Jane is a ten-year survivor of a very rare form of cancer Myelodysplastic Syndrome. She has enjoyed several exciting careers including a librarian, counselor, teacher, and writer. She loves to write about surviving cancer, overcoming hearing loss, and her hearing ear service dog, Sita.
It's the often-overlooked little details that make the most impact on a patient's trip to the cancer center.
I have been on the Patient Advisory Council for our local cancer center for several years. I was asked by the staff to be on it and felt privileged to join. I realized after I became a part of this inspiring group of cancer survivors that the people on the committee are fantastic, and all of them are fighters. They all have survived different kinds of cancer ranging from blood cancers, breast cancer and colon cancer.
Our volunteer work has been time-consuming and important since the medical foundation where the cancer center is housed is planning to build a much needed new cancer center.
The staff had asked me by e-mail to meet with the architects to go over details — I balked at first. I did not feel I had the energy for a two-day meeting and would be forced to miss the first couple of hours on the first day because I had a previous commitment I could not change. The vice president of development called me personally and persuaded me to attend. She explained that I would only miss the introductions and they really wanted me there.
There have been several meetings since then, and I have enjoyed all of them. The architectural firm and the hospital administration honestly wants input from the patients, as they told us we were the ones who used the center and know what is needed. One of my first suggestions was decent coffee in the waiting room.
Many of the people bringing the cancer patients to wait for several hours along with the patients. First, we go to get the blood work done. Then we are examined by the doctor. After that we have follow up treatment including chemo and /or injections, so we may go back and forth three times in one visit. Coffee and tea really help! A coffee machine was placed there within a few days, and I smiled as I heard people commenting on how much they liked it while waiting.
All of us on the committee explained how important easy access and parking is. Presently, there is a long walk to the cancer center and wheelchairs are unwieldy. Parking can take as long as 20 minutes, or more, because of how busy the valets are and the shortage of parking spaces. The hospital and architectural firm had already addressed this, but did not know how bad it was until we told them!
The leaders of the architectural firm also asked us what we would improve inside. The suggestions came hard and fast. I do not receive infusions personally, but I was shocked. I knew there were inside rooms with no windows and felt they were downright depressing. Every single room will have a window in the new center. To my surprise, the Wi-Fi does not work presently. Imagine four or five hours without Wi-Fi! The patients then informed the architect that televisions placed in the individual room only had one channel, and they would like a choice of programs. The cubicles just do not do the trick either, since they could hear what was going on in the next room, thus privacy walls show respect for the patient and family. All things the architects may not have heard of if actual patients did not address them.
I use the center weekly for shots and complained bitterly about the lab where they are administered. The same lab is also an entrance to all the doctors’ offices, so people are traipsing through from two different doors entering and exiting the room while we are getting our medicine! I explained with a hearing loss I can be startled when people come up behind me and this can make the shots more painful. Privacy is also important to me when receiving the shots in the stomach. I said honestly that the present system “sucks.” We were reassured that there would be private rooms. One of the administrators suggested curtains, while that was vetoed as being difficult to keep clean. We requested sliding glass doors.
I asked the staff in the laboratory what they would like, and they explained that the doorways to accommodate wheelchairs were too small. The new center will have a much wider doorways.
The architectural firm had some great ideas from previous projects that they also ran by us. They suggested having the laboratory on one floor and then an elevator to the examination rooms on the second floor for easy flow. The waiting rooms are planned to be circular all around the outside walls with tables and chairs so the family can wait. The assembly lines of chairs in the present waiting room are harsh and jarring as we walk in front of each other to sit down.
I found this new approach interesting, especially after I read that Starbucks has round tables in all its stores to be more inviting. The firm also showed us some interesting “tricks” such as placing a window or large picture at the end of a sterile hallway to make the hall look more inviting.
I was reluctant at first, but have found being on this committee a true learning experience. We are breaking ground in the spring and I could not be more excited. I am thrilled that the hospital administration, architectural firm and the patients are all working together to make this cancer center special.
It has occurred to me that planning this together is like life. It is the little things that count. If you have ever gotten a stone in your shoe, you know how huge this little irritation is until it is removed. We all know when we receive a compliment from someone how that can make our day. We also need a village to help us get through both cancer and life! Hopefully, by paying attention to the details and looking through the eyes of the patients, the big new cancer center will be patient-friendly.
My friends, always pay attention to the little details, work as a team, and then enjoy the results!