When I received my diagnosis of cancer, time stood still. I was overcome with many emotions, the most prevalent one being fear. Cancer is not a word anyone wants to hear, but it is something to which we can all relate because many families are touched by it. Most of us, if not all, know someone who has been affected. When I was diagnosed with bladder cancer in 2019, I went through all the stages of grief typical for patients with cancer. When I went to the urologist for my first cystoscopy, after a mass was found during a gynecologic ultrasound, I went alone. I was in total denial. I did not want to think about even the possibility of cancer. I had just been given the surprise of a lifetime: my son and his wife were expecting our first grandchild and I wanted to focus on that. However, I soon found out that the mass I had was cancer. Denial was quickly replaced by anger. I felt like my cancer had stolen what should have been a purely joyful time.
I also had a major crisis of faith. I do not remember bargaining but I had a deep longing to be there for the birth of my grandson. I cried ... a lot. I could not talk about the future without crying, especially when I thought about the possibility of having a urostomy, which I hoped would not be needed. I developed shingles, I believe, from the stress. I was worried about chemotherapy, losing my hair, and how much time I had left. With the support of my family and friends who were with me throughout my treatment, I was able to cope with each aspect of therapy as it was presented to me.
Unfortunately, the immunotherapy I received failed, and it was recommended that I follow-up with what I was told was “the gold standard of care” for bladder cancer–a radical cystectomy. Because of the proximity of the tumor, I did not qualify for a continent diversion and had to settle for an ileal conduit, which would mean having to wear an external pouch. This was my worst nightmare. For me, finding out I was going to wear a pouch was far more devastating than the news of the cancer itself. I had no point of reference; I had never heard of an ostomy before the diagnosis of bladder cancer.
My imagination was in overdrive. My original urologist referred to me needing a “bag” after my bladder removal. What? I would spend the rest of my life with a “bag” of pee hanging from my belly? What kind of “bag”? How big? What if the “bag” broke? If you have ever seen the movie The Shining, you might remember the scene in which the elevator doors open and a torrent of blood rushes out. I envisioned torrents of urine soaking my clothes while I was out in public. I am a high school teacher, and I was afraid of this happening in front of a class of students. I thought I would be a freak. Although they tried to be there for me, my friends and family could not help me with these feelings. While everyone was extremely supportive, no one I knew had an ostomy. I had no one I could talk to about their experience. I was on my own and I was scared. It was not until I started working with my ostomy team that I was able to come to terms with my ostomy and my future.
I was fortunate to participate in the Brigham and Women’s Cystectomy Pre-Habilitation class prior to my surgery. There, I was able to meet the ostomy nurses who would be helping me after my surgery. This one-and-a-half-hour course teaches patients what to expect before surgery, during recovery, and after discharge. Participants are provided with the prosthetic pouching supplies they will be using after their surgery. I was able to become familiar with the supplies and even practice with them. As a teacher, I believe knowledge is power. So much of my fear was of the unknown! This was the first time I handled, or even saw, ostomy supplies.
Being able to practice with the various products allowed me to be proactive and feel less helpless. I was able to ask questions and was provided with some tremendously helpful advice. This personal connection eased some of the anxiety I was feeling. I knew I could turn to the nurses with my questions, and this is something I continue to do. Because of this experience, and with the support of these ostomy nurses, I had a better understanding of what to expect and more confidence in my ability to be able to handle things like changing my pouch independently. These ostomy nurses were my first mentors on this journey.
My medical team also gave me information about the Bladder Cancer Advocacy Network (BCAN), a support network for patients with bladder cancer. It was there that I discovered a treasure trove of information for people facing bladder cancer. I was pointed in the direction of their program, “Survivor to Survivor,” which matches a patient with a new diagnosis to a mentor who has faced a similar diagnosis and surgery. After signing up for the program, and prior to my surgery, I was able to talk to a volunteer who had been through the same surgery I was now facing. They gave me an idea of what to expect from the surgery and after. They shared advice about living with an ostomy. They gave me tips about everything from how to recover from surgery to helpful supplies to keep on hand for changing my pouch. I have since become a patient mentor and have had a chance to guide and help others facing radical cystectomy with an ileal conduit because of bladder cancer.
Another service that helped me learn how to live with my urostomy was the Brigham Ostomy Peer Visitor Program, much like the United Ostomy Associations of America (UOAA) Certified Visitor Training Program. While recovering in the hospital, I was visited by a specially trained volunteer who had a urostomy. It was the first time I was able to meet someone with a urostomy in person. I was heartened by how “normal” they looked. She answered all my questions and gave me hope.
I want to emphasize how important it is to have ongoing access to certified ostomy nurses. When I was first released from the hospital, I was provided Visiting Nurses Association services, a type of home health nursing. I was fortunate to have a visiting nurse who was also a certified ostomy nurse. I also had continued access to the Brigham and Women’s ostomy nurses through their outpatient ostomy clinic. After surgery, I developed several skin issues, and it took the expertise of all my nurses working with me over the course of a year to find a pouching system that worked for me.
Patients facing radical cystectomies and other life-changing surgeries often do not know what questions to ask. Questions do not arise until something untoward happens, such as continuous leaks or skin problems. Not knowing what to do is an overwhelming feeling. This is when dejection and depression set in. The role of the ostomy nurse in providing the necessary support and mentorship is key when seeking answers to questions and solutions to problems.
The final stage of grief is acceptance. Not only have I accepted my life with a urostomy, but I have also embraced it. I have joined UOAA and BCAN and am paying forward all the help I received by sharing my experiences, mentoring, and being involved with patient advocacy. I am doing everything I did before my diagnosis and urostomy–and even more. I still enjoy teaching and have not had a flood in my class! I also travel, swim, paddleboard, and hike. Most importantly, I have an even closer relationship with my husband and, together, we experienced the birth of our grandson!
There is a popular saying that “It takes a village” to face and solve difficulties. I have found this to be true on my journey. As a result of my “village,” that is, the support of my ostomy team, other people with an ostomy, and organizations such as UOAA and BCAN, I am cancer free 2 years after my surgery. Not only am I living a fulfilling life, but I am living my best life.