What Is the Bladder Cancer Retreat? Interview with Co-Organizer Linda

A member of the BladderCancer.net Editorial Team spoke with Linda, a co-organizer of an annual event called the Bladder Cancer Retreat, to learn about this special weekend. Linda is a bladder cancer survivor herself and tells us how she became aware of the Bladder Cancer Retreat, how she got involved, and what the event means to her.

How did you learn about the Bladder Cancer Retreat?

Question: How did you find Bladder Cancer Retreat and get in touch with the founder, Nancy Parrish?

Linda's answer: I read about the bladder cancer picnic that Nancy held each year on the Bladder Cancer Advocacy Network (BCAN) site online in 2015. I was not able to attend in 2015 due to a prior commitment, but I did attend in 2016. I met Nancy and many wonderful people who gave me support and showed me that there are many people dealing with this disease. It was amazing to meet so many people in person who all were there for the same purpose.

Offering to help with future picnics

I offered to help Nancy with future picnics as I saw the work she put into it and knew without question that I wanted to attend this event annually. For the 2017 event, I suggested making it longer and having people arrive a day earlier as it is great to spend time with these survivors and to find out tips to make things easier. It's also great just to enjoy the gorgeous Maggie Valley area where the picnic takes place since people come from all over the US. Nancy agreed that the picnic would become a retreat and that people would be invited to come early and stay late. We went from a Saturday get together with lunch and breakout groups to a Friday to Sunday weekend. Now we invite people to join us starting Thursday and stay until Sunday.

What happens during a Bladder Cancer Retreat?

Question: Where is the retreat and what activities does a typical retreat entail?

Linda's answer: Normally, we start arriving on Thursday and get together for lunch if there are enough people interested and available. Thursday late afternoon we head to the mountains to view the scenery and the elk and either have a picnic dinner there or back in Maggie Valley depending on the weather. It is a great time to just get to know the others. Friday is a great day to check out the beautiful area and the towns nearby such as Cherokee. Maybe a trip to Asheville to visit the Biltmore. We make suggestions and set up carpools for those heading out to the same area. Some will go sightseeing and shopping on their own but most join in with a group. In some towns, we try to meet up for lunch and sightsee together.

A meet and greet with fellow bladder cancer survivors

Late Friday afternoon when the majority of the attendees have arrived, we have a meet and greet so everyone can visit, receive the bio booklet which has info on every attendee in a binder, and have hors d'oeuvres and light beverages. Then, we will head to a local restaurant for dinner. After dinner, people divide up and do whatever they wish. There are many local places with evening entertainment.

The official meeting begins on Saturday

Saturday, we start with breakfast and then our meeting begins. Nancy and I greet everyone and give a little intro about us for those who have not attended prior and may have only come in for the day. We then have at least one speaker and possibly some follow-up questions. We break for lunch and follow that with breakout groups consisting of caregivers, those with their bladder, and those without - there are separate groups for neobladder/Indiana Pouch (IP) and ileal conduit (IC).

Connecting with people who have similar experiences

We have a leader for each group, we share stories and questions, and we have handouts and many free samples generously provided by manufacturers. We try to end about 4 and have some sort of light activity such as hunting for beautifully painted rocks, seeing a local band, etc. The day ends with a campfire and songs, light dinner, maybe smores, etc. as well as music by one of our regular attendees. On Sunday, for those remaining, we have a church service in a park led by the husband of an attendee and then either head home or have brunch.

Meeting bladder cancer survivors in person and receiving that support

Question: How would you describe the support you feel when you attend these retreats?

Linda's answer: I will honestly say that I do not know if my life would be the same without these amazing people. Each year, we have a different group of attendees. There are always some people who come every year like a ritual. We have some newbies and some who randomly attend. Whatever the group, we seem to mesh immediately, and everyone is talking and sharing as though we have known each other for decades. I believe that this is because we have a common thread - that being bladder cancer.

Keeping in touch after the Bladder Cancer Retreat

Because everyone is provided with a binder with a bio and contact information of everyone who attends, there is always a way to reach someone after the retreat to ask a question or offer support. Nancy and I keep track of who is having an especially difficult time or having a major procedure and send out a group email asking for cards and support for that person. The response is overwhelming. People you have known for literally a couple of days reach out and ask how you are, what they can do to help, etc. Nancy and I bonded and have become very good friends and text or talk all of the time.

A life-changing experience

This retreat is life-changing for people who honestly feel that they are the only ones with this devastating disease or the only one without a bladder or they live alone with no one to discuss their specific issues. We have been fortunate to have many companies who have provided information, handouts, and samples of their products that many people would not know about if they had not attended this event. The most important thing is that everyone leaves with a much larger support team and knowing that no matter what happens in the future, they have people to reach out to for support who know exactly what they are going through. I would not ever miss attending, and I encourage others to consider it. The cost of the retreat is $40 (up from $35) per person and includes Friday meet and greet, all Saturday meals, handouts, and the bio booklet - one per family. It is well worth it.

The Bladder Cancer Retreat for 2020 has been canceled, but we will update this page with the next Retreat date once it is confirmed.