girl.

Tomorrow, I go in for further testing on my port. The nurses in the port unit are work in very cramped conditions and seem overwhelmed. Last time I had an appointment, I waited for over an hour to be seen and was then treated like I could not possibly know anything about my own treatment or medical experiences.

After five painful attempts to access my port, they filled it with fluid (what the nurse at the treatment unit the next day, called "Drano for ports") that stayed in overnight. That didn't work. When I next spoke the port-team coordinator, I was told to come in for a "portogram", an X-ray with contrast fluid inserted, so that it will all show up better on film.

I asked "Can you tell me why I need to do this? We know it's broken. What will the portogram tell us that we don't already know?" 

The coordinator seemed taken aback but answered readily enough: If the port does not seem to be obviously broken, they can try a slow flush over four hours of the same fluid that sat in my port overnight a few weeks ago. Apparently, pushing the fluid through slowly can be more effective.

All of this begs the question - Why didn't we just do these things in the first place? Why did I have an ordinary Xray and why the overnight with the Drano?

If the portogram shows that, after more than seven years, my trusty port is truly broken, they'll have to replace it. It's relatively minor day surgery, and worth it to have a working port, as 5 years of chemotherapy has wizened and toughened my poor little veins. The two treatments I've had since it stopped working have been stressful, time-consuming and painful. My arm is still covered in bruises. A working port-a-cath makes treatment so much easier.

But there is a catch. They want to put it in on the other side (it's currently on the left). This would mean another very visible scar, just below my clavicle. And because there is very little fat left on the mastectomy side, the port itself will likely protrude as well. The area just below my clavicle on the right side is already sensitive, the idea of adding a port to that side is extremely unappealing.

I know that, in the grand scheme of things, this is nothing but I'm feeling very annoyed. I think I'm going to dig in my heels, this time. If my port worked for 7.5 years on the left side, I see no reason that a new one can't work on that side again. 

After everything I've been through, it may seem like an odd place to draw the line but this good girl has had it. After tomorrow, no more tests. It either works or it doesn't. And I'm not giving up my left side port without a fight.


Anonymous said...

I see no reason either, Laurie.
Start diggin'. :)

Sue Breen said...

why do they have to treat anyone as if they don't know their own bodies, their own spirits? You probably know more about your medical needs and your cancer than the nurses do. Perhaps that comes off as a threat to some medical professionals. Too bad for them! Stand your ground, there is a time NOT to be the good patient. xo

tccomments2013 said...

first, I am so very sorry for all that you have been through. I was a hospice nurse for 30 years, and if I learned anything of value it was LISTEN TO THE PATIENT! your questions and your annoyance (and pain and being given that no good Xray) are totally valid. stay focused on what you want and don't let anything stand in your way! you deserve only the very best care.

sending much love and encouragement,

Karen TC

laurie said...

Thank you to all 3 of you. Literally heart-warming. Mine is all toasty.

Brandie said...

I saw draw the line, ask questions, and let your wishes be known. I understand why you would want the port to remain on the same side and would want the exact same.
I hope they listen, really listen to you this time and that this works out. I'm sorry you are in the spot and need to draw the line though. ((hugs))

laurie said...

Thanks for the encouragement!

Jack said...

Your post raises a number of questions about hospitals. They tend to focus on disease, not on the patient.

The employees at the technical level are not trained in how to speak to other humans, although some of them can do so. Many have anger issues--nothing to do with the current patient--and take it out on us. I have confronted a couple of them on this behaviour with good results.

I found one worker in a full waiting room last May interviewing a frail elderly patient about his background. "Any symptoms of depression" she shouted. "What medication are you on?" I wrote to the hospital and received an apology. There is intelligence somewhere in the system.

Hospital staff like us to be powerless so that things will go smoothly for them. But physicians and others are sensitive to social pressure. My friend Jerry the pathologist who worked in New York for a while described how some families would assemble just outside his office waiting for his report on Bubbie's diagnosis. He did that one first.

One feisty person in the system can be a pain, but families and advocacy groups get attention. Let us know if you'd like to organize a sit in.

laurie said...

Jack: xoxo

ebg said...

Ugh, so frustrating. You have earned the equivalent of a degree in the care of your cancer at this point. You are the primary expert on your body, your response to medications, etc... You walk into that room with a wealth of information no one else possesses about what works for you and what doesn't. Don't be embarrassed or reluctant to be the expert you are.

I realize I'm probably too late with this response and you've already dealt with it, but in my medical journeys I have (on occasion) had great success pre-empting conversations about choices when I walk in with an educated, reasonable preference for the outcome. In your case, that might look something like, "I think it's clear this port has served me well but is now done. I will need a new port. I have had great success (7 years!!!) on this side and wish to have the new port placed here. Is there any medical reason why this can't be done?"

And just stay resolute on your perfectly reasonable and educated preference, unless they can make a convincing clinical case for putting it on the other side.

Good luck. I hope you didn't meet the kind of idiocy you described in your last post and today's visit will be much more respectful of you as an individual.


Anonymous said...

Laurie, please keep us informed about this particularly galling situation. Goodbye Ms. Good Girl indeed.

Love from us all at 211!

The B in T

laurie said...

Well, folk - today was unbelievable,but in the end, I did just what Elizabeth suggested. I must have been psychically channelling the comments. :)

Lene Andersen said...

I almost wanted to say "good girl," but...

Go. Be a warrior. Make 'em do what you want.

deb said...

Dreading to guess what "unbelievable" means in your case. Glad you stood your ground. Good riddance to the good girl. You've earned the freedom to speak your mind, (not that we all don't have that right but some of us find it easier to advocate for others than ourselves at times). Be the squeaky wheel whenever necessary. Even as squeaky you can get, you always treat people fairly and with respect. Love to you. xo