Information is the best memorial!!

[Cathya]

Hi all;

I have been reading and thinking about the ideas of a memorial page, fund raising, etc. to remember those members who have died and this is my opinion.....and I hope to hear more from you all...particularly the lurkers! I am afraid that members who are not so prominent will be forgotten. I am afraid that energy will be gradually turned towards activities that can be better and are being supported by other organizations. My view is very simple.....when someone comes to this site looking for information, help, research.....we jump to it and supply it. There are many who don't post often, or who have just come to the site but are very ill...need ideas and help. To me the best memorial to those gone before is to help those in need now! I am afraid that there are women out there too sick to come online and ask for help or do the research themselves. I wonder about a page for those women.....just post....too sick to research but this is my situation...... The time and effort spent in helping these women would, in my mind, be a very fitting memorial.....until we beat this awful disease.....and we will!!!!

Cathya

[Lani]

there are many kinds of information--anecdotal personal experience, hearsay, and medical and other literature among them. All are badly needed and all take a terrible situation and turn it into a positive experience both for the giver and the receiver of the information. Our information may not always end up being correct (as you see much of what medicine held sacrosanct is being turned on its head) in the long-run (knowledge is increasing quickly although clinically available options move at snail's pace), but by constantly questioning oncologists, researchers, and those "in the know" we cannot help but more things along more quickly!

Knowledge is liberating, although sometimes scary--and the fact that "knowledge" changes may scare others and offers others hope.

Feeling unwell is not the only thing which keeps some from researching, FEAR is another great paralyzer in this regards. I hope the recent passings of Linda and Lyn does not make the "lurkers" freeze up, but rather emboldens them to participate, research, share their stories/info and become more giving/useful both to others and themselves.

I privately emailed some information to Lyn which gave her ammunition and peace of mind and she let me know how greatly it was appreciated.


I am sure she would agree that recruiting lurkers to join in the "mining" of information project would be a most fitting memorial.

Lani

[sarah]

I've found this site invaluable for its information and support. I wonder if some of the more knowledgeable people could put their heads together and do a sort of check list for those newly diagnosed.
Example: DCIS, node involvement, HER2+++, RP+, ER+
ask your doctor about: Herceptin, such and such scans...., AIs,.....

Example: Lung mets, HER2+++, ER-, PR-
ask about........

Would this be helpful? Maybe there's already something printed out from some cancer organization???

Just a thought
Sarah

[Tessa]

Sarah,

I think that is a brilliant idea. Just something basic and simple, and then women can choose to research further, but don't have to if they're weary

[Jean]

This site has more than likely saved my life. I totally agree that the site should and must remain a site for sharing information and supporting one another. The information and connections that I have personally gained on the site have assisted me to conduct my research for the care of my bc and hopefully I have been able to pass some information and help someone also. Even if it is just a day when you connect with another who needs to know that their are people who truly care. Please keep in mind what Joe and Christine began to achieve with the site. There are many additonal avenues for us to reach out to assist other women and their families and build from that starting point. But let's keep our knowledge strong and powerful on this site! We must continue to focus on the daily networking that is being achieved on the site. We can and do offer additional help where it is needed. As Joe mentioned, Al is already working on a beautiful project in Linda's memory and we can touch base with Al and what we can do to assist him. I believe this site is extraordinary in that we are able to connect with others who have first hand knowledge and are exposed to the very issues that most of us face each day.
Jean

[Bev]

Just an aside. I see lurkers mentioned in sort of a negative way. I don't know about anyone else, but I needed quite a few months of reading and processing what was going on with me before I could post anything. I was shell-shocked and knew nothing. Some people need time. This site has kept me sane, the lurkers will come around eventually. It's all good. BB