YANA - YOU ARE NOT ALONE NOW

PROSTATE CANCER SUPPORT SITE

Robert Young's Story - 25 July 2000

RobertYoung and his partner Caren come from Cincinnati Ohio, USA. Robert was 61 when diagnosed in November 1999 with a PSA (incredibly) of 1000+, Gleason 7 and Staging M1. Comment from Urologoist "aggressive". Robert continues...

I like to go to support group meetings and ask: "Who thinks they had a high PSA at diagnosis?". Someone will raise their hands and no matter what number they give me, I say, "Try a MAN's PSA..." and tell them mine was over 1000 and we don't know how high, as the lab stopped counting there!

When I was diagnosed the end of November 1999, I had crippling pelvic, leg and back pain, and I mean crippling! I could barely walk. I thought it was an arthritis that I had inherited for my mom who had three hip replacements. So I figured I might as well go as long as I can before I get them replaced. Then I was told it was very advanced and aggressive (cancer). Bone scan showed it was in the pelvis, ribs, spine...oh heck, lots of places. I was put on hormone therapy (HT) and for the first time in years, the pain dissappeared and I could walk, sit and best of all, sleep. But the HT took a serious toll. What was left of my sex drive (one doesn't have much when in chronic pain) was taken away with the HT and finally in mid-February 2000, I had a complete meltdown. I felt I had been degraded as a man and now I was going to die. It was too much for me to handle and I came apart.

I remember it well. I could feel it coming and I was trying to wash dishes to distract it but it took me over and I slowly sank to the cold linoleum floor of the kitchen and cried my guts out. I don't know how long I was there but all I could do was cry and curse this beast in me and wish I was dead. Finally, by some good stroke of luck or fate or resiliency or sheer stubborness, I got up, washed my face and went out on the porch alone and sat looking at the trees and realized no man should have to go through this crap like this. That was when I came up with the idea of a Web site that would address this exact problem, to give other men (and their companions) some idea of what it is like and what they might do to regain or keep their masculine identity.

My website is now online. Please drop in for a visit!

People asked me about the name, as to why I didn't use the "prostate" or "cancer" in the name. I said I am not going to name my site after the beast that is trying to kill me. Second, the "phoenix" is after the mythical bird that rises from its own ashes. That is what I did in February. I needed something to set it apart from the million other "phoenix" names on the World Wide Web so I added a "5." It is a good number and we use it a lot, as in "high-5", "gimme 5" and "take 5". Also 5 in Roman numerals is V and that stands for Victory. Basically, I just wanted a name men would be comfortable with and I hope it works.

The site is unlike others in that the emphasis is not on diagnosis or even treatment, but the effects. It will rely on first-person stories of men and their companions dealing with the deepest personal/gut issues created by PCa treatment, from impotence to incontinence, the very issues that men feel degrades them as men. At current count, I will have around 400 such stories. They were gleaned from lists and Web sites, all with the person's permission. Sometimes, names were changed. But the idea is that those of us going through this know what it feels like. I wanted to hear their stories and for them to be shared with others. Some are good. Some are bad. But they are real people like you and me who are going through or have gone through Hell. I will put some of my stuff on there too, including some essays about my meltdown and my feelings about masculinity. My problems aren't solved. But maybe my site can help some others. Pay a visit and say hi or you can just write me from here.

Good luck.

Robert Young.

Sadly, Robert passed away in November 2003. He is missed by all in the prostate cancer world who knew him. His website is a fantastic legacy and his Journal is well worth reading. His story is left here to encourage everyone to visit his site