Q. What is Phoenix5?
A: Phoenix5's only current activity is through the Web site at http://www.phoenix5.org that is dedicated to helping men and their companions with the social, emotional and sexual issues that are forced upon them by prostate cancer. The emphasis is on the side-effects of various treatments such as impotency and incontinence which can destroy a man's self-identity, his confidence and his relationships.
Q: How was Phoenix5 started and by whom?
A: I was diagnosed with "advanced and aggressive" prostate cancer in November 1999, with a PSA of over 1000. ("Normal" is 4.0 or less.) My treatment produced the very issues that this site is about. When I realized how many men must face these issues and how little help there is, I started working on the site in March, 2000, and it went on line in June. For more information on P5, go to the Information page. We have no affiliation to any other group.
Q: Why the name "Phoenix5"?
A: Since the site was my idea, I didn't care to name it after what is trying to kill me. I selected "Phoenix" for the mythical bird that rises from its own ashes. This is what many men with prostate cancer have to do. The "5" was added because "5" in Roman numerals is a "V" which stands for victory. (See drawing above.) Shortened, it became "P5."
Q: What is unique about Phoenix5?
A: Two things: There is an interactive glossary and then there is a matter of emphasis. When I was struggling with my own problems, I struggled with the words while tried to find material about about the issues that threaten a man's identity and any intimate relationship. I wanted to fill in that gap. P5 will rely first on the experiences of other men and their companions, so we can learn from those who have faced these challenges. There will be published articles and stories but those that affect the issues of masculine identity and relationships are pulled to the fore.
Q: How were these first-person accounts gathered?
A: From several sources, for example, by monitoring lists and seeing an account that was particularly moving or insightful or informative. I would write the person and ask if I could repost it at P5. There were some gathered from Web sites and then there were some that people wrote to me in email. In each case, I asked for their permission to repost it.
Q: Were the stories censored?
A. No. Many were merely copy-edited, meaning edited for spelling and some clarity. After all, nearly all were pretty spontaneous and weren't written for "publication." But none were censored. As a result, some contain some raw and explicit language but it is what the person felt at the time. Some are analytical and some emotional. They are merely how the people expressed themselves.
Q: Are real names used in all of these first-person stories?
A: Not always. Those who wanted their names deleted were arbitrarily assigned another. I had an alphabetical list of names, for example, Adam, Bill, Charles, David, Edward, and would assign the next one when needed. The same with women's stories.
Q: Is there a difference in the men's and women's stories?
A: In my view, the men tended to write about the "mechanics" of PCa, like the treatments or the tools of recovery. The women tended to write about the feelings, emotions in the process and often about the difficult time they have in talking with their man. I came to realize that the women had more to say than the men about the effect of PCa on the relationship. Perhaps it is by their nature but, in my estimation, their role and emotions and views in the man's fight have been seriously underplayed or ignored.
Q: Aren't there other resources that deal with these issues?
Yes and there are links to them and they should be visited. P5 merely tries to emphasize the challenge to a man's masculinity so this topic can be easily addressed. Also there is no such thing as "too much education" about prostate cancer. I hope more sites appear.
Q: What are the basic issues men face with prostate cancer?
A: There are many, starting with choice of treatment. The issues that I came up with when I decided to do the site were the social, emotional and sexual issues that are created by prostate cancer and treatments. There are certainly other issues such as financial and employment and spiritual and while they will not be excluded from discussion at P5, the emphasis will be on those that deal with or effect masculine identity and relationships.
Q: Do all men with prostate cancer have these issues?
A: Not necessarily. P5 is for those who do. By our nature as men, we are not comfortable talking seriously about our masculinity, let alone a threat to it. It is embarrassing and difficult. That is why P5 was created, to give those men a place where they can safely and privately see that they are not alone and that their masculine identity can be repaired, restored or reinvented. That is the significance of the name.
Q: Why does prostate cancer threaten a man's identity as a man?
A: Unlike other forms of cancer, it attacks the physical core of a man's sexuality, the prostate gland. Then there is the treatment, which can produce impotency, a curse word in the masculine vocabulary. I know of men (my father-in-law was one) who refused treatment, because they would not accept impotency. That is when prostate cancer is more than a disease and becomes an issue of masculine identity and affects the decisions about treatment and medical care. P5 is intended to give men a chance to learn about these issues so they can either apply them to their medical decisions or to their post-treatment lives.
Q: Are there treatments that don't cause impotency?
A: First, the type of treatment one might even choose is determined by the nature of the disease. Some treatments are useless with some forms of prostate cancer. Second, some treatments have a greater risk of impotency than others do but they might offer a better chance of dealing with the disease. That is why education is crucial, so this can be discussed with the medical team. That is why the experience of those who have gone through this can be of value.
Q: How does one become educated about the choices?
A: This question can produce arguments similar to asking how one learns how to buy a car. The response will often depend on how happy or upset the person was with their experience with the car dealer, want ads, browsing the Net, reading "Consumer Reports," buying from a friend, etc. It is no different with getting educated about prostate cancer except for one stressful difference: your life and masculinity is on the line. That stress and the feeling of urgency are known by those of us with prostate cancer, which is why P5 and the other private sites were created. Use them and learn more how to get educated.
Q: Can Phoenix5 help in choices of treatment?
A: Only a doctor can recommend treatment but, hopefully, P5 can help you understand. Check the stories and the articles (and the advice for the newly diagnosed) and visit the other sites. The process will be difficult and at times frightening. Just know that there are a lot of us who know that feeling. You aren't the first. That is why P5 and the other sites and resources exist. Those of us who have endured the fear and confusion are trying to make it easier. Accept our help and experience.
Q: How can this site help after treatment?
A: The same reply (as immediately above) applies so read that. It is a matter of education, not self-diagnosis. By reading and talking to people, you learn and you can gain control again.
Q: What is your story? How did you deal with it?
A: I was diagnosed in November 1999, with a PSA of over 1000, he said to make others feel lucky. (laugh) On that day, I started a journal and made entries virtually every day. I also wrote some essays about my treatment and how I lost my identity as a man, telling how I went out the bottom and then regained myself with the decision to create this site. I am posting the essays to a section that tells my own story, not that they are "the answer" or that my situation is any model for anyone. But maybe they might spark something in another or give them hope that prostate cancer is not the end of your life as a man.
Q: So you are using this site too?
A: Absolutely. There is (or was) a TV ad in the US about a "hair club" for bald or balding men. The non-bald pitch man in the ad is the president of the company. At the end of the ad he says, "I'm not only the president" and holds up a picture of him bald and says, "I'm also a customer." That's my approach to this site. I created this site because I am still dealing with these issues. I have already learned much from others and expect to learn more because I am making this journey with the very people that I hope will visit this site.
Q: There was a positive side to your treatment?
A: I have had incredible insights into myself, my life and my relationships that (I feel) have made me a much better person, the person I should have been much earlier in my life. That is the nature of such a disease. Some people fall apart. Some create lives more fulfilling than anything they could have imagined. I consider myself one of the latter but it wasn't that way early on.
Q: How did you overcome the dread that cancer creates?
A: I don't pretend to be free of it. But I keep getting stronger. To be blunt, when I first read stories about and from people saying they had overcome and told me how to do it, I resented their advice. They would say, "Have a good attitude!" or "Be positive!" but I felt like someone trapped and injured in a car accident and the last thing I needed while in the wreckage was that advice! So I won't give it. Others do better at that than me. Read the stories. Get on some support lists. Muster what you can to get through the days and watch what will catalyze you. It may be a story, a companion, a TV show, a support group, a book and one day it might happen at the oddest of times. Just know that it can happen. Then you can tell your story to help others, who won't believe you either. That's how it works. Reach up to get a hand and then someday, you can reach down to help another.
Robert Vaughn Young
robert@phoenix5.org
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