Ms K suggested 2 books that could help me better understand the shame and feelings of imperfection cancer can bring: The Gifts of Imperfection (Hazelden; 2010) and Daring Greatly (Avery; 2012); both by Brené Brown, PhD, LMSW. Reading these books was helpful. Dr Brown talks about interviews with many adult males who feel shame for no longer being the person they once were.
Men’s cancer journeys have found many of us on our backs with our legs up in stirrups, wearing pads, practicing Kegel exercises, and dealing with urinary and fecal incontinence. We may have to learn to manage erectile dysfunction with a pill, a pump, or penile injections. Even after all of that, some patients are not able to replace the capabilities they lost and find themselves seeking alternative methods, such as watching porn. These topics can be very challenging and embarrassing to talk about — but they must be discussed by both the patient and their health care team.
Helping Others Helps Me
My journal and our meetings led Ms S and Ms K to ask me to start and lead a much-needed prostate cancer support group in my community. However, Ms S warned me to not rush into this. She knew I needed more time to recover before taking on the problems of others. She found an online group by the name of Us TOO International. Eventually, I became affiliated with them and started a local chapter.
I learned a great deal about handling challenges from Ms K and Ms S and am now doing my best to earn the trust of the members in my group. When I meet with couples who just received a prostate cancer diagnosis and have many questions about what is ahead for them, it is interesting to hear what each hopes for or fears. The wife/partner is most worried about her husband surviving and then about the possibility of depression challenging him and affecting their relationship; whereas it is probably no surprise that the man’s fears focus on incontinence and erectile dysfunction. Couples really appreciate being able to talk with someone who has experienced the treatment options they have before them and is willing to openly and honestly answer any questions relating to those past experiences as well as current side effects.
I also attended support group meetings at a cancer center where patients with all types of cancer were welcome. It was an interesting experience because I was the only male survivor attending each month. We are all part of what I now consider my cancer family.
Last year I was awarded the “Healthcare Volunteer of the Year Award” for the area of the state I live in. There were 600 people at the banquet that evening celebrating those who won in several categories. In my speech, I quoted Edward Everett Hale: “I am only one, but I am one, I cannot do everything, but I can do something. And because I cannot do everything, I will not refuse to do the something that I can do.”
Cancer has changed the most important parts of my life. Every morning I now give thanks for another day and pray I will do my best to make it a good one. Enjoying special moments with my family is a privilege I appreciate better.
I believe that all navigators must have had an influence in their life to lead them into this line of work. For me the rewarding work I now find myself doing for patients would never have happened without Ms S, my cancer navigator, being the most caring and compassionate person I have ever met — who gave great hugs, when needed — and my cancer counselor/therapist, awesome Ms K, teaching me so much about what is really important in my life.
Lee Hillstrom is a cancer survivor, caregiver, and advocate.