Apr 07, 2012 - 8:48 pm
Possibly putting together an "Anal Cancer 101" for the newbies? I think that it could start off with we are here to support each other and there are no off limit/embarrassing questions. What do we all say (or think) when someone new posts? "Sorry you had to find us, but we are glad that you did." It could have the links to all the other AC sites and it could also have the nuggets of wisdom such as "Weeks for years", and that it is an extremely curable cancer. Also that it is unlikely that one would get all the side effects (and just as unlikely to have no side effects at all), but most will have some of the side effects to some degree. It could tell about Teresa Mayhew's book and then also list some of our experiences starting from symptoms, staging, PET scans vs CT scans vs MRI's; Ports vs Piccs, tips of the trade (what to eat; what not to eat), stay hydrated, go into radiation with a full bladder, follow up tests, term explanation (DRE, NED) etc.... We would have to say that this is just a compilation of previous posts and is absolutely not a substitute for talking to your doctors, but I do think we have something important to add because we have been through it and we have survived! For example I was aware of Silvadene and Aquaphor (still my best friend!), but I've recently read about Demablast (?) that is used by new mothers and I think there are all kind of good suggestions and new suggestions, but so much of this is the same too. If we could catalogue this info, both new and that that is repeated over and over and send it out to a newbie, it might ease their fears and help for them to see it in one place. (Of course this is coming from me who didn't read ANY of the material my doctors gave me beforehand as far as what to expect. I did listen to them at the appointments however. :) This site was not up when I went through tx in 2009, but I can assure you I would have been all over it if it had been!) I always say knowledge can be power if one so chooses.
Martha, you would have to be involved (if you agreed of course :)), and Rose C. Sandy, Angela, Randy and Chris for the guy's side of things, Azanne, (basically all the regular posters) and anyone else that wanted to participate. If we divided it up and everyone was reponsible for certain sections I don't think it would be too onerous for any one person. We could go through the past posts and gather the info that is given over and over as well as new info. However I'm not sure how we would transmit this type of document to someone. Can you send a private message and exchange emails and then one or two of us could be responsible for sending it out if requested?
Everyone, please let me know what y'all think about this idea. I've been thinking about this for a while, but I will certainly go along with the opinions of the majority as to whether we should do this or not.