Do Your Job

As anyone who has dealt with their own or a loved ones medical emergency can attest to, sometimes you feel like your job is to make sure other people do their job. There were days I seriously just wanted to scream DO YOUR JOB so I didn’t have to. I have said that I was provided a nurse navigator through my health network system. There were times I could not imagine navigating this process without her. Once the process kept going, she was sort of a last resort to get done what I needed to when I was not able to get things moving. If you don’t have a navigator, as most people do not even though they are becoming more prominent in this sort of setting, it all falls on you and can be even more frustrating. This is where having a notebook, a planner, and a support system buddy at your appointments can really be helpful. You will need to be your own advocate and push people to get done what you need to in whatever time frame is necessary in your situation.

If you are lucky, you have a great nurse in the office who is on top of things and does not rest until each and every action item is completed each day. Depending on how your doctor’s office is managed and your nurse’s workload, this may be totally impractical. I was very fortunate that my nurse when my experience began was beyond on top of things plus I had my navigator to ensure things were done. Unfortunately, about the time my SVC Syndrome was diagnosed and I was hospitalized, my nurse left to care for the inpatient oncology unit. I did get to see her there, unfortunately, but I couldn’t talk her into coming back to the office to take care of me. As there is with any transition, the nurse who replaced her came in while I was already in treatment and there were some issues. I am not sure what her experience was to this point, and I have no doubt that she is good at her job and an intelligent person, however, there were issues that just did not sit well with me. It became a prime example of feeling like my job was to make sure someone else was doing their job.

Everyone has to deal with simple things that are frustrating, but not hugely consequential. Making sure you leave the office with the scripts for bloodwork. Calling them when your tests need to be scheduled and they still haven’t called you.

In one instance, the morning I went to receive my chemotherapy infusion I wrote about in this post and I had a rash on my face, the nurse in the infusion center sent an electronic message to the office nurse to get the okay to give me the treatment and double checking that they were aware of the rash. The nurse returned an electronic message, in my chart/file, that the rash was because I had been taken off oral acne medication. Of course, the infusion nurse was like, “um, hey there That Girl, you could have just told me that.” The only problem was, I was never in my life on oral acne medication. Nor was there any listed in my chart that she had open in order to respond to the message. This went back and forth for days. The next reason was it was a result of a new medication I had started. Well, when I had called the office to ask about the new medication another doctor had prescribed I was still awaiting a response before I started it and she had not gotten back to me so having not started the medicine and it was still sitting at the pharmacy, I had a hard time believing her on that one as well. In both of these instances I literally had to confirm with someone that I wasn’t losing my mind and I was in fact correct so having that buddy and notebook to record all of this was helpful.

In talking to the infusion nurse, who was a real hoot by the way each and every time I was able to see her, we discussed this oopsie that happened. She asked if I had told them, I said of course, but the nurse had said to call if it got worse. Since the rash was on my eyes, it looked a stye. Apparently styes can be quite dangerous so when I had called the office nurse had, over the phone mind you, diagnosed it as a clogged tear duct. I had asked for an appointment but she didn’t think there was a need for one. This had happened before. So often, we kind of started calling her a gatekeeper. I kind of thought it was an actual part of her job to determine, triage even, over the phone who needs to be seen. Apparently, not so much or if so, she wasn’t quite letting me through when she should have been.

Another day I had called for a prescription refill. When a nurse called me back some time later she was insistent that the prescription was not from their office. Having it right in front of me I could read her the information and confirm that it was. She had a very hard time believing me. Whether she was learning a new computer system or what the problem was, I am not really sure, but she blamed it on the fact that a nurse practitioner from the office had prescribed it so it wouldn’t show up. In another instance, somehow she switched all my prescriptions from her office to be mail order without my consent which caused a major delay when I was due for refills. That was resolved with the help of the pharmacy and insurance company in addition to the oncologist’s office.

The most concerning lessons that taught me you really need to be your own best advocate happened at the infusion center during the second group of chemotherapy drugs. I was getting fairly literate and comfortable with the routine and I knew which pre-meds went with what treatment and the order and timing of everything. When the infusion center nurse was ready to start an IV of chemotherapy drugs, I called her attention to the fact that I had not yet received my pre-meds. She checked the plan and they were not listed. I insisted she call up to the office to check as both That Guy and I were certain that I had received them each and every other time to this point. As it turned out, the office nurse has put them in the wrong place in the computer system. Each one blamed the other thinking they were right. Who cares who is right? Someone was not right and can you imagine any person who is overwhelmed with their treatment and does not have that buddy to help keep track trying to remember all this? Especially if they are older and have memory issues to begin with then add on the exhaustion and side effects?

After a bunch of these events happened, I contacted my nurse navigator on advice on how to proceed. There were other incidents that contributed to it, but I was losing faith in my nurse and had a hard time trusting that the office was really on top of my care. And this was coming on the heels of the SVC Syndrome symptoms I had experienced for quite a while before being diagnosed after passing out. I was shaken to say the least. My navigator took control and looked into it for me. For some incidents, there was no explanation available to be tracked down. My doctor also called to assure me that they were just a series of coincidences that were just bad luck and the team was on top of things.

A less serious but more painful example where I should have really advocated for myself more also happened in the infusion center. It was a few weeks after my surgery and I had an infusion scheduled in addition to several appointments. I will go into more detail about this day, as it really was the kick off to a seriously awful week of bad luck of treatment experiences ending in me pretty much stomping out of the hospital cursing under my breath, but for now I will give you the brief version. I am without a port and down to one arm for blood draws and infusions. That means that when I have multiple things scheduled in one day or a few days or sometimes a few weeks, I start to run out of veins for them to use between my wrist and my elbow. I also have itty bitty baby veins I am told. There is one good bugger they can easily access for blood draws but for peripheral IVs it is kind of a shit show some days. This particular day I knew from the get go I was in trouble. It was my nurses first day or week in this position and of course she did not want to listen when I said I was a tough stick and I have been told to let them know so they can get one of the “get it on the first time” people.  And let me tell you, once you tell them that some of the “get it on the first time people” can’t even get it, they generally back away from you and find (I Dream of) Jeannie. Seriously. Well, this lady must not have understood. She tried. And tried again. And then tried again. Then she got her partner for that day. I told her I was a tough one to get. And she tried. And tried again. Before telling me I really need to let them know I’m really a tough stick for real. Um, so didn’t know that just saying it wasn’t enough. Then she said she would get me Jeannie. Seriously, I DREAM OF JEANNIE. Easy peasy lemon squeezie the IV was in and that torture was over. Lesson learned. Now when I sit down before I even say hello to the nurse when they come over to greet me I say I am a tough stick and I am told to ask for Jeannie. If and when Jeannie is not there, I ask for either of another two nurses. When they question me, I explain that after five sticks and 90 minutes I was told that I am to ask for her. One person has tried since then without grabbing one of my go-to’s and luckily she got me on the first try. Learn names and be clear about what you expect from your care team.

My oncologist told me I am very different than most of his patients. I was not sure what that meant, and I am still not sure it is a complement, but he went on to say it was because I come in with a notebook of questions, I do my own research, and I use some of the social media sources for information for what is new in the realm of breast cancer. Apparently most patients walk in and just do whatever he says. I don’t know how or why, but they don’t feel the need to be an active participant. That just isn’t my personality. If I understand something and the why’s and how’s, I find it less stressful. To get to that point, I ask a lot of questions and get active in my appointments. Apparently my notebook is somewhat of a legend amongst the care team. They tease me when I only have a couple questions. I just can’t imagine handling this the other way. The doctor explained that some people find it easier to just do it and not think too much about it all.

Do not take any of this to mean if there is a mistake on the part of the medical team, it is the patient’s fault. It is not. The care team is expected to be the professional and provide a professional standard of care. It would be wrong to state otherwise. However, you are your own best expert. Trust your instinct. Ask questions. Keep notes to refer back to so you can check if something that is routine doesn’t seem quite right. If you find it all too overwhelming, which is very reasonable, have someone you trust be your buddy to do it for you. Unfortunately, while you are going through any medical crisis, it is your job to get better and part of that is to be an active part of your care team.