A Forum for Her: Part 2 | Support Group Members on Challenges, Treatment Decisions, 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 second in our three-part blog series, 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.  Female perspectives have been merged to protect their privacy and allow for overlap of ideas.

What are ways in which you enjoy self-care as couples?

“Relationships have their challenges in good times and bad, but a terminal diagnosis put our interactions on a whole new level. ‘How can I get angry or annoyed with a person who could die? He’s dealing with so much,’ I tell myself, ‘so I can just let his negativity pass. And how can I complain about my own needs?’ I feel guilty even thinking of what I am missing. In my support group, I found out I was not alone, and we could talk about strategies to help. Good ideas emerged for staying honest and keeping the conversation positive, too. Brainstorming with other women gives me courage and new ideas.”

“I think couples are discouraged right from the beginning by their doctors regarding sexual intimacy. I have a strong feeling that planting those negative thoughts keeps couples from even trying or prompts them to give up too early. It does take a lot of concentration to make sexual intimacy a priority. I absolutely believe it has kept our outlook on life much more positive because we chose to keep on keeping on in every possible way.”

“At a prostate cancer conference, we learned about nutrition for prostate cancer and began to pay attention to our diet. It gave us something positive to focus on that we can do together and that benefits both of us.”

“Doing anything side-by-side works for us, a way to see where you fit together as a couple, sharing something in common. Sometimes reading in the evening or taking a walk around the neighborhood in nice weather. It’s important to find time and space to be together. A trip to the farmers’ market or to an orchard to pick fruit.”

What are some emotional challenges for both partners?

“As the care-partner, I am the younger and more energetic of the two of us. I want the best possible outcome for my husband as I urge him to be an active participant in his treatment choices, but the problem is that he says, ‘If it were up to me, I wouldn’t do anything.’ I remind him, ‘It IS up to you,’ but his approach is passive at best. He will take orders and do what the doctors say since ‘they are supposed to know best,’ but behind the scenes he complains that it is all nonsense. His attitude is like he has already given up. Is it depression? He seems NOT to be invested in taking any steps toward improvement.”

“At the beginning, I let it be ‘all about him.’ I watched him withdraw from me as the side-effects of treatments diminished the man I had known for over thirty years. It took an emotional toll on me to be kept at arm’s length, not touching or hugging, any physical intimacy put ‘on hold.’  Of course, I could be understanding up to a point, but then I wondered if my needs were going to be set aside forever. I needed help to even know how to talk about what I was feeling. My support group encouraged me to find professional counseling help, and I did. It made a huge difference in how I handled things, and I could give myself permission to express my needs without judgment or expectation. A couples’ counselor is now helping us work through some issues. It feels like our ability to communicate honestly about our relationship is improving.”

What are some ways in which you make treatment choices together?

“When my husband was diagnosed, we had consultations with three different oncologists from three different medical facilities. We are very happy with our oncologist and staff at the cancer center we go to. We also have a palliative care team that we have met with.”

“I try to keep up with the latest prostate cancer treatment news, but not regularly. I hear things in our caregivers support group that I might check out, and I sometimes let my husband know. Although he makes all his own treatment decisions. The only input I have is planning trips around his treatment – we do go together to appointments.”

“Just scheduling treatments and other appointments can be daunting. Some doctors’ offices take the initiative to set up appointments with you and for you, but with understaffing and overworked people everywhere, the patient and care-partner need to take the initiative to be sure the ball keeps rolling. Some treatments are at a premium and require special scheduling. You don’t want to lose out because of a missed phone call.”

“Because we are fortunate to live in a large metropolitan area, we have several fine medical facilities within easy access. We chose based on recommendations we trusted, both within and without the medical community. However, to speak candidly, I sometimes feel like we are riding on the back of the big research institution motorcycle.  We just do what they say. My husband doesn’t care to ask questions, and I am weary and tired and do not want to become an expert in prostate cancer. I would rather just make the leap of faith with the medical oncologist and just hang on when the road ahead looks bumpy.”