How to be the voice of many

commitment*note: except when it comes to providing chairs!

Being a lab rat at the factory, I have the luxury of being a professional cancer patient with a voice to speak for many. Since I have been in other clinical trials and visited many cancers centers especially in So Cal during the 4+ years, I feel that my observations are valid and true. What makes a difference to most cancer patients no matter where they are in the process of treatment is just a little compassion and kindness which goes a long way. This tiny bit of patient centered care is critical to the successful treatment of patients. This includes the staff at the desk when you sign in, the person who takes your blood pressure, the nurses, and any other staff a patient encounters. Last week, I had the opportunity to see an old friend who happens to be the chaplain at both the factory and closet. We laughed as usual and talked about the factory. Now, the factory has the reality of being the picture of what is happening in the world with the increase in the number of cancer patients to treat. I’ve talked before about the infusion center being “sold out” and unable to make an appointment as if I am getting my hair done instead of chemo. There is a fine line of how to treat and care for the growing population of cancer patients while focusing on the individual. UCLA Westwood does have that balance with the nurses taking the extra moments listening, advising, and caring for each patient. The problem with this care is that this often creates delays for other patients. I’m sure this is a difficult thing to manage, but cancer patients require a different type of care. I know moods and attitudes can change the overall health of a patient. A slight pain becomes sharp and unbearable. A slight concern turns into a crisis. A bit of worry turns into a tearful panic attack. Small efforts can make a huge difference. I know I have complained about the loaded question of, “how are you feeling?” When no one asks, it seems that no one cares. I received a call from the factory supervisor. She completely understood what I was saying and assured me that things will change. At first, she questioned my concern regarding the level of care I was getting. This is a puzzling area as I am getting excellent medical care, but missing the human care. She laughed at the way I explained the factory to her even using the words factory and processing.
This brings me to yesterday. After a very long drive on the 405 with 5 accidents. A drive to UCLA is never easy or simple. Plus, in Santa Monica there is the added search and hunt for parking. Jim dropped me off. I entered the waiting area which holds about 50 people and it was full. The level of anxiety was high and faces were filled with worry and concern. Caregivers were checking watches and making comments. I walked to the sign in desk where 3 people sat head down and not one looked up, acknowledged me (or anyone else), and  no words were said by the head downers. I waited a full minute watching the clock tick passed each second hand. I also used the harsh stare as if they could possibly feel my glaring eyes. I gave up and decided to use the restroom in case I was in the DOD (door of death) room as I refused to use that bathroom. When I returned, I noticed the energy hadn’t changed. In fact, the anxiety level had increased and was almost palpable. I decided to keep smiling and tried to make some eye contact. Somehow, I was called and taken back to the standing room only room. My guide explained the sell out crowd. I added it must be a 2fer day or I should have been informed to BYOC (bring my own chair). I scanned the room with a choice of a chair facing the wall and a nicer pod. There was a group of family with a ghostly patient behind me in a wheelchair. I decided to give them the better chair. While I sat, I noticed the energy in this room was even worse. Not one nurse smiling or making eye contact. A nurse in front of me was committing the violation unheard of in Westwood which is using the stool with wheels to wheel herself from patient to patient. Of course, my first thought was that she had an injury which prevented her from standing. Nurses were talking way too loud and yes, most patients weren’t focused on this, but I overheard one nurse say she was going to lose it. I was still trying to figure out who my nurse was. Finally, I caught one nurse smiling and making eye contact.  It was a crazy circus like atmosphere, but not in a positive way. Nurses were huddled behind their station as if they were going to catch something from one of the patients. My nurse arrived on wheels (rolling from the nurses station to my wall facing chair and I had a flash of the movie Wall-e with people on those floating chairs) and never introduced herself, never explained what she was doing. I knew what she was doing, but that wasn’t the point. I asked her what she was doing and explained that I have been doing this for 4 plus years and I like to know what is happening. Her answer was, “I’ve been doing this for 25 years.” Next, she was careless and blood started spraying my chair from my accessed line. She wiped some of it off. I wiped the rest off while waiting. I kept asking questions and asked what tests were ordered. She told me and I responded that one was missing. Wheeling back to the station, she seemed to be having a really bad day or maybe this was the way she “rolls”. I continued to scan the room seeing more patients searching for nurses, caregivers searching for lunch options, and nurses grumbling about everything until I heard them get on the phone to order their lunch. (Were they all on break?) Now, I waited for my results, but could not find the clinical trial person or the doc or my rolling nurse. I made eye contact with a person standing at the nurses station who approached me and happened to be the factory supervisor. I explained the various situations including my circus act rolling nurse. Her jaw dropped and she grabbed my hand and smiled. She promised she would add my new observations to her email which would be sent to higher factory management. I did remind her of the one smiling nurse. I was left to more waiting until I finally interrupted my rolling nurse before I saw her ordering her own lunch which was obviously a big priority. She told me I need to wait for the doctor in a tone which she was saying, “shut up and sit down at your wall facing chair.” At this point, Jim had finished his call and was now standing beside me since there weren’t any chairs to sit. He questioned what was taking so long and the clinical trial person asked, “still feeling the same? Any problems? Okay see you next week.” I was not sure if she wanted the truth, so I answered with a “yes” and “no”. The factory visit was concluded and hoped secretly that my comments could change this factory into a more patient focused factory. I know it would make a difference. I laughed as I read the sign in the factory about commitment.

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