For Urology Nurses and Associates Week, (November 1-7) at BCAN we are highlighting a few nurses making a difference in the lives of people with bladder cancer.
Joanna Burgess, RN, BSN, CWOCN, CMLDT
How did you decide to become a nurse in this field?
I always knew that I wanted to be a nurse since I was a very young girl. I had an elaborate hospital set up in the basement and all my stuffed animals and dolls took turns being patients. This most likely stemmed from my own experience with bladder cancer at the age of three. My treatment included surgery for an ileal conduit, radiation therapy and chemotherapy. I fulfilled that dream of becoming a nurse in 1985, graduating from West Virginia Wesleyan College. It would be one little boy on the pediatric floor where I was working in 1986 who would spark my interest in helping others get through bladder cancer. He was three years old and I watched as he and his family struggled through all of the challenges that I had faced at the very same age. I could see what a difference sharing my story made in their lives – especially in knowing that they were not alone. After spending years counseling and advocating for patients I became a wound, ostomy, and continence nurse (WOCN) in 2006. I love knowing that my story and now my expertise can make such a difference in the lives of those facing bladder cancer. I believe it is healing for my patients but also healing for me.
What are the biggest challenges of your job?
My patients are facing life altering / body altering surgery. Their bladder cancer has resulted in a cystectomy (removal of the bladder). However, most patients realize that removal of a cancerous bladder is life saving and that realization motivates them to learn how to adapt to life with an ostomy. The only way that a patient can move forward in life is to have a successful experience with their pouching system. If the system fails in the hospital, anxiety increases as to what this will be like to care for at home. If the system fails at home causing constant leakages and painful skin, patients begin to feel helpless and hopeless that they can resume a happy life. My job is to create success in the hospital by evaluating and re-evaluating the patient’s abdomen and pouching system. Creating success for a patient is not always easy and it often takes much trial and error. Not until a patient is comfortable with the physical needs of a pouching system, can they move forward with the emotional healing from having had bladder cancer.
Staff nurses also need ongoing support and education concerning caring for someone with a new ostomy. Often, due to lack of experience, they are neither comfortable with taking care of an ostomy pouch nor are they familiar with ostomy products. For my patients to have a successful inpatient experience, I must provide ongoing reinforcement of education and keep the staff updated on the proper use of ostomy products.
What is most rewarding about this work?
I love watching the transformation of a patient who is initially fearful and apprehensive about how they can possibly learn to live a “normal” life into someone who is counseling and encouraging others to live life fully and with gusto. It is a profoundly rewarding experience to see the strength of the human spirit overcome the physical and emotional challenges that we all face in life from difficult life experiences such as bladder cancer.
In your opinion what are the biggest needs in bladder cancer?
Ongoing research of course is very important for advancements in treatment and toward a cure for bladder cancer. Mentorship is also important for making patients aware of others who have faced or are facing situations similar to their own. I remember as a little girl feeling so alone – certain that no one else in the whole world had been through what I had been through. I have been involved with the UOAA (United Ostomy Association of America) and our local BCAN (Bladder Cancer Advocacy Network) support groups. Patients helping and supporting each other in a caring environment – in person and online can move someone from despair to hope. Many online support groups can be found through the Inspire network of online health and wellness support communities. Support groups are often a life line for many people, and nurses should offer these resources to their patients and encourage participation. There is no reason why any patient should feel alone in this experience. The first time I visited our local BCAN support group as a guest speaker, I realized that although I was far from the date of my original diagnosis and treatment in 1965 – I felt like I was coming home to the welcome arms of those who have traveled and are currently traveling down similar paths. That experience has extended to the mountains of North Carolina where one special bladder cancer survivor coordinates a picnic at a high mountain retreat for people experiencing all stages of bladder cancer. This yearly event has become so meaningful that people come from all over the country. For me, these encounters continue to heal that three year old little girl who felt so alone – an important need shared by most bladder cancer survivors.
What can be done to raise awareness about bladder cancer?
I believe that through the vastness of social media awareness of bladder cancer can be expanded and accelerated. Through social media – especially what I have experienced through online support groups, there is much more talk and sharing about the bladder cancer experience. It is reducing the stigma that bladder cancer is only a smoker’s disease. We who work with it, talk about it and are personally affected by it know that bladder cancer affects both men and woman in all phases of life and health, and although rare it can even affect children. I applaud BCAN for all they do to raise awareness about bladder cancer and to encourage people to raise money for research through walks and other fund raising efforts. I also applaud their annual think tank – a gathering of scientists, doctors, surgeons and patients who brainstorm about all manner of things important to bladder cancer patients and survivors. There is energy behind all of this that stirs and strengthens the growing awareness of bladder cancer.