re: Superthread

ellamenno

Hi Sweetblood and Skiffin,

My name is Laurie (username: ellamenno). I am a 10 yr survivor of Hodgkins Disease. I originally came onto this site as I had a friend with HNC and another with CRC. Sadly, both have passed Over the months I have become very attached to both of these forums and even tho I don't post often I do lurk every day to see how y'all are doing. SO many great people on both forums. I am in awe of you and several others especially. You have been thru so much but are invariably always there when people need advice, comfort, encouragement, humor and occasionally a gentle, but firm kick in the butt by telling what needs to be told when the newbies become paralyzed with fear.I am writing to you about the HNC Superthread. It has really turned into something invaluable. Thank you Soooooo much for creating it! I wish my Steve (HNC) had had this to gain some knowledge. I KNOW it would have saved his life. You see, his onkyologist (this is what I call him) strongly advised AGAINST getting a PEG placed. Steve was also diabetic and I was concerned that as treatment progressed he would not be able to keep his sugar levels within normal limits. I expressed my concerns to this onkyologist several times but he insisted the PEG would not be necessary. My friend NEVER questioned the doc because he came from the SCHOOL of DOCTOR KNOWS BEST. My friend died 3 weeks into treatments due to diabetic complications. Whenever someone raises the "should I or should I not get a PEG" question I get sick to my stomach. I have never posted my opinion on this because I've feared it would just be too scary for the person asking. But obviously from my point of view my answer would be "GET THE PEG!" My CRC friend died of pneumonia 2 days after his last treatment. He also attended the S.O.D.K.B. What I'm getting at is you and Skiff have done a fantastic job with the soup or thread:) I would like to ask your permission to do something similar on the CRC forum. Janine, (a.k.a. SisterSledge) opened a thread citing your superthread over on the CRC board.I'm hoping there will be someone over there with the expertise to make this happen.Sweet and Skiff, I think you are helping to save lives and even though I don't know you personally, I am soooo grateful for you! I'm sorry you have had to experience all that you have but don't we all wish to derive as much positive as possible from our journeys and gift that knowledge to those who must follow?
Love,Peace and Respect,Laurie

Skiffin16

Awww Thank You....I'll have the Soup
Sorry for your loses, it's truely terrible to lose ones close to you...especially to this terrible disease.

Although Dawn (Sweetblood) is the main person to thank for the Superthread, she has done an awesome job. I just helped her learn some of the code to do the links and make it look a little better to the eye...she's definitely the queen of links.

I made and update the Google map;

Where in the World Are You

It lists several locations of the H&N forum members. I know I have met a few on the board and had lunch, or just visited when they were having chemo. Maybe it's something similar to start also on your boards. I think it's a pretty cool site.

I know Dawn, myself, Hondo and several on here love sharing information and our experiences. I know myself, that I like to give it to you from my history and experience. Sometimes that rubs a few people the wrong way, but overall most people are very receptive and want to have it given to them straight without sugar coating it.

The PEG always spurs contraversy... But like you mentioned, for some people it's imperative and can definitly be a live saver.

Anyways, again thank you very much, I'm honored that I have helped you and others..

Have a great Memorial Day, and remember those in the service today and of past.

Best,
John

sweetblood22

Laurie
Thank you for your very kind words. I am sorry to hear about your friends. I am very glad when the superthread has been helpful to someone. I had the idea in my head for one for a long time and I had so many links book marked from all my research from before I found this site, even. Then when I saw John making his links, I realized that would be the perfect way for me to do what I had wanted to for a long time. John giving me the way to do the links allowed me to make the thread.

Of course you have my permission to do something like that. If you like you can even give me some links that you want and I will do some for you if you like. I am not qualified to do the research for CRC. I don't really know what's relevant and helpful since I've not experienced with it. Or, I can send you what John sent me, and you can do as I do and use his template to plug your own sites in. It's not hard, just time consuming.

Sweets.

ellamenno

sweetblood22 said:

Laurie
Thank you for your very kind words. I am sorry to hear about your friends. I am very glad when the superthread has been helpful to someone. I had the idea in my head for one for a long time and I had so many links book marked from all my research from before I found this site, even. Then when I saw John making his links, I realized that would be the perfect way for me to do what I had wanted to for a long time. John giving me the way to do the links allowed me to make the thread.

Of course you have my permission to do something like that. If you like you can even give me some links that you want and I will do some for you if you like. I am not qualified to do the research for CRC. I don't really know what's relevant and helpful since I've not experienced with it. Or, I can send you what John sent me, and you can do as I do and use his template to plug your own sites in. It's not hard, just time consuming.

Sweets.

Thanks Sweets and Skiff
Though I personally have not suffered from HNC or CRC (my ca was Hodgkins) I see the terrible struggles these folks are having, some are long-timers, some newbies and some in the middle. Goodness knows how many lurkers are out there as well and deriving benefits from your Superthread. I will go over to the CRC and see if anyone is better versed than I am at the tech side of things. Thanks so much to both of you to offer up what you can. I may come to you for advice such as how have you managed to keep people from posting directly to the thread? The template John sent you would be most helpful,thanks. I will pm you both my e-mail address.
Who knows, with enough people's experiences we may be able to one day cure our own cancers or at the very least make the Beast less nasty to deal with! Onward!

Good Job Friends!

Love and Peace,

Laurie

Skiffin16

ellamenno said:

Thanks Sweets and Skiff
Though I personally have not suffered from HNC or CRC (my ca was Hodgkins) I see the terrible struggles these folks are having, some are long-timers, some newbies and some in the middle. Goodness knows how many lurkers are out there as well and deriving benefits from your Superthread. I will go over to the CRC and see if anyone is better versed than I am at the tech side of things. Thanks so much to both of you to offer up what you can. I may come to you for advice such as how have you managed to keep people from posting directly to the thread? The template John sent you would be most helpful,thanks. I will pm you both my e-mail address.
Who knows, with enough people's experiences we may be able to one day cure our own cancers or at the very least make the Beast less nasty to deal with! Onward!

Good Job Friends!

Love and Peace,

Laurie

LOL...No Posting on the Superthread...
Dawn leads by intimidation, that's why nobody posts on her superthread....

LOL, just teasing, I think it's been a work in progress. By now everyone pretty much understands, "No Posting on the Superhtread"...

In the early days of the superthread, people would post and add or thank Dawn, and she'd have to start over and delete their comments explaining it wasn't personal, she just wanted to keep the thread clean.

She will hit it occasionally to bump it back up on the topic list so it doesn't get buried.

It would be nice if someone from CSN would make it a sticky so it would stay in front all of the time....

Maybe I'll see if I can find the name of the one that posts on here occasionally when there is an issue.

Best,
John

sweetblood22

Skiffin16 said:

LOL...No Posting on the Superthread...
Dawn leads by intimidation, that's why nobody posts on her superthread....

LOL, just teasing, I think it's been a work in progress. By now everyone pretty much understands, "No Posting on the Superhtread"...

In the early days of the superthread, people would post and add or thank Dawn, and she'd have to start over and delete their comments explaining it wasn't personal, she just wanted to keep the thread clean.

She will hit it occasionally to bump it back up on the topic list so it doesn't get buried.

It would be nice if someone from CSN would make it a sticky so it would stay in front all of the time....

Maybe I'll see if I can find the name of the one that posts on here occasionally when there is an issue.

Best,
John

Lol John! Who me???
Lol John! Who me??? Intimidating???! Laurie , I rigged it up so if you post to it, you get an electric shock. Just kidding. I have been known to delete it and keep it free of posts. I just want it to be information only and free of chatter. I don't want people to sift through anything extraneous, just want it to be info and links. As John said, it's nothing personal, that's just my vision of how it ought to be. So it's been known to disappear and then reappear.

It would be nice if I could pin it there, but I would want to get rid of any extraneous posts if there were any that ended up there.