submitted by: Sara G., Little Rock, AR
Intro/About:
“My grandkids call me ‘Twinkle,’ and I am a 63-year-old retired teacher who now enjoys gardening, reading, and my cats. I have two adult sons and one husband, to whom I have been married for 40 years. In my life, I enjoyed teaching, delicious food, and traveling. I have now been dealing with bladder cancer for over ten years.”
How did bladder cancer enter your life?
“For me, I knew something was wrong when I could not stop peeing. After a few weeks of constant bathroom trips, the intense burning began. I quickly managed a doctor’s appointment, and he gave me some antibiotics for a “suspected urinary tract infection.” After a few days of zero improvement, I called back and was given a different antibiotic to try. Still no changes, and my symptoms were worsening, as I was peeing even more. I made another appointment at the office I go to, but with a different doctor. This doctor told me to try cranberry juice. I was beginning to feel lost and sort of crazy. At this point, I asked to be referred to a specialist, which seemed to anger the doctor- who clearly did not agree.
Needless to say, the cranberry juice did nothing, and the searing pain with each bathroom trip was more than I could handle. I saw a local urologist a few days later, who immediately began a rigorous testing schedule of ultrasounds, PET scans, and an MRI. While all this was happening, I was still peeing constantly.
One of the worst tests I had done was when I was sent in for a bladder flow test, which at first sounds like a simple deal. Wrong. This test had me strapped to a table and turned upside down. Yes, upside down- you read that right. During this test was the first time I had accidentally wet my pants since after the birth of my second child nearly 40 years before. I was so embarrassed and mortified.
The results of this test sparked some interesting questions from my doctor- like if I had been out of the country recently or swam in any open or stagnant bodies of water. He called me into his office and explained that I was to be admitted into the hospital that same day for further testing.
I vaguely remember heading home to pack my hospital bag, rearrange my schedules and let my family know I was going into the hospital. But honestly, I was numb. The sinking feeling that something was very wrong was starting to set in.
The next day I had an operation to take cells from my bladder under general anesthesia, which is also referred to as TURBT. While they were removing cells, they also found some growths that they told me they would try to remove while they were “in there.” So far, no one had even mentioned the possibility of cancer- even though it was actively running through my mind.
That first night in the hospital was sort of joyous- I had a catheter, which meant I did not have to get up ever hour to urinate! And the tube helped to reduce the intense burning, which meant I had the first decent nights’ sleep in months.
About a week later, I met with my specialist in office, and could immediately read his distressed face. After a few simple pleasantries, he spoke the words, “I’m sorry to tell you that you have cancer.” I felt the air leave my lungs. May 31, 2010.
My husband and I had a moment to digest this news alone, as the doctor stepped out to get the paperwork and plan. I remember feeling intense relief, and a whole new heap of worry. When he returned, we all discussed the plan, and I learned that I would need to have the large tumor removed with my bladder. While he told me all of this, and that there was a good chance that removing my bladder would “get all of the cancer,” there was still a chance it would not.
As a black-and-white minded person, it seemed simple to me. Yes, remove the bladder. Remove the cancer and save my damn life! No death here- we’ll be moving right through this situation.
In the days after my confirmation appointment, and in between waiting for my surgery day, much of my family urged me to get a second opinion. The thought of living with a stoma and urine bag, to them, was entirely too much to handle. To me, it was accepting life in a new way to keep in living and get this growing tumor out of my body before the cancer had a chance to escape my bladder.
Roughly ten days later, I had my RC. After a two-week hospital stay, I ended back up at home to recover and heal. Those weeks were meant with many hurdles, post-operative blood clots and DVTs- which turned out to be incredibly painful, more so than my faulty cancer bladder ever was. More painful than adjusting to the belt and braces, or chemotherapy. And more painful than the pulmonary embolism I developed and ended back up in the hospital for four weeks later.
What an adventure bladder cancer has brought to my life.”
How has bladder cancer changed your life?
“Well, most obvious change is that I now pee in a bag strapped to my body. It’s really not a big deal to me anymore. In the beginning, I struggled with leaks, which really hit my mental state. With persistence, support groups, and learning more about the human body, I have rectified those issues, and now help others who are just beginning their stoma journey. Leaks for me are now a very rare occurrence.
I also took some classes on physical health and fitness, and am in the best shape of my old, aging life. I eat better than I ever have and exercise as often as I can. I no longer take any aspect of life for granted, which I think I did too often prior to my diagnosis. The day I was diagnosed truly changed my life.”
What are some positives that you can share about your experience?
“I listen to my body more than ever, whereas I did not before. After I had time to sit and think about things, I had been having atypical issues with my bladder and urination for months before I took any action to see a doctor in the first place. Now I note any “offages” within my body, the minute that they happen.
I spend more time with people and things I truly love, rather than wasting time on things that don’t matter. I travel more, when I can, and I try new things without the fears and worries that once accompanied my every day thought process.”
How did bladder cancer affect your intimacy and sexuality?
“There were obvious instant changes with having a stoma. My husband was incredibly nervous at first (he was afraid he’d “pop” the bag!), and boy did we need practice to “get things going again.” We were both willing to continue to try and not give up, even when it did not go as we had hoped, or leakage ruined our plans.
There are lots of specialized devices that help to hold your stoma bags against the body, some even come in lingerie form to help you feel sexy and get in the mood. With over ten years of stoma-wearing under my belt, we get along better now than we’ve ever gotten along before with intimacy and sex. We try new things when we need to and understand that physical connection is just as important as mental and emotional connections. It did take us some time to get back to here, but the journey was well worth it. Overall, I think that bladder cancer has brought us closer together and deepened our relationship in ways neither of us knew were possible.”
What advice would you want to pass along to someone just beginning their journey?
“This journey will have truly terrifying parts, AND it will have beautiful, eye opening moments that will change your life and thought process. Let it. Bladder cancer is most often curable if it is caught before spreading outside of the bladder. If you suspect you have an issue, DO NOT WAIT TO GET IT CHECKED OUT. Do not give up on any of your life’s dreams or goals but be prepared to take some time out to recover and heal wholly: mentally, emotionally, and physically. Don’t fear the stoma! It is not the end of your life!”
At Reclaiming Intimacy, we love to share Stories of HOPE to help others feel like they are not alone, and to help share valid treatments, tips, tricks and suggestions with others possibly going through the same thing. These stories are not sold or shared other than on our website and social media outlets.