Bladder cancer caregiver: How cherishing the hard times enriched my life

Caring for my husband, Wayne, during his cancer journey enriched my life because we were able to spend so much time together. 

Wayne was diagnosed with non-invasive bladder cancer at age 75, after noticing blood in his urine in 2005. We were both upset. We knew treatment for bladder cancer would affect our plans, since Wayne wanted to travel more.

I was more concerned about what I imagined Wayne would have to endure. Fifteen years earlier, he’d been treated for kidney cancer. At that time, he’d had a kidney removed and he didn’t want to return to that hospital.

Several of Wayne’s friends mentioned MD Anderson, so we checked it out. And after meeting urologic oncologist and surgeon Ashish Kamat, M.D., we knew that we’d made the right decision. 

Side-by-side during bladder cancer treatment

Wayne’s cancer was caught at an early stage, so the first line of treatment was an immunotherapy drug called Bacillus Calmette-Guerin (BCG).

While Wayne was receiving his immunotherapy treatments, I would either read him an interesting or enlightening book or article, or we would just talk. Sometimes, if he thought he could sleep, I’d knit or read in his room.

When Wayne had a reaction to the treatment — usually chills — I’d warm towels in the oven and put them in bed with him. I never left Wayne’s side, and I never wanted to. Wayne was my true sweetheart.

Committed to care as cancer progressed

I loved every minute of the time we had together. Even when Wayne’s cancer spread to his lung and he needed chemotherapy and then surgery to remove the affected lobe, I stayed with him at the hospital.

Once Wayne came home, I never saw the need for a helper or additional caregiver, mainly because Wayne was a great patient and didn’t like to be in bed. He would still get up every morning, shower, shave and try to go about his day — even though “his day” usually just involved staying around the house, reading the paper, working in our home office and occasionally taking naps. 

When Wayne had a permanent nephrostomy tube inserted to deliver the immunotherapy directly to his kidney every three weeks, I knew it was important to keep the area clean, so I changed the bandage every four to six days. If the tube was ever uncomfortable, I’d remove the bandage and clean it again. And if the skin around it ever looked red, I’d take Wayne to the doctor right away.

I knew what I was doing for Wayne is what he would have done for me if our positions had been reversed. I also wasn’t working when Wayne was diagnosed, and we didn’t have small children at home, so I didn’t have any other distractions.

Laugh, grieve and give back  

I feel fortunate to have been able to share the moments I did with my husband. Whether we were waiting to see the doctor or have a procedure, or just sitting together in treatment rooms, Wayne and I laughed a lot. But we also grieved. Wayne and I dealt in reality, so we paid close attention to his needs when we realized his life was coming to an end.

Wayne passed away on May 20, 2010. I still miss him every day, but I stay close to his memory by heading the foundation he started to help the less fortunate. It was important to Wayne to help others with serious needs, limited resources, and few alternatives. It’s important to me, too, and I’m glad I can continue the work he began.

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