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To All Members

PostPosted: Fri May 14, 2010 11:00 am
by sharon
To All Members

Sadly, I have seen many newcomers come onto the forums looking for support and finding none. Remember, this is YOUR forums. Your participation and willingness to share your own information and support with others can make the difference. Please participate in the forums !

New?: How To section: --> Click Here ..... There, you will find basic usage help: --> Click Here

And, an Introductory Post How To: --> Click Here

Remember, You Reap What You Sow. If you help others, they will, in turn, help you.

Re: To All Members

PostPosted: Sat May 15, 2010 5:12 am
by debjo
That is so true, Sharon. We should all think about how we felt when we got that rare cancer diagnosis. I know I was scared and confused and this site was a blessing. We have a responsibility to help others through that difficult time as well.
I hope you are seeing a steady improvement in your healing. I have been praying for you.
God Bless!

Re: To All Members

PostPosted: Sun May 23, 2010 1:43 pm
by phullon
Thanks for your feed-back. If there are moderators for Phyllodes that are not willing or able to do what is expected maybe they should step down. Exactly, what all is expected of a moderator? Maybe, the job could be split between several persons with the same diagnosis. Why not have assistant moderators or a "buddy system" and a schedule could be set-up and rotated on a bi-weekly or monthly basis. That way one person would not get overwhelmed. The last thing I'm sure we all want is a person seeking information about a rare cancer and not being able to obtain it due to lack of moderators. The assistant moderator or "buddy" could be assigned to each new memeber. The duties could include but not be limited to:
1. Contacting them at least weekly.
2. Helping them seek additional resources
3. Getting them the introduction packet (to be developed)

These are just somethings the buddy could do. I'm sure we all received information from our health providers that could be benefical to others. I have information that include the following:

A. Hope---- Cancer Support- helps people with cancer, and their loved ones, find their own way through the life-changing impact of a cancer diagnosis
Contact Info- ? Not sure if I can list this
B. Caring------- a resource that allows people with cancer to set up a web-site in which friends and family can find out how you are doing without the numerous phone calls

Both of these resources are free to people with cancer. These are just (2) resources out of many that are available to people with a cancer diagnosis.
There are also resource information for people that live in other countries.

I think it would be nice to offer this resource information to the members of the "Rare Cancer Alliance"

Let me know how I can help? I'm willing to be a "buddY" . If there are others willing to help. Please let Sharon know.


Re: To All Members

PostPosted: Sun May 23, 2010 4:46 pm
by sharon

: thanks : for participating in this topic. You have brought up some excellent points.

About the sharing of information, please keep in mind that not all cases are alike. Although having multiple surgeries and radiotherapy worked for me, I cannot suggest that this is what every person with my rare cancer needs. Some will need much more than that, depending on the body site, size, growth rate, etc. of their tumor. But, I can share my own story and if many people with my diagnosis do the same thing, then at least the newly diagnosed members can go to their initial appointments armed with good questions.

About the Moderators, buddies, etc.; at the top of each Rare Cancer Alliance forum is an announcement asking for volunteers to be Moderators. I took the one off of the Phyllodes, but have entered it again today. I agree with you. Help for the newly diagnosed is the primary purpose of these forums and this website. Always has been. But, I cannot force others to volunteer.

We do have one forum (Anal Cancer) that runs exactly the way that you mentioned because there are several volunteers helping there. And, because that help is there, it is a very active forum where information is shared openly. It is a great example of what support, person to person, can accomplish in the rare cancer community.

About the website building; I started a blog section for the website a few years ago and tried to get people to participate in that. They could have their own blog, with their own journey stories that would be of interest for their diagnosis. I got absolutely zero participation. So, creating a website might not be useful to others. Honestly, it is hard enough for me to get people to volunteer to tell their stories publicly (see the website and forums stories sections).

Keep in mind that regular cancer organizations do not necessarily represent rare cancers. Money that is given to the ACS, for instance, does not go to research for rare cancers. And, many of the general websites out there have very general info, if any, for rare cancers. If you look through the forums here that have had good participation, you will find some very detailed info.

Your suggestions have been my 'ideal dream' since I started this website in 1998. But, things have not worked out that way.....

Re: To All Members

PostPosted: Sun May 23, 2010 6:24 pm
by sharon
There is strength in numbers, but we with rare cancers do not have the 'numbers'....... unless we gather together, from around the world, in one central place. I have always hoped that this 'home' would be a place that enables that.