A Forum for Her: Part 1 | Support Group Members on Caregiving, Self-Care, and More

Kathie Houchens and Karen Bernatis co-facilitate multiple support groups for women whose partners have stage 4 Advanced/metastatic prostate cancer as part of ZERO's Us TOO support group network. Kathie, whose husband is a twenty-two year survivor, and Karen, whose husband is a seven year survivor, reached out to more than twenty support group participants to glean their wisdom to share with others facing similar challenges.

These support groups, called A Forum for Her, offer safe spaces for women to share their journey in a confidential circle where others understand the challenges and lived experience of the journey with prostate cancer. These Zoom-based virtual support groups meet either weekly or monthly as fits the group’s needs. Truly “a couples’ disease,” prostate cancer affects the very relationship that needs to be strengthened and supported, now more than ever. 

The topics and comments here come from the trenches where day by day victories are celebrated, difficulties are acknowledged, and emotions shared along with coping skills and big doses of love and hope.  The ladies’ contributed comments have been merged to protect their privacy and allow for overlap of ideas.

What are things that you would like 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 two and a half years of chemo and hormones and more, 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!”

“I would have liked to know what the wider view is for the stage and diagnosis we were facing.  Were there other choices than what we were offered? What might be ‘outside the box’ possibilities? Who gets to choose? I was not bold enough to push beyond the rather narrow view we were given along with the generality that five year survival is what to expect.”

“At the beginning, I wish that someone would have helped me find a group of other prostate cancer co-survivors. 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 Support Group Network]. I wish I had known about this support group much earlier in our journey.”

What are your thoughts on support groups for caregivers?

“Early advice would be to find a group where relationships form over time and people are committed to being present for each other. It helps to have a consistent group who make this support gathering a priority. By recognizing that it is not just about me but to be willing to hold safe space for others, I have learned that in giving my presence, I also receive an abundance of compassion and understanding. I am not alone. This is a sacred sisterhood.”

“Being part of a support group has been extremely helpful. I can talk with others going through the same things. 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. Some of our husbands have exchanged phone calls and emails.”

“Participation in a support group has been invaluable. For many years, my husband’s diagnosis was secret, he didn’t want others to know. Even today, more than seven years later, it’s like the elephant in the room – no one talks about it. Being able to talk openly about my husband’s journey and hearing about others’ journeys has been very helpful.”

What are ways in which you provide self-care to yourself?

“I’ve been getting up super early, while my husband is still sleeping, I take a hot shower, attend to my own health needs, make coffee, maybe watch some TV news. It’s not that it has to be secret, but I…I need my alone time. The morning works best.”

“I set aside time to read fiction, though it’s usually when my husband is out. When he’s home, I want to feel available for him.”

“For my self-care, I attend a guided meditation class. I also try to swim or exercise regularly. I see a therapist one-on-one once a month, and that helps, too, as I know this journey is hard, and I want to have the tools to be able to handle things when times get tougher.”