When I started treatment, my goal was to make sure the medical staff thought of me as the perfect patient. I was going to do exactly what they said to do and follow all the rules - and I was going to be happy about it.
The first six or seven months, that was the way I operated. I went through chemotherapy and a lumpectomy. At one point the team decided I should have a port implanted in my chest so the drugs could be administered without needles in the arm.
I preferred to undergo the surgery under conscious sedation to implant the port because I didn’t seem to recover as quickly when I was fully sedated for a surgery. The anesthesiologist was someone I knew, and we were talking before the surgery. Then they put the drape up between my face and the surgical field so I couldn’t see where they would be cutting. I was still very aware of what was going on even though I couldn’t see it or (theoretically) feel the surgery. I heard the anesthesiologist say, "Ok now - no whining." I steeled myself, "I’m going to be good and I’m going to be strong and I’m not going to whine."
Six weeks into chemotherapy, Cheryl is balding, but full of life.
But the surgery was not what I expected at all. During one part of the procedure, when the surgeon was using what seemed like a hammer and chisel to pound the port in place inside my chest, I didn’t think I could take it. I was trying so hard to be strong, but it was awful and I felt like passing out. But I didn’t whine.
After the procedure, I told the anesthesiologist how hard it had been. And his face contorted and turned white. "Why didn’t you tell me?" he said, upset. "It’s my job to make sure you’re comfortable!"
"But you said, no whining," I replied.
I was shocked when he said, "I was talking to one of the nurses."
Light bulbs went off. Right then I realized that I was the only one in the room who had information about how I was feeling, and it was my job as part of the team responsible for my health to communicate that information. I needed to stop being a compliant, non-complaining patient. I needed to speak up and share the information about what was going on inside my body with the rest of the people who were working with me to try to fix it.
In the course of the next six to seven months, I completely changed how I interacted. I learned how to give myself a shot I had to take daily so I didn’t have to wait on a nurse or get an appointment. I worked with my doctor on a daily plan for my medication, which needed to be adjusted regularly when we were trying to figure out what would work. I had gotten to the place where I knew what I needed. My doctor was reviewing my suggestions, but I was making decisions. I credit that engaged, that empowered, behavior as one of the reasons I was cured.
How have you taken control of your own healthcare decisions? What do you do to prepare for a doctor’s visit? Do you feel comfortable approaching your doctor with ideas or information?
Tomorrow’s Post: Enduring the Journey, Finding the Cure
| October 14th, 2009 at 8:14 am
What an awful experience, I’m so sorry you had to go through that.
When there is something I want from a doctor (meds, tests, referrals, whatevers) I always ask “What do you think about {whatever med, test, referral I want}” If they don’t agree with me I ask why.
I’ve been wrong, and once the why is explained to me I typically agree and it almost always opens up a good dialog.
When I want a lot out of an appointment I show up with a list. Or multiple lists sometimes (one of what I’m feeling, one of questions I want answered)
And honestly, there is a doctor in the practice I go to that I’m not comfortable with because of how dismissive he’s been in the past. I rarely see him anymore because of that.
If you aren’t comfortable communicating with your caregivers, you aren’t going to be getting the best care possible even if they are “the best”
As a nurse, that includes telling your nurses what is going on. At least once a week I have someone who tells me they aren’t in pain, they aren’t nauseated, they aren’t whatever and when the doctor shows up they tell them they didn’t want to be complaining, but they really are achey and nauseated.
It makes me feel bad as a caregiver that I wasn’t doing all I could do because I didn’t have all the information. Each morning I tell all my patients that it’s their job to let me know how they are feeling, but there are still some who are too stoic and want to appear brave.
| October 14th, 2009 at 8:37 am
Cheryl, that is the most beautiful photo - thank you for posting it and for sharing this story.
| October 14th, 2009 at 9:44 am
Thank you Cheryl! I’m also an involved patient but not all the providers like it. When my husband was in the hospital we had so many mistakes that I finally told him not to let them do ANYTHING without talking to me unless they told him it was an immediate life or death issue. It’s so hard to advocate for yourself when you’re ill though. Which is why this is a great post along with yesterday.
| October 14th, 2009 at 2:48 pm
Heather — It got worse before it got better. I almost died from a medical error, but the point is — I DIDN’T! In part because I got involved.
I do want to apologize for all those patients who don’t want to bother nurses, but then tell the doctor they were in pain. I know how bad that might make you feel, but we patients need to change in that situation. Not the nurses.
BTW — Did I mention how great the infusion nurses were? Loved ‘em every one!
C~
| October 14th, 2009 at 2:52 pm
Susannah — When I went into the studio to have that photo taken I was wearing a hat. We took several photos, but then at the very end I decided to take just one without my hat. When I took it off, the photographer gasped. But the photo was the best of the lot.
One of the things I did as an e-patient is to start taking my hat off … or even going out without one. It took guts, but it sure felt good.
C~
| October 14th, 2009 at 2:57 pm
Amy,
Not all healthcare professionals like involved patients. That’s why we’re part of a new non-profit called the Society for Participatory Medicine http://participatorymedicine.org The group was founded by a mixture of patient advocates and healthcare professionals — all with the goal of changing healthcare from a top down model into a shared experience.
Please check out the site. In just a few days we’re launching the Journal of Participatory Medicine. Very exciting times.
C~
| October 15th, 2009 at 7:54 am
I’m not talking about filtering information through nurses, I don’t like doing that because it’s passed one more set of hands, details lost, questions asked that I do my best to answer but I know my answer is slightly different than the patient’s would be.
I was talking more about in hospital setting when we already have interventions in place for problems we’re told aren’t happening.
Everything is already in place for me to help I’m just not aware that it’s needed.
No apology needed, I understand that I’m a part of their journey not the other way around. I hope I’m making sense, I’ve changed how I’ve worded it so many times I think I’ve confused myself.