Brian, who was diagnosed with bladder cancer at age 39, was able to find empowerment in the experience by researching the disease, and positivity by connecting to others in online forums that were going through similar experiences.
I was diagnosed with bladder cancer in 2003, and it was a pivotal time for me. I had moved to New York City from London just after 9/11 and was still adrift: I’d ended a long-term relationship against my will, had insecurity around my work, and was dealing with low self esteem, among other things. The diagnosis prompted me to get my act together. Tackling cancer gave me purpose, direction, and improved my self esteem. I had been feeling victimized and weak, and then was given the choice to continue being victimized or to attack it. It changed my life.
With bladder cancer, there’s one symptom: blood in the urine. Out of the blue, I was peeing red. I was working at the time, but dropped everything, went to the doctor and had a test on a Thursday, saw a specialist on Friday, had the results on Monday, they took a look inside my bladder on Tuesday, which showed a tumor, and removed it then and there.
Seeing Red
The doctor told me I was lucky to have a symptom, as many men don’t and therefore don’t know to do anything. It was Stage 1 and still superficial at that point, but the most aggressive type of tumor, the highest grade. The surgery was easy, there were no incisions, it was done through a catheter in the urethra. They gave me a single dose of chemotherapy (mitomycin) right after the removal of the tumor. I spent one night in the hospital and was out within 48 hours. Then I started intravesical immunotherapy right away. Compared to chemotherapy it is a relatively non-invasive treatment that involves having a liquid (BCG) injected into the bladder that you have to retain for 30-45 minutes. It burns like hell when you pee it out, and made me kind of ill for 24 hours, but I tolerated it well.
Initially I did it weekly for 8 weeks, and continued for eight years at decreasing intervals, and now I just have an annual cystoscopy with biopsies and a bi-annual MRI scan. I was extremely lucky that it was a brief bout; I got treated and have had no recurrence.
Seeing the blood in the urine was scary. When I saw the specialist, my urine was clear, so the doctor told me it was probably nothing, I was too young for cancer, but should investigate further. That was scary, too.
Bring a Friend for Bad News
When I scheduled an appointment to hear the results of the cystoscopy, they told me to bring a friend to help me hear the news; if it’s bad, many people get stunned and don’t hear the rest of it. When the doctor said, “It is cancer and I removed the tumor,” I shut down emotionally. I got very pragmatic, “OK, what do we need to do?” But it was a form of emotional coping; I couldn’t process all of it, so stayed in that mode: this is a project and needs to be attacked. With experts to help me, I’ll just do what they tell me. I don’t remember ever feeling the trauma of it.
Responding to stress with action was part of my life. I grew up in Northern Ireland in war zone during the struggles there, went to boarding school and was away from home from the age of 11. My father’s shop was bombed three times and people I knew died; but that was normal, that was all we knew, and it prepared me for the “right, now go” attitude. During my whole childhood, I learned to shut down emotionally; I just had to cope. Being at boarding school made me very self-reliant and independent; it was a harsh Northern Irish boarding school with a lot of bullying and physical punishment. I had no parental nurturing there and developed those coping skills very early on.
A Job to Do
I couldn’t sit back and wait for the cancer to do its thing, I had to do my job; research and information is how I make my living, so it made sense I would do it here.
As the months went on, I did a lot of reading and research, and joined an online support group. I didn’t have an opportunity to choose my oncologist, as it had all happened so fast, but I chose to stay with mine. I trusted him, I knew he was a good surgeon, although he wasn’t the most up to date person. This empowered me; I was always bringing in papers and research and questioning him, and I became a bit of an expert, which was a psychological benefit. It gave me a sense of control in an uncontrollable situation.
There were times that I needed support; I had started seeing a therapist when I first got to New York, so I had that as a resource in the background of what I was dealing with. Then I found a fantastic online support group set up by a woman in Holland whose sister had bladder cancer, and she was a lay expert in the disease. I got the impression there was a small group of regular users on the site; everyone genuinely seemed supportive of each other. I stayed on that long after the initial stages of the disease as I found it incredibly reassuring to be in touch with others going through the same thing. I became very bonded to the people in the group and offered advice, support, and the research I had read and learned from others.
Always Checking
I dreaded telling my parents who were so far away. My work was unstable, I was single, among other things. I was most concerned about their inability to help, and the anxiety that would create. At the time I wasn’t aware of any family history of cancer, other than one uncle who had had prostate cancer. But six months after my own diagnosis, doctors diagnosed my mother with gallbladder cancer that metastasized to her liver. It was very aggressive and quick, and she died six months later. Subsequently other relations (all elderly) have been diagnosed with cancer and died.
It’s been 13 years since I’ve had symptoms, but I recently had blood in the urine again, so I went straight to the doctor for some tests, and will be going in for another cystoscopy. There is some residual anxiety; I never pee without looking. But, I had a lucky encounter with cancer and was much more resilient that I thought; more competent and stronger than I thought; it was a positive experience.