LETTER #3 - GO TO INDEX FOR EARLIER LETTERS . YANA - YOU ARE NOT ALONE NOW PROSTATE CANCER SUPPORT SITE

Prostate men need enlightening, not frightening September 25, 2011 We have lost two good men Sadly we lost two of our number - and their passing shows how difficult it is to predict just what path this disease will take. George Hardy also lost a dear friend, Phil. Phil never quite got around to puttting up his story - I think he was too busy helping other men. I know George will miss him keenly. Tim Barber was diagnosed two years ago at age 40 with what turned out to be a very aggressive form of the disease and he was hoping Provenge would help him after the failure of his RALP (Robotic Assisted Laparoscopic Surgery). It didn't and he passed away at the shockingly young age of 42. Derek Bird on the other hand was diagnosed fifteen years ago, coincidentally in the same year as my diagnosis. He battled his disease over the years with EBRT (External Beam Radiation), ADT (Androgen Deprivation Therapy) and Chemotherapy, but in the end his body let him down. Our thoughts and condolences go to the families and friends of these brave men at this sad time. Passing on The loss of these two courageous men led me to think that it might be worth raising the issue that we will all face in the end – our own passing. Hopefully this will be later rather than sooner and will, like the majority of men, be from something other than prostate cancer. Surely I was not alone when, after my diagnosis, my early thoughts were “How long have I got?” “What is it like to die of this disease?” It was not easy to find the answer to these questions together with other questions that came to mind, like – “How many men die of this disease after they are diagnosed?”….and so on. I put these questions to the Forums I could find, but there was always what might be termed a deathly silence whenever the subject was raised. Despite the fact that fear of death was the main motivator in undergoing testing and choosing appropriate therapies, no one would talk about it. It was simply off limits and was indeed The Elephant In The Room, which was the title of the piece I wrote. I think it is worthwhile reading it and especially printing off a copy of the paper prepared by Charles (Chuck) Maack dealing with some practicalities of our passing on – whether that is from this disease we share or from any other cause - which is linked from the relevant page. Do you read or view? We tend to have a preferred way of gathering information. I personally would rather read than watch a video. I am able to scan articles or books very quickly to see if they will be of value to me, and then go back to absorb the relevant material more slowly. But you have to watch the video right through before you can assess it's worth to you. I know other people have different views. Sitting comfortably in their armchairs they feel they can watch what the presenters have to say in videos and weigh up, by looking at them, whether what is being said is, as we might say in Australia, 'fair dinkum'. Is this someone presenting good infomation or a shill trying to sell me something? Here are my choices for both books and videos. They are biased because I wrote one booklet and helped as 'an informed patient' in the writing of the other two. I have 'known' the two doctors who present the videos for many years and feel you can't get much more 'fair dinkum' than them. In saying this, I am not insinuating any kind of ulterior motive to any of the other doctors who have shared their views and advice in print or cyberspace, but I feel very comfortable with the advice I have seen given by Dr Chodak and Dr Myers. A Strange Place: This is my booklet aimed at providing basic information to build on. Winning the Battle Against Prostate Cancer: Get The Treatment That's Right For You: Dr Gerry Chodak's book provides more detailed, more medically focussed facts A Primer on Prostate Cancer:The Empowered Patient's Guide : Dr. Stephen Strum and PCa activist Donna Pogliano authored this excellent book which gives an insight into the technical issues of the disease. Dr Chodak also has a series of videos at Prostate Videos: while Dr Charles "Snuffy' Myers has some interesting ones at Ask Dr Myers: Using the myProstate site If you have not transferred or put your story on the myProstate site yet, please do that now. Although men are genetically unwilling to read instructions, try reading this Using the myProstate site - it will help what seems to some a complex process. Please pay particular attention to Creating Your Story and Ordering Reports Useful Links - including a FaceBook one Subscribe to this E-Letter Choosing A Treatment YANA Experiences Index Survivors Talk About Prostate Cancer YANA Forum Come fly with me. A number of you folk have kindly mailed me wishing us well on our travels next month - we leave Tuesday (our time!). Some have asked where we are going and have said they'd like to know how the trip goes. Although I have put up pictures of previous jaunts on FaceBook - see for exampleWinter Tour 2011 I have now started a blog at Travels With My Wife. I'd be happy if you joined me on what looks as if it will be a great trip.

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