Prostate Cancer Survivors

 

YANA - YOU ARE NOT ALONE NOW

PROSTATE CANCER SUPPORT SITE

 

 

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Publication of A Strange Place

Well, that’s one job I’ve done – re-writing and updating my booklet A Strange Place.

I thought some of you might be interested in the genesis of this little project.

About 10 years ago a young lady posted to a forum like this one asking where she could find downloadable information for her parents, as her father had been diagnosed with prostate cancer. At that time the resources on the Web were not as developed as they are now and we realized that there was no site that provided a succinct and simple overview of the disease and treatment options. So a bunch of us decided to write one between us.

As matters developed, a great prostate cancer activist – Donna Pogliano – took over the project, with a number of us, including Robert Young providing input and in due course Donna produced her online piece - A PRIMER ON PROSTATE CANCER. During the time she was writing this, she had a good deal of contact with Dr Stephen Strum, a well known oncologist, and between them they decided to expand the basic article into a full blown book - A Primer on Prostate Cancer. The Empowered Patients Guide. (ISBN number 0-9658777-6-0)

Although I think this is one of the best books available for men who want a good understanding of the disease, my personal view was that both the book and the Web piece were still a little more technical than I had envisaged for newly diagnosed men, so I decided to go ahead with my own project. I didn’t want to distract any attention from Donna’s excellent work, so I focused on informing South African men, as I was living there at the time.

I put my booklet up on the YANA site and called it A Strange Place because as Robert Young said so well a prostate cancer diagnosis is like being dropped, without your consent, into a new country with a language, customs, terrain, roads and rules which are all foreign. You are in a Strange Place, and it’s frightening.

In addition to the web version I printed off a supply of the booklet for distribution via our support group – and local urologists and oncologists – to men who had just been diagnosed and who did not (or could not) access the Web version.

I believe that there is still a need for something like this – the median age for diagnosis has dropped since PSA testing was introduced, but it is still around 65 and many men over this age are not computer savvy. So I have now updated and internationalised the booklet and am about ready to have it printed and to upload it onto the site. Before I do that I thought I might ask for a bit of help if any of you have an hour or so to spare:

Could you download a Word.doc copy from 2008 STRANGE PLACE and

1. proof it for typos – please ignore differences between UK and US English spelling
2. identify any aspects that need clarification, bearing in mind the intended audience – newly diagnosed men and their supporters

mailing me at my e-mail address above with any suggestions

I want to get the material to the printer on Tuesday or Wednesday next week, so if you could do it sooner rather than later, it would be good.

Thanks in advance

Terry in Australia

Re: Publication of A Strange Place

Terry,

Thanks. A great read. It is a very complete discussion of the topic. I have emailed you with a few typos.

Paul A. USA

Re: Publication of A Strange Place

How I wish something like this had been available when my husband was diagnosed last November with T1C Gleason 8 (4 + 4) PCa! Instead we were rushed through the consult with the urologist, handed a copy of Walsh's book - great if you were looking at surgery but sadly lacking in information on ADT - and sent on our way.

Have you given any consideration to adding a section directed at spouses, significant others? It's been said over and over that this is a 'couple's disease' or, as Leah puts it, "wives get prostate cancer too", but too often we really feel isolated from the whole process. I've gone through more stress and depression than my hubby!

I'm emailing a copy of your publication with a few suggested corrections/additions, etc.

Keep up the good work!

Kay

Re: Publication of A Strange Place

Thanks to all you good people who have responded to me. I'll be absorbing your suggestions and will be responding to you individually in due course.

So many good ideas may mean a bit of a delay in publication :- ) but keeep them coming - the more the better.

All the best

Terry in Austra;oa

Re: Re: Publication of A Strange Place

Hi Terry,
The manuscript is excellent and does a fantastic job of giving those who are just diagnosed with prostate cancer a place for understanding and alleviating so many of their worries.
I will e-mail you some corrections that I found.

Re: Publication of A Strange Place

Hi Terry,

What a magnificent document! This is exactly what newly diagnosed people need to read.

I can only stand back in admiration at the time and effort you've put into the PCa cause over the years.
You are an inspiration, and I for one will never forget that my first search of the internet after my diagnosis in early 2005 brought me to this site.
The rest, as they say, is history.

Well done and congratulations. Don't forget that bet is still on that we celebrate your 20th year here!

Very Best Wishes,

George

Re: Re: Publication of A Strange Place

Thank you for your kind words, George. I feel a bit bad about having a 9 year lead on you - not sure I'll be around still when you hit your 20 year target - 84 still sems quite old to me - but that may be because I'm not 83 yet!! You'll recall the old joke "Who on earth wants to live to 90?" "The person aged 89"

All the best

Terry

Thank You All

I just wanted to thank all you good folk who sent such valuable input about the first version of my booklet. Working as a committee of one has some advantages, but it can also lead to a pretty one eyed focus on some issues.

I was hoping to get down to printing this week, being a bit cocky about how good the first version was, but my pride has had to take second place: -) and now we have vistirs arriving tomorrow evening, for four days, so I have run out of time this week.

I have put a pdf version of the booklet as it is now – substantially improved, I think – but no doubt with some errors – I have just thought of one – because I just haven’t had time to check it right through. It is here A STRANGE PLACE and if any of you want to download it and make any final comments, that’d be fine by me.

One other point. Have any of you any ideas how to get the word out to try and ensure that people who might benefit from this publication – the newly diagnosed and their supporters - get it when they need it most – when they have heard the crushing news of the diagnosis.

All the best

Terry in Australia

Re: Thank You All

Terry, there is one additional comment I would like to make. I looked at the beginning of this site and pressed the "don't panic button" but I could not find this pamphlet anywhere in those 6 pages. Might I suggest that you place it promenantly on that first page after the button is pressed as well as include it on your home page. As everyone has already pointed out that it is such an important and well written document for newly diagnosed men that it should be almost the first thing they see. Make sure to clearly identify it as a basic information source. This would help so many to quickly overcome the fear and anxiety from being told that they have prostate cancer.

I realize that the six pages of the introduction has alot of the same information plus additional information. However, being able to print out this basic information pamphlet would allow families and spouses to sit down and read it together. As they read, they could forumulate questions for the urologist at their next meeting when the urologist begins to discuss the man's options for treatments.

Re: Re: Thank You All

Thanks for that TV. It is something I have long considered but have rejected it so far because, as you say there is a good deal more information, through links etc on the site that I would like newbies to see. If the make it through the the Resources page they will find a link to the current version of the document.

But having said that, I would appreciate views from other people - do you think the link should be closer to the beginning of the site?

Thanks

Terry

Re: Publication of A Strange Place

A superb effort Terry which will prove invaluable and a great source of clear and simple information to the newly diagnosed. You are worth your weight in gold.
Bill

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