Breast cancer support group - help on sharing sensitive pics privately please?

[Daysleeper40]

Hi All,

Wasn't really sure where to post this so sorry if it's in the wrong section. I'm hoping someone can help me with an idea I have please...

I have been undergoing treatment for breast cancer for the last 18 months or so and belong to a private group on Facebook called the Younger Breast Cancer Network. It is specifically for younger ladies with the disease as we are quite rare in the word of breast cancer and have quite unique issues compared with older ladies who are diagnosed. I've found the group a MASSIVE support and one of the things that is amazing is the willingness of members to share pictures of their breast cancer surgery. There are various types of surgeries and reconstructions that you may be offered and it can be very daunting to have to choose between them. It is also a big help knowing what to expect before your surgery as from personal experience - I can confirm that having your boobs lopped off is a touch traumatic!! Anything that helps you prepare is a good thing.

The pictures I was shown by the NHS nurse were not very encouraging and also didn't really cover the different stages - just the finished product. Without my friends in the YBCN Group I would have had no idea what to expect on waking up from my initial surgery.

Anyway - the point is that I would like to set up a way of members of the group sharing surgery photos in a controlled and private manner. At the moment anyone who is willing just emails or messages the other person, but I think it would be great to have a central bank of pictures with examples of each type of surgery and what to expect at each stage. I am happy to administer but this is obviously sensitive stuff and I want to make it as secure and easy as possible. I can see the option for a private group on flickr - is this my best option or does anyone have any other suggestions?

Any help gratefully received!!

Fi

 

[Gary Coyle]

Set up a free Zenfolio account and password protect everything, you can then give members the account login details to upload and create their own password protected photo galleries

Sounds really simple but as im a Zenfolio user it would do.

 

[Daysleeper40]

Thanks Gary - I've never used Zenfolio at all but will definitely look into that.

 

[BRASH]

I have no idea of what you ask but I wish you well in your recovery (and all others with the disease too).

 

[Forbiddenbiker]

Wordpress is your answer...its an on-line self publishing software that you and and the group can fully interact with from any location,

http://wordpress.org/

Its free, its powerful and fully secure, full administration panel, multiple users unlimited numbers, multiple access rights... it will do all your require, plus loads more.

To run it you need, a domain name, a cheap hosting space, then simply down load into your space and its ready to work.

Just ask me for help if you need it.

 

[Steve Smith]

Another method could be an un-published Facebook page. If it's un-published, only the administrators can see it. You just make every member an administrator.

I did this with a page for our band. We use it to post Youtube videos of songs we want to learn. We can all post and no one else can see or find the page.


Steve.

 

[Daysleeper40]

I have no idea of what you ask but I wish you well in your recovery (and all others with the disease too).

Thank you - appreciate that

Wordpress is your answer...its an on-line self publishing software that you and and the group can fully interact with from any location,

http://wordpress.org/

Its free, its powerful and fully secure, full administration panel, multiple users unlimited numbers, multiple access rights... it will do all your require, plus loads more.

To run it you need, a domain name, a cheap hosting space, then simply down load into your space and its ready to work.

Just ask me for help if you need it.

Thank you Adam - I actually have a Wordpress blog as it happens. So would I be able to make this a private 'members only' type thing? I'm a total noob at this so forgive me - but where does one get a cheap hosting space from?

Another method could be an un-published Facebook page. If it's un-published, only the administrators can see it. You just make every member an administrator.

I did this with a page for our band. We use it to post Youtube videos of songs we want to learn. We can all post and no one else can see or find the page.


Steve.

Thanks Steve - the only issue with this is that Facebook won't allow the surgery pictures. Not sure they would ever know if it wasn't published though? Not sure I like the idea of everyone being an admin either though to be honest.

 

[SarahLee]

Zenfolio and Wordpress have already been mentioned, but I've also used www.yola.com and I'm sure there are others.
All allow a free start-up option and password protected pages / galleries.

Should be better for what you want than Facebook etc.

In fact, I've never tried it, but I'm sure there's also free bulletin board / forum software out there that may be worth looking at. That would allow you to control access and also make it all a bit more interactive at the same time

 

[Forbiddenbiker]

...



Thank you Adam - I actually have a Wordpress blog as it happens. So would I be able to make this a private 'members only' type thing? I'm a total noob at this so forgive me - but where does one get a cheap hosting space from?



....

Yes it does all that Fi. Don't think of it as a blog as your not using it that way, its now a private access website to members private information only.
You can assign various levels of access to members new or old, admin, editor etc, plus new members can sign up and await approval etc ...also you or your chosen members can assign various levels of viewing access like public/private to their own post or others ...or you can hold all posts for vetting before its published privately, etc.
So for your idea id guess the whole internal images thing would be private for members only, some admin, most editors Id suggest, with private viewing set for most of the posts or pages produced by these members. However you may also want a front page saying what your doing and offering support to others. plus and allowing new members to join, or simply needing to add other public pages as you progress, or not, whatever works for you you'll find it can do it.

All hosters peoples do basic packages, just pick one they are all about the same, it doesn't mater where is hosted..... WP needs a SLQ? data base thingy, which is pretty standard for all,...take a look at the link I gave you, its all their, including recommendations.

If you already have a blog you could in-fact use that, invisibly tacked on use's so to speak. ....In effect you could be producing new pages/post that are not for public viewing, and can only be viewed and read by logged in approved members. ..all you have to do is get them to sign up on your blog, approve them as private viewers to certain private pages and you have your idea working for real. (plus you can set No-robots and cache so that google and such don't index your private pages...this means no one can ever find them if they are not a full member.)

----

Face book is a clever idea but I wouldn't trust the owners not to change settings and things behind your back and suddenly you girls find your bosoms all over the internet.

 

[Daysleeper40]

Yes it does all that Fi. Don't think of it as a blog as your not using it that way, its now a private access website to members private information only.
You can assign various levels of access to members new or old, admin, editor etc, plus new members can sign up and await approval etc ...also you or your chosen members can assign various levels of viewing access like public/private to their own post or others ...or you can hold all posts for vetting before its published privately, etc.
So for your idea id guess the whole internal images thing would be private for members only, some admin, most editors Id suggest, with private viewing set for most of the posts or pages produced by these members. However you may also want a front page saying what your doing and offering support to others. plus and allowing new members to join, or simply needing to add other public pages as you progress, or not, whatever works for you you'll find it can do it.

All hosters peoples do basic packages, just pick one they are all about the same, it doesn't mater where is hosted..... WP needs a SLQ? data base thingy, which is pretty standard for all,...take a look at the link I gave you, its all their, including recommendations.

If you already have a blog you could in-fact use that, invisibly tacked on use's so to speak. ....In effect you could be producing new pages/post that are not for public viewing, and can only be viewed and read by logged in approved members. ..all you have to do is get them to sign up on your blog, approve them as private viewers to certain private pages and you have your idea working for real. (plus you can set No-robots and cache so that google and such don't index your private pages...this means no one can ever find them if they are not a full member.)

----

Face book is a clever idea but I wouldn't trust the owners not to change settings and things behind your back and suddenly you girls find your bosoms all over the internet.

This sounds like the best way forward - thank you for taking the time to explain. Think I will keep it separate to my blog and absolutely keep it to approved members only. Loving the no-robots and cache point as well. I'm totally with you re Facebook too - I don't trust the security settings enough to be splashing members foobs (fake-boobs) about the place!!

 

[Daysleeper40]

Zenfolio and Wordpress have already been mentioned, but I've also used www.yola.com and I'm sure there are others.
All allow a free start-up option and password protected pages / galleries.

Should be better for what you want than Facebook etc.

In fact, I've never tried it, but I'm sure there's also free bulletin board / forum software out there that may be worth looking at. That would allow you to control access and also make it all a bit more interactive at the same time

Thanks Sarah - I think I'm going to run with the WP idea for now as I'm already vaguely familiar with it. I'm not too worried about the interactive element as the FB group itself pretty much covers that - this is more info based tbh.

 

[magicaxeman]

I hope things go well for you Fi, my niece developed lumps in her breasts @ 19 followed by biopsy & lumpectomy, diagnosed as a benign form of tumour but sadly they've returned and shes now awaiting more biopsy results.

 

[Gremlin]

No real help here Fi, just hope everything is going ok for you
Having recently had an older friend diagnosed with malignat rumours following screening it's a subject very close to at the moment
I have been lucky so far despite a couple of scares I'm still clear

 

[toadstool]

If you do it on your group, it's just one click away for everyone and anyone can upload an album of photos and, because it's a private group, the only way facebook would remove them was if someone reported the photos to them.

Hope everything goes well for you and the rest of your friends!

 

[Daysleeper40]

I hope things go well for you Fi, my niece developed lumps in her breasts @ 19 followed by biopsy & lumpectomy, diagnosed as a benign form of tumour but sadly they've returned and shes now awaiting more biopsy results.

Really sorry to hear that - waiting for results is a horribly stressful time. Of course I hope she won't need it but if she does, the public page of the FB group is here:

https://www.facebook.com/#!/ManchesterYoungerWomensBreastCancerNetwork

As I said - I've found it of enourmous support and we do have members as young as 20. The rather rubbish qualifying criteria are to be under the age of 47, living in the UK or Ireland and have a BC diagnosis (including DCIS - does not have to be invasive). She would just need to message the admin to join. In the nicest possible way - I hope not to see her there though!

No real help here Fi, just hope everything is going ok for you
Having recently had an older friend diagnosed with malignat rumours following screening it's a subject very close to at the moment
I have been lucky so far despite a couple of scares I'm still clear

Thanks Ingrid - had the second stage surgery for my recon on Wednesday just gone so am pleased to have got it done, but am a touch bruised and battered all the same! Think 5 operations / general anesthetics in just over a year are catching up with me - definitely not bouncing back quickly this time. Sorry to hear about your friend - wish her well with her treatment. If she is under 47 please pass on the FB group details to her. Long may you stay lucky xx

If you do it on your group, it's just one click away for everyone and anyone can upload an album of photos and, because it's a private group, the only way facebook would remove them was if someone reported the photos to them.

Hope everything goes well for you and the rest of your friends!

I know what you're saying Toni but the Admin don't want to flout the Facebook rules and risk the group being shut down - it's not really my decision but I tend to agree with them anyway. It is also something you need to be prepared for and want to see - when you are very first diagnosed you don't necessarily want to have to deal with photo's of what is going to happen, and not everyone is in the right place for it. We wouldn't want random unsolicited mastectomy pictures appearing in peoples news feeds - that can be a bit of a shock to the system!