“This is a brotherhood you do not want to join.”
It’s not the most inviting come-on from a fraternal group. But it’s also not one you can reject. “If you do have prostate cancer, you definitely want to be a part of this,” the group’s web site states. The Reluctant Brotherhood is a group that joined with other online support groups to form the Answer Cancer Foundation. They are wise men with advanced prostate cancer who have experienced the bone pain, the nausea, the medicinal dead ends, the clinical trials. They have dealt with the doubts, the exhaustion, the anger and so many other emotions that come with dealing with this shitty disease. “Technical talk and numbers are kept to a minimum and we focus on our emotional lives, which is something few of us are comfortable talking about,” the site states. But what I have found to be most helpful was the group’s second opinion. The weekly calls begins with as many as a dozen men checking in by phone from California, Minnesota, New Jersey, Australia and elsewhere. The moderator and co-founder, Rick Davis, sorts out who is on the call with the help of another member. There is good natured confusion since we are talking about men in their sixties and seventies who are not digital geniuses. But they know the issues that members of the brotherhood are confronting. They know the meds. They often know the patient’s doctor. They knew my doctor (reputation good). And they have questions that the doctor should be asked. When I told them I was considering stopping chemo, they suggested having my oncologist ease the dosage, use a different drug (they mentioned a drug that some find easier to cope with). They rated the effectiveness of different drugs for nausea, talked about medical pot that some found helpful and others found to be useless. Some relived their own miseries on chemo and said they were glad they hadn’t quit the regimen -- although one man said he wouldn’t do it again. They encouraged me to not skimp on the pain pills, something I find difficult to do. Here was expert advice that wasn’t from a doctor who had never endured the side effects of his prescriptions. They revealed several alternatives that I wouldn’t have trusted if I had read about them online. This group’s pedigree to evaluate treatments is unquestioned. These men are patients, but they are also very patient with someone like me, bewildered and in pain. They know what it feels like to want to throw in the towel. They didn’t say I shouldn’t. They just talked about coping. And they did it without anger at the cancer or their doctors or their rotten luck or faulty DNA. It may be a reluctant brotherhood, but there are times when any brotherhood is welcome.
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