by Ann Toney
On July 2, 2013, I checked myself into an ER, but not the one I worked in. I wanted to be in control of what and when my hospital knew, and I had waited so long that my symptoms were such that I felt I needed an ER. I was wishing my fellow nurses and doctors I worked with were taking care of me though, as I didn’t know any of these people, their skills or work ethics. I didn’t know what was wrong with me, but I knew it wasn’t good. My belly was full of fluid, and I had muscle wasting, fatigue, chest pain, belly pain and shortness of breath with grunting respirations. I knew I could not work my next rotation in that condition. I have never felt so vulnerable in my life. I spent 12hrs in that ER and had time to reflect on the fact that this is what my patients must feel when they come to the hospital for help. Feeling vulnerable and scared, with people they don’t know.
I had a hysterectomy years ago, just before I started nursing school. The doctors were so sure I had ovarian cancer, that they prepared me for aggressive chemo following surgery. The biopsy results came back negative. Before I got those results, I went through some of the same emotions as I did with this diagnosis, but I was blissfully ignorant of the medical world, and therefore not as aware of how much could go wrong. I was scared, but in some ways more trusting. Nurses who become patients are aware of things. They know the pressure on the medical staff to do things faster, spend more time on computer charting — checking off boxes and the emphasis on ‘patient satisfaction.’ They often work short staffed, leaving less time for patient care, including being an advocate for the patient. I was well aware of how easy it is to make serious mistakes under the conditions most hospital nurses work in. I admit I was afraid of getting a burned out, complacent nurse or a new one that may not know her limitations. For me, this was just as scary as the diagnosis of cancer. Knowing this also made me much more understanding of having long wait times for things — meds, appointments and tests. Before I was a nurse, I didn’t know enough to truly appreciate the hospital staff and all that they do and how they keep you alive.
It’s really hard to go from being the nurse (the care giver) to the patient needing care. Part of it is losing control (to an extent), and part of it is that it just doesn’t feel natural. As a nurse, I have some knowledge that is helpful in understanding what’s going on and how the medical world works. I was familiar and comfortable in a hospital setting. That’s a big plus, but sometimes I find there is a tendency by staff to assume you don’t need the same info or instructions as other patients, or they don’t want to offend you by telling you things they think you already know. But I was out of my element in the oncology maze, and needed information and guidance like any patient. I had never known or had a mesothelioma patient. One thing I found out is that a nurse needs a nurse like anyone else when in this situation. With anxiety, being in sensory overload, and at times medicated, it’s hard to think clearly for yourself, or to remember certain things. Before my surgery and at my lowest point medically, I had an ICU nurse friend that I had worked with for years come to my house to tell me if she thought I was being premature in making myself a DNR. As she looked at my labs and reports, and after assessing me, and with tears rolling down her face, she said, “No, I really don’t.” She stayed until midnight and helped me talk to my family about it. I desperately needed a nurse with a clear head to help me.
I know what it’s like as a nurse to have one for a patient. It can be intimidating, especially if they are watching and criticizing your every move, telling you how to do your job or complaining about everything. Now I know what it’s like to be on the other side. I make a point to not tell most of them that I’m a nurse for this reason, but somehow they almost always know. I purposely don’t watch them start my IVs, etc., and let them do their job and thank them for it.
I referred myself to MD Anderson Cancer Center (MDA) in Houston for a second opinion about three months after my diagnosis of peritoneal mesothelioma, after being told I was inoperable because my cancer was too far advanced and aggressive. The good news from MDA was that I was a ‘prime candidate’ for CRS/HIPEC surgery, and the bad news was that they found enlarged lymph nodes in my chest that might change that status. I stayed for a procedure where they biopsy the nodes by a bronchoscopy FNA. I was in a semi-sitting position while the nurse started my IV when I heard someone behind me talking to the doctor, and mentioned an LMA. I told them that I was not aware that I would be ‘tubed’ and we needed to make sure they had the right patient, etc. I thought I was calm, but I probably looked like a deer in the headlights. The doctor then explained that it was necessary due to those nodes being next to my aorta and that if not paralyzed, I might flinch and then, well … that would not be a fun day for any of us. I was fine with it, but then the nurse said (as a way of explaining my questions), “She used to be a nurse.” I was on medical leave from my nurse job, but … I mean, whaaat? She started pushing meds in my arm and I don’t remember anything past me saying, “I’m still a …!” I’m sure she didn’t mean to offend me, but I wondered if everybody would now think that way — ‘she used to be a nurse.’ I felt like a has-been.
I feel sure that nurse did not mean that the way it sounded. I was overly sensitive and already grieving the possibility of losing my career and/or my life. I’ve said and done things as a nurse that I wish I could take back. I’ve made mistakes. Being on the other side of patient care really does force you to see things differently. I have even more respect for all my fellow nurses and medical staff and I’m grateful to have been blessed to have great people taking care of me. I have a better understanding and compassion for what patients experience and what they need from us. I don’t know if or when I will go back to work as a nurse, but I’m renewing my license this month. Don’t write me off just yet. I’m now a cancer patient, but … I’m still a nurse.