Lots of Questions and No One to Talk To

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By Sylvia L. Ramsey

By the time my husband was diagnosed with prostate cancer and I with bladder cancer, we had already had our share of difficulties. Losing my husband's income and treating his chronic obstructive pulmonary disease (COPD) over the years stripped us financially. We had invested in our retirement, owned a home and had done all the right things. Every bit of it had been used to keep him alive, and now we were living on what I could make.

When we got two cancer diagnoses on the same day, questions raced through my mind:

• Who would take care of my husband if something happened to me?
• Will my insurance pay for my treatment, and if not, how will it get paid?
• Will I be able to work again?
• Will I be fired?
• Who will be there to take care of both of us while we go through this?
• What does it mean to have bladder cancer?
• What are the treatments?
• Is there a life after treatment or is this a death sentence?

I had so many questions but no answers and no idea where to find answers.

As soon as I got home, I began searching the Internet. Information at that time was not as easily found as it is today. There was very little about women and bladder cancer. What I did find was scary. I finally ran across a referral to the National Cancer Institute (NCI) that provided an 800 telephone number to request literature. I called and they said they would send a packet. When the packet arrived, I read all the pamphlets and brochures. It was all frightening. I wanted to talk with someone who had gone through it.

I finally found a chat group called Glenna's Garden. It was general cancer support group. I did not find another female with bladder cancer at that time, but I found some wonderful friends who were coping with cancer. Many were in terminal stages. They were all so brave. One was a man named Les who had lung cancer. He had the most positive outlook on life and inspired the entire group to be brave and to enjoy every minute of life. There were two young teens who had cancer, and they were inspirations as well. By the time I went for my imaging tests, I knew a lot more than I had before, and I had discovered that there was no bladder cancer support group.

I gained enough courage to tell my boss that I had cancer and more than likely would need a leave of absence for treatment. I felt as if I had just announced I had leprosy. He wanted details and dates. I could not give them to him because I did not know yet. He was kind, but it was obvious that my announcement was not going to help my career, even if things turned out well. The NCI had sent a pamphlet on worker rights for cancer patients, which made me feel a little better.

I told my coworkers and my staff. I quickly noticed that they began avoiding me. I felt as if I had some contagious disease they would all catch if they interacted with me. I tried to talk to some of my coworkers about cancer, but they would change the subject.

Interestingly, my friends and family avoided discussing it as well. It was as if my diagnosis was a shameful, dark, unspeakable secret. I could not pour out my soul to my husband because stress worsened his condition. I could discuss our diagnoses and treatments on a surface level, but that was all. Thank heavens for the online chat room. That was the only place I could share my fears and learn to laugh at myself with other people.

I also turned to writing. I have written since I was a child, but I began to write furiously after my diagnosis. I wrote poems and short stories and began a novel. My writing was a way to express my feelings about life and living. It provided a vehicle to express my hopes, fears and frustrations. It let me get to know me. It was a journey of discovery. Even today, writing is my best mode of expressing the person that is me.

I have learned that others perceive me as being a very self-sufficient, confident person with high self-esteem. I only wish the real me was all that I am perceived to be. Inside I am just as scared and unsure as the next person.

Check back here to read about Sylvia's surgery. Plus, read more of her story on HealthyWomen.org:
Two Diagnoses, One Couple, One Day: Could it be Possible?
Living With Bladder Cancer

Learn more about bladder cancer and about Sylvia L. Ramsey, cancer survivor, advocate, author and public speaker, at: www.bladdercancersupport.org, www.authorsden.com/sylvialramsey1.