My previous post talked about how communication needs to improve between healthcare providers, parents, and adolescents. Today I want to continue on the topic of communication. As an AYA cancer patient diagnosed with pediatric and wildtype gastrointestinal stromal tumor (GIST) and just a young adult in general, I quickly learned that our communication skills decline. I’m unsure if it’s because of social media and we learned to hide behind screens, or the fact that newer generations of parents adhere to the  “sit their child in front of the iPad at dinner” type of parenting. 

My primary care physician and oncologist taught me if I had an emergency to go to the hospital nearest to me and that I could still go to the hospital for children because that is where my medical team is based. In 2018-2019, I was on a clinical trial, which made me more susceptible to getting sick and required me to fly back and forth from Hawaii and Maryland once a month. During this time, I contracted the Swine Flu (H1N1), which resulted in me needing to go to the emergency room and an ICU stay. 

The hospital stay itself was OK; however, I did have a problem with some of the staff that wasn’t directly on my medical team but on my oncologist’s team (at least that is what she told me). The last few days before I got discharged, a nurse from my oncologist’s office told me I could no longer come to this hospital for emergencies. The hospital I go to is a women’s and children’s hospital, so it made no sense. I had expressed this to my oncologist a few days after being discharged, and he and his other staff members had no idea this nurse had said this to me. They had told me as long as I am still seeing my oncologist, I can continue coming to that hospital for emergencies.

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Communication Lacking on Many Levels

I also observed that communication between different doctors just doesn’t happen. I’m not sure if it is an ego thing or just the fact that everyone is so busy. But everyone was unaware of what was said to me, and that should not be happening. It turns out it was my pediatrician at the time who said I could no longer come to that hospital anymore.

When I got admitted to the hospital for H1N1, I got admitted to the ICU since they couldn’t keep my blood pressure or heart rate down, and I was septic. I had a central line, an a-line, and two IVs put into place, which means I was getting a lot of fluids put into my body. I wasn’t allowed to leave the hospital bed and was required to use a bedpan, which was already embarrassing as it is. Being pumped with fluids meant I needed to use the restroom every 30-45 minutes and being on bed rest, I couldn’t get up to use the bathroom, which meant; I needed to wait for a nurse to come every time I needed to go. 

The first time I hit the call button, a nurse came to help quickly. The second and third time, I noticed they began taking their time. I ended up wetting myself many times during this hospital stay, and it was so embarrassing. At one point, a nurse had even told me, “if you need to go, just go; that’s why the pee pad is under you.” This blew my mind. Just because a layer of protection is put between a patient and the bed, that is not a reason to tell the patient “to just go.” I felt as if I was an animal.

I have been a cancer patient since 2013. I have been in and out of the hospital multiple times, whether it was cancer-related or due to other illnesses. I experience a constant issue with hospital stays because of the awful amount of time it takes someone to come and help after pressing the call button and asking for the restroom or just for help in general. Whether it’s a bedpan or getting the help to get out of bed and pulling the IV pole along to the bathroom, I noticed it could take up to an hour for someone to come. Understandably, there are emergencies that happen, but I noticed it is a common theme that the nurses had to take up to an hour to come, and by then, it is too late.

I had experienced this with every hospital stay without fail. I’ve been admitted to 4 different hospitals on the island, and it is very common that patients end up needing to wait long periods to use the restroom or end up having an accident. It’s hard enough to be in and out of the hospitals with a rare disease and vulnerable to doctors and nurses. It is embarrassing when you need to use the restroom, and someone doesn’t come fast enough, and an accident happens. I know there are always so many people in and out of the hospital and many patients for nurses to care for, but if I could pick one thing to help patients feel more comfortable, it would be when they have to use the bathroom.

I know this may seem like such a minor issue but, sometimes it is the small things that help save a patient’s dignity and give them a little peace of mind.