Meet John and The Reluctant Brotherhood

ProstateCancer.net sat down with John Teisberg, community advocate and founder of The Reluctant Brotherhood, to discuss his journey with prostate cancer and how it motivated him to create a different type of cancer support group.

John's prostate cancer journey

About 10 years ago I had a radical prostatectomy. Today I’m cancer free and an active survivor of prostate cancer. I am, however, still grumpy about how I was treated during that adventure. Laying in extraordinary pain and considering death was not what I expected. Fortunately, I had some trusted friends who helped me sort out what was going on inside. I learned a lot about ‘healing’ and now understand that it happens on levels I’m hardly aware of, much less talk about. I visited several support groups and got good technical information. However, the important stuff was not quite mentioned.

About ten years ago I started a conference call for men to help sort out what the heck is going on inside. Every week we feature a ‘guest emotion’; glad, sad, mad or fear. It is surprising how deep some of us go with a little direction and safety. Laughter is mixed in with intense and serious stories. Sometimes we tease each other and occasionally actually get a little inappropriate. The evenings are very rich and entertaining.

The Reluctant Brotherhood

The Reluctant Brotherhood is a free conference call for men with cancer. Every Wednesday evening we meet to talk about what is going on inside. We’ve been at it for almost ten years now. There is a little talk about prognoses, numbers, procedures, medications, advancements, etc. We focus on the things that cannot be measured, what is happening inside. We talk about those dreaded things we men are so good at ignoring: feelings. The conference calls started because of frustration with the normal prostate cancer support groups. There was always plenty of good technical information, but no conversations about what the men were dealing with on the inside.

Answering a need in the prostate cancer community

Getting prostate cancer is like having your body burn itself from the inside out. Although there is much we can do about it these days, it still kills many of us. This knowledge opens a quietly swirling personal hell that is confusing and hard to understand. Few men are well equipped to deal with the ideas we are forced to consider when this hits. The need we answer is giving men a safe place to explore some of the darker places that open up for us. Often simply by talking about what is going on diminishes our fear, anger, and sadness. They do not go away, they just get more ‘right sized’ and we have more choices. We also talk about our joys and happiness.

How does a normal call work?

The actual meeting usually starts about 10 minutes after the hour. That gives everyone time to get settled in and the late comers are welcomed. The attitude is relaxed and friendly and there is usually laughing when we tease each other. The moderator greets everyone who shows up on the call and gets a name for each man. Next, the moderator goes down the list and asks everyone if they have any questions or anything they want to put on the agenda. It's fine if a guy wants to pass and just listen. We go through our agenda making sure the new guys get their questions answered first. Then, we ask the question of the evening. A typical question is; “ Tell a story about getting (glad, sad, mad or fearful) in the last two weeks.” The moderator goes down the list and each man answers the same question. We aim for a 90-minute call but sometimes go long if needed.

What advice would you give a man struggling with his diagnosis?

Well, I’d give him five pieces of advice:

• Talk with people you trust, not just your family. It will be important to be more outgoing than usual, but you can relax because you have plenty of time.
• Read Dr. Wash’s book “Guide to Surviving Prostate Cancer”.
• Get technical help and information from The Answer Cancer Foundation calls.
• Get emotional help and information from The Reluctant Brotherhood calls.
• Go out and do something for someone else.

What’s your favorite question to ask callers?

My favorite question to ask is; “You f***ing did what?!...”

My second favorite question is; “What made you smile this week?” It is amazing to hear the heartwarming things men do and consider as important. Often those moments are nothing anyone else would notice, they are delicate and sweet.

What does it mean to be an advocate?

Being an advocate for prostate cancer gives me huge satisfaction listing to men open up and discover powers and feelings they never knew they had. Listening to us helping each other, laughing together, sometimes giving difficult advice, listening to our stories, earning respect, giving respect, and caring for each other warms my heart. Sometimes at the end of our calls men say how much this call means to them. They had no one else to turn to, and they certainly never expected to be laughing about this at all. Knowing I am not alone is big medicine. If you are a man with cancer, I hope you will join us.

To learn more about The Reluctant Brotherhood and their Inner Conversations Calls, check out their website here.