Lost In The Medical System

I have been at the same cancer center for six and a half years. My first oncologist saved my life, and then when she took a break from clinical care due to burnout caused by problems with management (hint, hint), another talented oncologist continued that excellent care. Over the years, the people providing my medical care from the doctors to the support staff, have become so important to me I invited them all to my wedding two years ago. Several showed up!

So, it breaks my heart to leave them for a different clinic, but I feel I have to because for the last several months I have been feeling lost in the medical system.

Feeling lost in the system has been taking away my hope. And hope is what helps keep me alive in this Stage IV cancer diagnosis.

For several years now, my health has been chugging along. I responded well to Kadcyla and tolerated the treatment well. No need to call in triage nurses, conundrums, or extra worries. Many months ago, though, I began to experience post-infusion reactions to Kadcyla – chills, fevers, elevated heart rate, faintness. Kick in the concern. Thus began the calls to the triage nurses and contacting the doctor, and thus began the very slow, almost annoyed responses from the nurses.

After a few months of frustration, I spoke to the doctor. I asked if her patient load was too high and expressed I was worried she would not have the time for my now more-complicated care. She listened with empathy, and she acknowledged her patient load was heavy (she is an excellent doctor). I saw evidence after our discussion of her working to not take on too many new patients.

Things got more complicated.

My latest scans showed a spot with increased uptake on my rib, plus my already-lowered platelets dropped even lower and were not recovering. More calls, more slow response. At this point, I was becoming increasingly concerned with my safety. Lowered platelets that don’t recover between treatments make things dicey, but what appear to be allergic reactions to the treatment are even scarier (think of things going toward anaphylaxis). Quick response to serious concerns are key to patient safety.

That’s when I realized what was happening had nothing to do with patient loads.

After some detective work, I realized what was happening was that the clinic was extremely short staffed in terms of nurses and was also losing support staff due to burnout. Management had been promising to fix this nursing shortage for a long time, but this was a problem that was not being fixed. Because of my time with the clinic, I had seen nurse practitioners come and go (two nurse practitioners quit on the same day at one point and that is very telling of a management issue). This shortage of nurses means the doctors and nurses become overworked, and support staff burn out having to handle regular duties, along with increased numbers of frantic patient calls like mine.

I am a vocal self-advocate, and I was losing hope in this lost in the medical system experience. What was happening to other, less vocal patients?

I considered staying; these people saved my life and my spirit. But after another experience of asking for help and feeling lost yet again, I had to face the fact that this was something that was going to take a while to set right. What I needed right here, right now in my increasingly complicated medical situation, was a doctor and nurses who responded on a timely basis.

I made an appointment with a new oncologist at another clinic that had a nurse practitioner ratio of one nurse for every two doctors, and I have since moved to that new clinic due to the presence of those nurse practitioners, along with the fact of the new oncologist’s competence. The new oncologist remarked during our appointment that no place was perfect, and she was right.

The new clinic has its own issues, which I’m quickly discovering. But as long as I can reach a triage nurse, nurse practitioner, or doctor and get the help I need, the rest I can work around.

I’m still not clear why the previous cancer clinic has not been doing more to hire much-needed nurse practitioners. I do know that because they were not on staff, I was lost in a medical system. That added to fears for my safety, sadness over the loss of folks I had come to value and a dangerous loss of hope in an already challenging metastatic cancer situation.

So, I’m off on a new journey that has its own challenges, I’m sure.  The one thing I hope that is true, though, is that when stuff hits the fan, I’ll at least be able to get through to someone who can help.

Because that sense of “we’ve got your back” is one of the most important things for anyone dealing with a dangerous, life-threatening medical situation.

Originally published via Nancy's Point as Metastatic Monday Featured Point 9/17/2018.