A Caregiver's Perspective

Sound Advice From a Dedicated Wife and Caregiver

During the past two years, Roxana Phillips has felt scared, anxious, angry and lonely. She’s also felt positive, passionate, grateful and loved. Why all the ups and downs? Because the love of her life was diagnosed with advanced prostate cancer, and she is his caregiver.

Cancer has affected many dear people close to me. We lost my mom to breast cancer when I was 17. My dad died of melanoma years later. My niece is a mucosal melanoma survivor, and I had skin cancer. My best friend and a beloved uncle succumbed to liver cancer, and my twin brother is a testicular cancer survivor. Therefore, I’ve always been very aware of my and my husband’s health, which probably explains why I noticed symptoms even before Doug did.

After six months of doctor’s appointments, tests and monitoring, Doug learned he had aggressive prostate cancer at 65 years old. This diagnosis, however, isn’t just his. We’re in this together. The love we have for each other is ridiculously strong. I can’t imagine my life without him, and I am committed to doing everything I can to help him live a full life.

We are extremely grateful to our wonderful doctors, nurses and radiation oncologist. A referral to an outstanding oncologist led to hormone therapy, surgery and radiation therapy. I wanted them to surgically remove everything that was suspicious. Ultimately, it was Doug’s body and his final call.

Doug had hormone shots to shrink the tumor followed by a minimally invasive robot-assisted radical prostatectomy. The surgeon discovered the cancer had spread to the seminal vesicles and one lymph node. After recuperating, Doug began about 38 days of radiation therapy to eliminate any remaining cancer cells. The treatment was successful.

About a year later, his PSA level began to rise again so the oncologist added a different hormone therapy to his treatment plan. I always keep an eye on him, often noticing major and minor side effects he doesn’t seem to be aware of.

One morning, Doug admitted he’d been trying for a few hours to urinate with no success. He had a doctor’s appointment for it later that day, but I suggested we get ready to make the 40-minute highway journey early. I offered to drive because I could tell he wasn’t feeling well. He balked a little at leaving so early, but I’m glad I insisted. We weren’t even halfway to the doctor’s office before he was in extreme pain, agonizing like I’d never heard before. I drove straight to the emergency room.

A urethral stricture (likely from scar tissue) caused his urine to back up. His pain was excruciating. After a few hours and fervent prayer, he urinated, and the pain went away immediately. Surgery shortly afterward corrected the problem, and he had to self-catheterize for three months to keep his urethra from narrowing again.

That was by far the worst experience we’d had. I felt helpless and angry at not being able to relieve his pain. It was a lesson in trusting in God and my instincts to get to the doctor sooner, and remaining calm behind the wheel.

Doug’s doctors monitor him closely. He isn’t nervous before his follow-ups, but I am. It’s overwhelming, and having a solid support system helps. My faith in God is the foundation of mine. I believe He is a healer and has a hand in everything that happens to us.

Family and friends are supportive, but my family is scattered around the world and I never want to overload my friends. So Doug and I attend an extremely helpful local support group twice a month called the Prostate Network. I checked them out and told Doug to come with me when he was ready. They have a meeting that focuses on educating survivors and their family members or caregivers about treatment advances. Another puts prostate cancer survivors and caregivers, which mostly means wives, in separate rooms. We listen to doctors and speakers and then talk about everything — new medicines, tests, medical breakthroughs, and ways to manage side effects, exercises, diet and more. We’re always sharing and learning from each other.

I wish more wives would attend. It’s possible they aren’t sure how to show support. I hope hearing my story helps them realize how valuable their presence can be. It is at times like these when our husbands can really use our help.

Practical Advice From Roxana

  • Make sure he goes to his preventive medical appointments.
  • Be aware of his health and habits, and encourage him to see a doctor when you notice a change. (It’s not nagging.)
  • Keep a log of his test results, symptoms, doctors’ visits and medications.
  • Choose a medical team you trust and respect.
  • Go to every appointment and treatment. I often pick up info he doesn’t hear and vice versa.
  • Be involved in treatment planning, but respect his choices. It’s his body.
  • Find a support group for you both. Never be afraid to share or ask for advice.
  • Have a support system rooted in faith, church, family, friendship or whatever gives you comfort.
  • Take care of yourself: keep your medical appointments, eat nutritiously, exercise, relax and ask for help. It’s easier said than done, but keep trying!