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Jim Marshall (not a doctor) said ...

In short

The Australian Advanced Prostate Cancer Support Group is ending. Members should join one or more of PCFA, HealthUnlocked, or Facebook. Details are below, links at the end of this post. Volunteers are available to help you if you need that. The forums will remain online for some months in archive (read-only) format for members to copy topics to their own computers, perhaps to post their stories to their new service.

More detail

When I was first diagnosed with a large, aggressive, locally advanced prostate cancer there was a great need for men and their partners to be able to help each other cope with advanced prostate cancer diagnosis and treatment - but no way to easily do this.

Nearly 11 years later, there are many more ways for people to get that support - more resources online, more prostate cancer nurses, cancer council phone support and so on.

Key people who have seen our enterprise grow from strength to strength in that time are now a decade older. And in that decade, ageing key software that runs our systems has become more difficult to support, and lacks modern user features found in newer systems.

Your Executive Committee has decided that the time has come to disband the Australian Advanced Prostate Cancer Support Group, and to move the support to other places.

Substitute for our forums

Your committee particularly recommends one or more of:

PCFA Online community

Pro: Totally Australian focus. Careful moderation and content creation by PCFA. A wide range of support materials including a blog and videos.

Con: Limited forum type activity, New topics and replies are not sent out automatically, unless you have chosen to contribute to, or follow, that topic on the website. So, very little email. No private messaging. Your own posts don't show on Google

HealthUnlocked Advanced prostate cancer

Pro: The only choice that is exclusively for advanced prostate cancer. Very strong forum type activity. Strong content control by Malecare moderators. Daily email summary of posts. Post something useful, people doing a Google search will find it. A number of 'champions' who are very well informed and very active.

Con: USA focus, but a number of Australian members already

Facebook groups 

Prostate cancer support Australia (open to all)

Prostate cancer partners Australia (carers only)

Pro: Australian focus, Facebook familiar to many.

Con: Content control more difficult

Substitute for our phone-in meetings

AnswerCancer (AnCan) High Risk/Recurrent/Advanced Prostate Cancer (weekly)

Pro: Use phone to Australian number or computer to discuss issues.

Con: No written exchange. USA focus.

Substitute for our 'Talk to a man'

There will be no easy link to talk to Jim, or a member he includes in the call, any more.

But, getting to talk to anyone else in whichever group you join is very similar to what you did on our forums:

  • Click on the person's name.
  • Choose to send a private message asking if they are happy for you to phone them. (Include your own phone number and brief reasons you wish a chat.) 

Jim

  • JimJimJimJim.com will return to being my personal site. I will leave the links to the suggested alternatives below on my home page for a very long time.
  • I will still run the JimJimJimJim YouTube channel.
  • I will participate on a personal level, but in a more limited way, in prostate cancer activities, including in the PCFA Online Community, HealthUnlocked, and perhaps AnswerCancer, and Facebook. I will continue  as an Associate Investigator on seven projects for the Australian Prostate Cancer Research Centre.
  • I would hope to continue to be involved with PCFA activities where my experience may be helpful.
  • When this dreadful virus clears, I would hope to resume visits to local Prostate Cancer Support Groups.

My thanks

Wendy 

If you have met me at events over the years - from mid-2009 to March 2020 - I would most often have had Wendy at my side. Her support and understanding was critical to my contribution.

Executive committee members

Euan Perry

Dr Bruce Kynaston

Tony Maxwell

Neville Black

Alan Barlee

Barry Elderfield

Steve Cavill

Member volunteers 

Volunteers who typed up minutes of guest speakers, subtitled YouTube videos, chauffeured me to local group meetings, assisted with YouTube video recording, travelled great distances to take part in advocacy for new advanced prostate cancer treatments, and so on.

Contributing members

Members who contributed to the forums - with their story, a reply to help someone else, some useful information they had come across, or a question that needed answers. It is the quality of the contributions that gives the most help to other members. It also helps many non-members around the world. (When we stopped counting visitors in 2016, there had been more than 500,000 views of the forums. The peak was 1,454 people online at the same time on November 29, 2018. The top post had 87,051 views over time.)

PCFA

We started in 2009 as a few members of PCFA who needed more than the local group could provide. We formally affiliated two years later, beginning a tight relationship which helped us thrive. A few years later, they took over funding the forums - a relief to Wendy and I.

Finally

There is nothing more rewarding than being part of a group of people determined to help others.

My heartfelt thanks to all of you who joined me to make this one of the most rewarding ventures of my life.

Thank you.

Jim

... very final end Jim

Links

PCFA Online Community

HealthUnlocked Advanced Prostate Cancer

Facebook prostate cancer support Australia (open to all)
Facebook prostate cancer partners Australia (carers only)
AnCan High Risk/Recurrent/Advanced Prostate Cancer

 

If you need help with joining one of these groups, click on this sentence and I will connect you to a volunteer.

 

From today, you will not be able to post more topics.

This is the only topic you will be able to reply to.

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Skipper

To Jim and committee:

I would just like to express my deepest appreciation for all the work you have done
I personally have read and learned much about this disease and found comfort in that knowledge

When the medical profession left me wanting, it was the JimJimJimJim forum I turned to for support

And to socialize with a group of men who understand our mental state has always been a plus 

I could go on about how Jim would not accept a membership fee to our elite "club" but there would still be much unspoken

Suffice to say you have provided a wonderful service which I doubt will be matched in the foreseeable future

Thank you seems too cheap but there is little else to say - God bless you all

Best wishes for the future

Noel

 

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PeterH

WOW!

Jim, you've always given us much to think about, but never more so than today.

JIMJIMJIMJIM has provided a fantastic service and I'd hope to meet you when we could agree on just a few more details. I really wish I'd known of your site earlier in my journey.

Thank you so much.

 

Peter

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Exleco

I would like to second Skipper,s comments , I could not have said my personal thanks any better and wish Jim and Wendy all the best in the future and thank you for your exceptional efforts , they have been a comfort to so many men over many years , and Jim  , Your message re  the personal rewards and a deep sense of purpose that comes from being part of a group and organisation that helps others . John Daven

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Kevin Martin

To Jim and the Executive committee,

Thanks to all for a job well done.

It has been a very informative and helpful site to visit over the years.

A bit sad to see it go but all good things eventually come to an end.

Thanks again and all the best to everyone in their endeavours to fight this mongrel problem that we all have.

All the best to everyone.

Kevin Martin

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Patrick Turner

Thanks for the group Jim, its a sad day.

I spend a lot of time at HealthUnlocked which is based in US, and there are more members who seem to make more posts so there's a bigger flow of useful info. However, in some ways much treatment men want to know about is more readily available here in Australia. But I have learned quite a lot here. By-bye everyone, it was nice to meet you all.

Patrick Turner. 

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Bruce

Thanks Jim for the terrific contribution you have made to improving our understanding of prostate cancer and how to deal with it.

Very best wishes for the future.

Bruce

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Peter

Many thanks to Jim and the Team for the fantastic work that you have done over the years. You have really made a difference to the lives of many men and their carers who are touch by Prostate Cancer. take a well deserved rest.

Adieu, brother and online friend.

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Janis Kinne

A heatfelt thanks to you Jim together with your executive team.  The monthly phone calls have been a great source of Australian relevant information for we advanced PCa travellers.  A unique group with a unique collective knowledge that will be very difficult to replicate.  I have learned a lot from you guys and and have enjoyed our local get togethers.  Very sad that it has all come to an end.  A very sincere thankyou  for your team's collective effort to provide a forum not available with the same Australian focus elsewhere.  All the best for the future to all involved.

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Fergie

Well done Jim – you’ve put in a lot of hard work and done a great service to we PC patients. All the very best.

from: Tom Rae  aka ‘Fergie’

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Euan

Extremely well done Jim. 11 years is quite an effort and very much appreciated by all who sort reliable advise. I was glad to be there at the beginning to assist in my small way but as you know other health issues got my attention. Your computer skills were also put to excellent use which got the attention of not just PCFA top brass but posts and especially YouTube would have been accessed from all over the world. 

A remarkable feat.

Euan

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