As Clinical Coordinator of Saint Luke’s Hospital Koontz Center for Advanced Breast Cancer, I am moved every day by the women and men we treat. I am inspired by their heart, bravery, and perseverance. That’s why I am honored to organize 2 annual retreats: one for couples and one for singles and a support person.
I recently returned from A Journey of Courage and Hope Retreat. This two-and-a-half-day retreat is facilitated by our multidisciplinary team and designed for metastatic breast cancer (MBC) patients and their caregivers to get away from the daily routines and responsibilities and focus on communication, support, information, and personal reflection. The retreat is a time for not only having difficult conversations about therapeutic ways of moving through grief progression and end of life, but also for bonding and creating special moments. The goal is to deepen the relationship between patient and caregiver through communication and discovering mutual goals for the next phase of their journey.
I interviewed 2 retreat participants—LeAnne and Rhonda—about their retreat experience and its impact on their lives. With their permission, I present our discussion below.
Janie What were your thoughts and feelings about attending prior to the retreat?
LeAnne I was apprehensive about attending the retreat. I didn’t want to be around people, and I really didn’t want to attend support groups at that time. I didn’t know what to expect, and I didn’t want to talk about things that are scary. I was thinking, “How could this be good?” In the back of my mind, though, I was desperately craving a connection.
Rhonda I wanted to know everything about MBC so that I would know how to battle it! I saw it as an amazing opportunity. My husband and I were both very excited to attend, and I came with great expectations to connect with others. I longed to hear others’ stories. I was looking for hope by learning how others are dealing with a cancer diagnosis. What I received from the weekend was much greater than all my expectations. I appreciated the opening lecture about the basic facts and statistics of MBC and then went deeper into the subject throughout the weekend.
Bonfire
After the opening session, “The Power of Story,” we host a bonfire complete with s’mores.
Greeting cards
Participants prepare cards for future milestones of family and friends.
Beyond the “C” prom
On Saturday evening, participants enjoy dinner and dancing at a sea-themed prom.
Legacy work
Our team designs activities for participants to reflect and record memories through journaling, lists, recordings, and tangible memorials.
Keys
As our final retreat activity, each person receives a key to pass around the circle as they share their key take-away from the retreat. Each person in the group touches the key as a symbol of community and support.
Janie What was the most meaningful experience of the retreat?
LeAnne I enjoyed the time spent out of the structured groups when we did not have an objective or goal. We were all there, just people, around a bonfire on Friday evening or during a meal. I liked hearing how people were living life. We were just there enjoying fellowship and seeing each other as people—not a diagnosis. We are all unique and yet going through the same thing.
Before the retreat, I felt like this is the end, right now. Everything is terrible. It was the time when your mind is cloudy, and your emotions are not level. Once I got beyond that, it was almost like I had a new vision. I know my feelings are valid, and I now have people to connect to.
Rhonda It’s hard to choose just one thing because each thing built on the last thing. But, if I had to choose, I would say the full group discussion time and talking about things that weren’t necessarily comfortable. It was helpful to talk about how we can plan and deal with it, and how we get strength from talking about it. Healing comes from that, and then more strength. I appreciated that we addressed some issues that I hadn’t considered yet. What about the legacy I want to leave? What am I doing with my life now? Our life is a story, and we all have that common denominator of MBC, and as much as we may want to go back to the way it was before, we can’t. So, how we control what happens to us, and how we respond to it is what is important—how we reclaim our sense of identity. We find meaning and purpose in that.
Janie What topic has stuck with you most since the retreat?
LeAnne I don’t like sayings like, “Seize the day,” or “Live every day like it’s your last.” For me, that creates anxiety because you can’t live every day like you’re taking on the world. We are called to “be still.” In the stillness are moments of fullness. Part of that day may be simply to enjoy the breeze and the sunshine. Having the realization that I have this day is wonderful. No one is saying, “This is your last day.” I started realizing I do have today. The word “today” has become a powerful word for me.
Rhonda As a couple, we had that chance to talk and reflect. It was tremendously beneficial for our relationship in dealing with my cancer diagnosis and the journey that we’re on.
Faith is huge for me and provides direction and encouragement in my life. And so the spirituality sessions with scripture, meditation, prayer, and reflection were very meaningful for me. Faith is the foundation for a strong mind, and that equals a strong life.
I also appreciated the oyster poem (sidebar). The whole sense of how cancer came into our lives and cannot be changed. What are we going to do with these circumstances? It is still our story, our life before cancer and our story after cancer. There is more story to write. There is adventure ahead of us. Our journey, with or without cancer, is to pursue our purpose. We have to fulfill that purpose and potential.
Janie How did you feel about the legacy activities?
LeAnne The legacy activities were very hard for me because it was taking that knowledge of my disease and exposing it wide open. It was hard because I have a 3-year-old. How can I leave a legacy when I have a little tiny person in my house? Will she remember this? I started feeling some anxiety, because I do want to leave a legacy, but there is so much to do. How am I going to do it? My husband reminds me that I don’t have to conquer the whole wide world today. I couldn’t imagine making a legacy. I remember one of the gals looking at me and saying, “Take the trip! Go to the beach! Make the memories!” And so here we are months later, and we are going to the beach! I would rather go and experience something new with my daughter than remodel something at my house that is not going to leave a legacy.
Rhonda The legacy activities were the icing on the cake.
Nobody sits down and thinks about planning for the end of your life. But for me, there should be joy in this.
I had never kept a journal, but now I try to write as much as I can. Not just for later-on legacy, but for me, now. When I go back and read my thoughts and feelings, I remind myself how far I have come. My husband and I spend more time together now because of cancer, and I see that as a great blessing. We had the time before, but we didn’t think we did. We took a trip earlier this spring that we wouldn’t normally have taken in the spring because of the planting schedule for our farming business. But, we did it. We’re mindful to not let life drift away. Use the time you have and take those opportunities.
The whole time during the legacy activity, I kept thinking it’s a choice. I can choose to take that chance to do something with my life from here on out or just let it be…just do my appointments and daily activities. Now, I want to be mindful about how I live, make a choice and take a chance, or my life will never change. For me, this was big, a huge shift in how I look at life. Really, it’s no different than anybody else. So, life has to change a little bit with this diagnosis, but it is still life, so let’s live it! The legacy activities were very useful and brought everything full circle.
There once was an oyster whose story I’ll tell—
Who found that some sand had slipped under his shell.
Just one little grain—but it gave him much pain—
For oysters have feelings—although they’re quite plain.
Now did he berate the working of fate—
Which had led him to a deplorable state?
No! He said to himself, as he lay on the shelf
“If I can’t remove it—I’ll try to improve it.”
So, the years rolled by as years always do,
And he came to ultimate destiny—stew!
But the small grain of sand which had bothered
him so—
Was a beautiful pearl all richly aglow.
Now this tale has a moral for isn’t it grand—
What an oyster can do with a morsel of sand?
What couldn’t we do—if we’d only begin
To enrich all those things that get under our skin.
~ Anonymous
Janie Were there any unexpected outcomes from attending the retreat?
LeAnne I loved connecting with each person and learning about their lives, their jobs, trips they’ve taken, and things they want to do. That was very impactful for me, because I got to know others with this diagnosis. We are all just people; we are alike. We have a whole life ahead of us, and we are all created uniquely. I realize that I need community with others going through this.
Rhonda Even though the weekend seemed short, there was such a great amount of information, support, and lifelong friendships created that would not have been possible without the retreat. It was not just about gaining strength, it was about giving strength to others. Part of our strength comes from giving support to others even though we’re fighting MBC ourselves.
