Ask the Advocate: Coping with the Side Effects
It's one thing to be told "you have prostate cancer", but then you have to shoulder the weight of everything that comes after, including coping with the side effects of treatment. In this edition of our Ask the Advocate series, our advocates share their experience managing treatment side effects.
It's not easy to walk around and carry on a normal life when you know you have cancer. It doesn't go away by itself. Your choices narrow. So you feel some extra weight that is more emotional than physical, but it can contribute to fatigue. Post surgery, the biggest challenge is being patient. Who wants to be incontinent for an indeterminate amount of time? Who wants to experience ED? I'm finding, almost two months into my recovery from robotic surgery, that seeing improvement makes it easier to accept a longer time frame for full recovery. If I can manage this for two months, I can manage it for four or six. I didn't have that perspective at the beginning of my recovery.
After the radical prostatectomy, my biggest concern was sleeping with the Foley catheter. I live alone, so there was no one to worry about other than my own needs. It was easiest just to sleep in my recliner chair, so I did that. I never used the leg bag, it filled too fast, so I would put my large bag in the garment bag I come home with from the hospital. One suggestion I have is to bring leak protection with you to the urologist office if you have your catheter removed there, or at least ask for a pad there. I leaked into my underwear after I had mine removed, and I was at the pharmacy -- talk about embarrassment. You can remove the Foley yourself in the shower, just by cutting the water balloon on the side and the inserted part just falls right out. I did this after my 3rd bladder ectomy. If you have radiation, you might burn. Get Triamcinolone Acetonide Cream, it helps. Luckily a work friend's dad had extra left over from his cancer treatments, and gave me the rest of the jar. If nauseous, eat ginger (I ate ginger snaps), it helps too. Now for the hormone injections, best to take the day of injections and the next day off of work, you may get grouchy. I usually scheduled my shots for Fridays.
Coping with the physical side can be hard for many men. The side effects of surgery or hormone therapy can impact masculinity in many ways including strength, stamina, and of course erectile dysfunction. While ED can be improved with Cialis or Viagra it’s not a total cure for some and can really only be dealt with in a strong partnership with one’s spouse. The other effects are best dealt with head on by increasing physical activity in conjunction with training with a cancer rehab specialist.
My advice is simple: “live your life.” Exercise is paramount. I wasn’t the type to exercise though. I use to run a lot. That’s about it. Once upon a time, I was a marathoner. My only athletic claim to fame was keeping pace with Alberto Salazar for the first 2 miles of a 10k one October. After those first 2 miles I settled into a human pace. I sure didn’t feel like exercising after a month on Lupron. My wife got me off my butt. She kept me moving. We started by just going for a walk. Soon after that our walks always seemed to have a hill somewhere in them. I hated them at first but I felt better afterward. I eventually looked forward to them. We worked up the mileage and terrain. Sometimes we would jog part of it. We bought bicycles and started alternating between walks, hikes, and rides. We bought kayaks and incorporated those into our routine. (Technically the kayaks came first and my wife bought the bikes and the boats.) We now dedicate a portion of each day to getting out and moving. My only other advice is to laugh loud, long, and often. Cancer hates laughter.
Learn all you can about prostate cancer from your medical team and by studying as much as you can online. You’re in for a battle, so just like we’re taught in the military, know the enemy. Learn the alternatives, and by knowing them, question medical decisions you have questions about. This is your body and your life -- take control.
Have you made personal connections through your journey with prostate cancer?