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YANA - YOU ARE
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CANCER SUPPORT SITE
men need enlightening, not frightening
have lost two good men
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.
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.
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
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.
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
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