ZERO ® – ADVANCED PROSTATE CANCER NEWS
WINTER 2023/2024
Kathie and Karen co-facilitate multiple support groups for women whose partners have advanced/metastatic prostate cancer, as part of ZERO’s Us TOO support group network. They reached out to more than 20 support group participants to glean their wisdom to share. What would you have liked to have known sooner? “I wish I had known at the beginning that survival times are a HUGE bell curve. Things change. New treatments are coming along and we now feel like we have possibilities again. After… being told at the outset that this is not curable, then last week his PSA was undetectable for the second month! The doctor said ‘You could live a long and healthy life.’ It puts our minds in a whole new place. One of hope!” “As treatment options evolve, so do the combination of various treatments. Men are beginning to go through second cycles of new drugs like Pluvicto, increasing their longevity. Being told at the beginning that there is a vibrant pipeline of possibility would have eased the panic of a stage IV diagnosis.” DOES YOUR LOVED ONE HAVE ADVANCED PROSTATE CANCER? Words of Wisdom from Our Caregiver Support Group Members Kathie Houchens and Karen Bernatis, A Forum for Her support group leaders
Kathie Houchens
Karen Bernatis
How do you practice self-care? “I do a 10-min “over age 50 arms workout” on YouTube with an instructor who is always smiling and makes me feel good.” “Yoga helps me stay grounded in my body and in this present moment. It is a time I set aside to relax and refresh my body, mind, and spirit.” “I try to have a full body massage once a month. It is a luxury, but one I need right now.” “ I attend a guided meditation class. I also try to swim or exercise regularly. I see a therapist once a month and that helps, too, as this journey is hard and I want to have the tools to be able to handle things when times get tougher.”
“I wish I had known more about how my husband’s body would change and how that would affect him. The loss of muscle mass and fatigue was downplayed… I think doctors could do a better job of incorporating the mental healthcare aspect at the time of diagnosis. And include the partner or spouse as an equal. Both of us need emotional support. I was not adequately prepared for how to handle it all.” “I wish someone would have helped me find a group of other prostate cancer co-survivors in the beginning. Wives and partners are overlooked, undervalued, and overwhelmed in a strange new world of medical terms. There is little to no information about support groups like ZERO’s Us TOO.” What has your experience been like in these caregiver support groups? “ I appreciate the “safe space” – this is the one group of people with whom I can freely say what I have to say. Also, to hear other women talk takes away my feelings of isolation. I am not alone!” “We’ve built enough trust that we can share our innermost fears. We can laugh and cry with each other. I think it’s helped my husband, too, because we learn of other treatments, side effects, etc. from each other which helps us all.”
“I nap when I feel like it. Some days the emotional energy drains me and I allow myself to rest.”
To read more advice from these caregivers, see our caregiver blog series at https:// zerocancer.org/blog/forum-her-support- group-members-caregiving-self-care-and- more-part-1 . For more on resources for caregivers, visit zerocancer.org/caregivers.
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