Yep, another person is/has or is thinking of leaving this forum...
Comments
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I dont get whatannalexandria said:I thought John was saying,
that if it was not information that came from the type of studies you mention, that it should at least be based upon one's personal experience. This would be as opposed to saying "a friend's cousin" or what have you. I could be wrong, but that's how I took what he said. AA
John's saying except it seems he wants to stifle debate and information unless it conforms to some 'rule' of his, it's quite clear what we can discuss here, it's in the TOS we don't need anything more.
It's also mentions how to behave towards other members.
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What John is sayingmanwithnoname said:Let me be clear John
Your saying no treatment should be posted here unless it's worked for them personally?, but if we know someone who's treatment worked that is allowed ...(just)
anecdotal evidence is fine, but peer reviewed puplications with double blind randomized trials can't be disscussed because...it hasn't worked for anyone here personally?
Well that's really nice of you.
From my prospective is that chemo can do sometimes more harm than good. For instance my latest two chemo's are killing my liver, not a good thing and perhaps some good old Chinese medicine would have given me a longer time upon this earth then the chemo's that shortened it. Please note the chemo's also lengthened it by three years, so I'm still pro chemo for a longer life with colon cancer, just be more watchful as to your test results, when they start going bad, that's the time to question it.
And I believe he is also pointing out that when someone come on and says my green, pink or even purple juice works, or scorpion venom or pee or eat your cat's coughed up hairballs and you'll be on the way to a cure, are going to get poo pahed by quite a few of us.
Funny thing that, there are tons of bogus cures out there, and some people really believe the advertisements, or are so desperate that they will try them. The old timers, (I've only been here three years) tend to help by pointing these things out, especially when someone new comes on and believes the pusher of the hairball cure.
That's how it comes across to me.
Winter Marie
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Grabbing at straws…manwithnoname said:Let me be clear John
Your saying no treatment should be posted here unless it's worked for them personally?, but if we know someone who's treatment worked that is allowed ...(just)
anecdotal evidence is fine, but peer reviewed puplications with double blind randomized trials can't be disscussed because...it hasn't worked for anyone here personally?
Well that's really nice of you.
Re:
“…anecdotal evidence is fine, but peer reviewed puplications with double blind randomized trials can't be discussed….”
Let’s set it straight and go from there….. No-one said anything can’t be discussed here. The issue is regarding those that promote things that have not provided any historical proof of it working. The word to pay attention to is “promote”, and there’s been an awful lot of the promotion of expensive therapies that do little, if anything to extend one’s life. This forum was never like this before; it seems to have degraded lately, for whatever reason.
The “peer reviewed” comment can not be taken seriously. A “peer group” would be fellow members of the same industry. I’m fairly certain that the “peer group” will make very objective reviews, ehh? Sure they will.
And “double-blind randomized trials”? Of what? “Apricot seed extract”? “Scorpion venom”? “Grape seed extract”? “Coffee enemas”? (Maybe change the name to StarButt's?)
We had two individuals that stuck around on CSN long enough to tell about how they did nothing more than drink the juice of natural plants and fruits, and managed to prove their prognosis wrong. Did it kill cancer? Probably not, but it apparently kept their immune system strong enough to do that job in the manner it normally does for the majority of people.
If they did chemotherapy the entire time, their existence would be attributed to the chemo. But for their juicing efforts? It’s said to be nothing more than luck… I find the hypocrisy blinding.
I am just one among many, that used medicinal strength herbs to actually kill cancer cells. My last surgeon found remnants of dead cancer cells and the damage from what was once cancer that had riddled my small intestine. I suppose they just up and died all by themselves? Perhaps, but it amazed my physicians, and they have no other explanation for the occurrence. “Keep doing what you were doing”, was their collective comment.
It bothers me, that so much time and money is being spent on items that have no merit, while people that are alive thanks to inexpensive resolves get ignored or harassed.
I suppose that’s my pet peeve; wishing I could get people to listen to those that have had something actually work for them, instead of listening to wishful thinkers….
Life’s too short already, why waste it fighting? Is it really only all about “my way is better than your way”?
If so, tell me about -your way- that worked…. And I’ll listen with more objectivity.
Try to be healthy, I can only wish for you to be healthy; I can't make it happen.
John
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Well I don'therdizziness said:What John is saying
From my prospective is that chemo can do sometimes more harm than good. For instance my latest two chemo's are killing my liver, not a good thing and perhaps some good old Chinese medicine would have given me a longer time upon this earth then the chemo's that shortened it. Please note the chemo's also lengthened it by three years, so I'm still pro chemo for a longer life with colon cancer, just be more watchful as to your test results, when they start going bad, that's the time to question it.
And I believe he is also pointing out that when someone come on and says my green, pink or even purple juice works, or scorpion venom or pee or eat your cat's coughed up hairballs and you'll be on the way to a cure, are going to get poo pahed by quite a few of us.
Funny thing that, there are tons of bogus cures out there, and some people really believe the advertisements, or are so desperate that they will try them. The old timers, (I've only been here three years) tend to help by pointing these things out, especially when someone new comes on and believes the pusher of the hairball cure.
That's how it comes across to me.
Winter Marie
believe anyone has the right to 'police' the board about whats effective or not, you hear 'scorpion venom' and immediatley dismiss it without checking to see what the status of scorpion venom is , in fact there is quite a bit of research about it. No one is saying 'here try scorpion venom it cured me of stage IV cancer and buy it HERE'
If I saw a post like that I would flag it, how naive do you think people are that they need someone else to tell them?
And when it comes to low cost or free methods like diet or herbs with some kind of evidence behind them who are you or anyone to say it wont work on them, even taking away someones last hope!
Scorpion venom must have helped ONE person at least before they ended up distributing it.
And you keep mentioning 'cure' I have yet to see ONE post about anything alternative or conventional where someone has used that word for a treatment they are talking about or reading about.
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grabbing at straws?John23 said:Grabbing at straws…
Re:
“…anecdotal evidence is fine, but peer reviewed puplications with double blind randomized trials can't be discussed….”
Let’s set it straight and go from there….. No-one said anything can’t be discussed here. The issue is regarding those that promote things that have not provided any historical proof of it working. The word to pay attention to is “promote”, and there’s been an awful lot of the promotion of expensive therapies that do little, if anything to extend one’s life. This forum was never like this before; it seems to have degraded lately, for whatever reason.
The “peer reviewed” comment can not be taken seriously. A “peer group” would be fellow members of the same industry. I’m fairly certain that the “peer group” will make very objective reviews, ehh? Sure they will.
And “double-blind randomized trials”? Of what? “Apricot seed extract”? “Scorpion venom”? “Grape seed extract”? “Coffee enemas”? (Maybe change the name to StarButt's?)
We had two individuals that stuck around on CSN long enough to tell about how they did nothing more than drink the juice of natural plants and fruits, and managed to prove their prognosis wrong. Did it kill cancer? Probably not, but it apparently kept their immune system strong enough to do that job in the manner it normally does for the majority of people.
If they did chemotherapy the entire time, their existence would be attributed to the chemo. But for their juicing efforts? It’s said to be nothing more than luck… I find the hypocrisy blinding.
I am just one among many, that used medicinal strength herbs to actually kill cancer cells. My last surgeon found remnants of dead cancer cells and the damage from what was once cancer that had riddled my small intestine. I suppose they just up and died all by themselves? Perhaps, but it amazed my physicians, and they have no other explanation for the occurrence. “Keep doing what you were doing”, was their collective comment.
It bothers me, that so much time and money is being spent on items that have no merit, while people that are alive thanks to inexpensive resolves get ignored or harassed.
I suppose that’s my pet peeve; wishing I could get people to listen to those that have had something actually work for them, instead of listening to wishful thinkers….
Life’s too short already, why waste it fighting? Is it really only all about “my way is better than your way”?
If so, tell me about -your way- that worked…. And I’ll listen with more objectivity.
Try to be healthy, I can only wish for you to be healthy; I can't make it happen.
John
"The issue is regarding those that promote things that have not provided any historical proof of it working."
Apart from you John is there another member on CSN that has been 'cured' by TCM?
"The “peer reviewed” comment can not be taken seriously" are you serious???
"there’s been an awful lot of the promotion of expensive therapies that do little, if anything to extend one’s life"....which one's exactly.
"And “double-blind randomized trials”? Of what? “Apricot seed extract”? “Scorpion venom”? “Grape seed extract”? “Coffee enemas”?
Well lets look at a trial;
"Assessment of the effects of herbal medicines in the treatment of advanced stage colorectal cancers requires more high quality and large sample size of clinical trials to validate it. Until now, we are unable to recommend any kind of Chinese herbal medicines for the routine treatment in advanced stage colorectal cancers before finding more reliable and sufficient evidence."
http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD004653.pub2/abstract
Seems maybe you could add TCM to your list.
It's great it worked for you but not even the China Academy of Traditional Chinese Medicine will recommed it.
PERSONALLY I would say why not try it!
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A lotmanwithnoname said:Well I don't
believe anyone has the right to 'police' the board about whats effective or not, you hear 'scorpion venom' and immediatley dismiss it without checking to see what the status of scorpion venom is , in fact there is quite a bit of research about it. No one is saying 'here try scorpion venom it cured me of stage IV cancer and buy it HERE'
If I saw a post like that I would flag it, how naive do you think people are that they need someone else to tell them?
And when it comes to low cost or free methods like diet or herbs with some kind of evidence behind them who are you or anyone to say it wont work on them, even taking away someones last hope!
Scorpion venom must have helped ONE person at least before they ended up distributing it.
And you keep mentioning 'cure' I have yet to see ONE post about anything alternative or conventional where someone has used that word for a treatment they are talking about or reading about.
When people are desperate there is a lot of naivety, a lot. We've seen a lot of that.
When diagnosed with colon cancer believe me, I was very, very naive about it, thanks to the good people here I have a lot more knowledge, for which I am eternally grateful.
So when you ask if people are really naive, yes we are, it's all new ground to us, everyone of us with colorectal cancer.
Do you really think that everything being touted as helpful or a cure by people selling the producare have helped someone, or perhaps their just out to make a buck off of naive people? If so, I've got some cat hair balls for sale.
Winter Marie
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Out of curiosity, have any of you looked at any "research"manwithnoname said:grabbing at straws?
"The issue is regarding those that promote things that have not provided any historical proof of it working."
Apart from you John is there another member on CSN that has been 'cured' by TCM?
"The “peer reviewed” comment can not be taken seriously" are you serious???
"there’s been an awful lot of the promotion of expensive therapies that do little, if anything to extend one’s life"....which one's exactly.
"And “double-blind randomized trials”? Of what? “Apricot seed extract”? “Scorpion venom”? “Grape seed extract”? “Coffee enemas”?
Well lets look at a trial;
"Assessment of the effects of herbal medicines in the treatment of advanced stage colorectal cancers requires more high quality and large sample size of clinical trials to validate it. Until now, we are unable to recommend any kind of Chinese herbal medicines for the routine treatment in advanced stage colorectal cancers before finding more reliable and sufficient evidence."
http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD004653.pub2/abstract
Seems maybe you could add TCM to your list.
It's great it worked for you but not even the China Academy of Traditional Chinese Medicine will recommed it.
PERSONALLY I would say why not try it!
on grape seed extract and colon cancer? I'm not saying its effective or not i only cite stuff i've read that sounds promising or potentially helpful. As anybody can read, i'll stop wasting my time typing stuff that's deemed worthless........
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Ummm lets seewawaju04976 said:Well, Tina, I would think if
Well, Tina, I would think if my post was gonna be flagged, then there certainly should have been some flagging a few days ago. But I'm not going there, people saw her in action. If you wish to keep this going, then keep commenting. I said my piece, yes I am new here, but it doesn't take long to figure out who "runs" this. No, I will not pm this person; I have heard from people who do, and she's just as bullyish. I hope she's the flagger. Perhaps she'll think before posting. Enough...And yep, me too, Dixon, I'm a newby. That was what I saw, and many others say, the other day ("gotta be right"). I too want to see the different possibilities out there, and I hope people still put the alternatives out there. And they should do so without being attacked.
Judy
I log on on 3/18, I see a discussion started on 3/18, I respond to it on 3/18, I just can't figure out how I should have responded a few days earlier.....
Tina
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Tinageotina said:Ummm lets see
I log on on 3/18, I see a discussion started on 3/18, I respond to it on 3/18, I just can't figure out how I should have responded a few days earlier.....
Tina
Judy's starting post on this thread was on the following thread first: http://csn.cancer.org/node/256001
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Please continue to post infocoloCan said:Out of curiosity, have any of you looked at any "research"
on grape seed extract and colon cancer? I'm not saying its effective or not i only cite stuff i've read that sounds promising or potentially helpful. As anybody can read, i'll stop wasting my time typing stuff that's deemed worthless........
Please continue to post info colocan....I don't always respond and don't read all of the posts, but I appreciate the time everyone takes to find things of interest and use the search function all the time - so even if I'm not interested in reading about grape seed extract today, I may well be looking for more info about it tomorrow! I really appreciate the ability to learn and read about things that I may not find in searching the internet on my own.
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Let's see, the doctor tellsmanwithnoname said:grabbing at straws?
"The issue is regarding those that promote things that have not provided any historical proof of it working."
Apart from you John is there another member on CSN that has been 'cured' by TCM?
"The “peer reviewed” comment can not be taken seriously" are you serious???
"there’s been an awful lot of the promotion of expensive therapies that do little, if anything to extend one’s life"....which one's exactly.
"And “double-blind randomized trials”? Of what? “Apricot seed extract”? “Scorpion venom”? “Grape seed extract”? “Coffee enemas”?
Well lets look at a trial;
"Assessment of the effects of herbal medicines in the treatment of advanced stage colorectal cancers requires more high quality and large sample size of clinical trials to validate it. Until now, we are unable to recommend any kind of Chinese herbal medicines for the routine treatment in advanced stage colorectal cancers before finding more reliable and sufficient evidence."
http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD004653.pub2/abstract
Seems maybe you could add TCM to your list.
It's great it worked for you but not even the China Academy of Traditional Chinese Medicine will recommed it.
PERSONALLY I would say why not try it!
Let's see, the doctor tells you you have stage 4 cc, spread to your liver. You ask if there is a cure. The doctor says no, you have a few months to maybe a couple of years, with standard treatment. Basically, you have a doctor telling you you have at the most a couple of years. My fiance was told 1.5 years at the most with chemo. He looked for an alternative and found one. We both use it. I am not promoting it. But I also should not be put down, nor anyone else be put down, for trying alternatives if they wish. It is working for both of us (we both feel better than we have in years; my fiance only feels sick when he increases one pill up from the half dose chemo pills he taking now in the a.m. and p.m.; he then goes back to half dose and he is fine). I have stated on my profile that my fiance didn't know, personally, a couple of people where he works that this worked on, I would not use it myself. I agree with manwithnoname, especially when your doctor tells you there is no cure, u are terminal, u have x amount of months left. We both have the same oncologist who just cannot believe how well we are both doing. He is especially amazed that I have tolerated the chemo tx so well. I will have my 8th folfox Friday, take the pump home over the weekend. I have had minimal side-effects, thank God. I am back at school, full of more energy than I had before I got this dx in November. My liver has shrunk to the point I now have to lift my head up so he can feel it. I will have my colostomy reversed in June. The surgeon who told me I had two years was shocked when I walked into his office last Thursday to discuss the reversal. Our oncologist says, "Keep doing what you are doing;" he knows about the alternative. I'm not going to to on about drug companies and such. I guess I don't understand why they do trials and such with the chemicals, but they won't do trials with the alternative stuff that is out there. That's a debate I don't want to get into, but if people are told, "This is going to kill you in 3 months" I think I'd be checking into some other things.
Judy
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Scorpion Venomherdizziness said:What John is saying
From my prospective is that chemo can do sometimes more harm than good. For instance my latest two chemo's are killing my liver, not a good thing and perhaps some good old Chinese medicine would have given me a longer time upon this earth then the chemo's that shortened it. Please note the chemo's also lengthened it by three years, so I'm still pro chemo for a longer life with colon cancer, just be more watchful as to your test results, when they start going bad, that's the time to question it.
And I believe he is also pointing out that when someone come on and says my green, pink or even purple juice works, or scorpion venom or pee or eat your cat's coughed up hairballs and you'll be on the way to a cure, are going to get poo pahed by quite a few of us.
Funny thing that, there are tons of bogus cures out there, and some people really believe the advertisements, or are so desperate that they will try them. The old timers, (I've only been here three years) tend to help by pointing these things out, especially when someone new comes on and believes the pusher of the hairball cure.
That's how it comes across to me.
Winter Marie
The scorpion venom was my post and you flamed me for it. So i don't usually post my research here anymore, which is probably a shame as not sure how many others can provide a perspective from a biochemist's point of view.
I did not promote it, just shared my experience and mentioned that it did not appear to work for me, but having a MDR mutation, not even chemo works for me, so that means little. Before you flame someone else's alternative posts, may be good to look at the research on I dono, chlorotoxins contained in many insect venoms including scorpions for example. Your post on my contributions to csn was just plain nasty. You also accused me of being too comfortable with everyone here and changing my username??? Well, you need not be concerned. I am not very comfortable here now.0 -
What in the worldrenw said:Scorpion Venom
The scorpion venom was my post and you flamed me for it. So i don't usually post my research here anymore, which is probably a shame as not sure how many others can provide a perspective from a biochemist's point of view.
I did not promote it, just shared my experience and mentioned that it did not appear to work for me, but having a MDR mutation, not even chemo works for me, so that means little. Before you flame someone else's alternative posts, may be good to look at the research on I dono, chlorotoxins contained in many insect venoms including scorpions for example. Your post on my contributions to csn was just plain nasty. You also accused me of being too comfortable with everyone here and changing my username??? Well, you need not be concerned. I am not very comfortable here now.Are you talking about? Channing user name and being too comfortable here? Please do find this supposed post I which I stated that dear. My goodness.
and saying scropian venom isn't going to work is hardly "flaming".
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Judywawaju04976 said:Well, Tina, I would think if
Well, Tina, I would think if my post was gonna be flagged, then there certainly should have been some flagging a few days ago. But I'm not going there, people saw her in action. If you wish to keep this going, then keep commenting. I said my piece, yes I am new here, but it doesn't take long to figure out who "runs" this. No, I will not pm this person; I have heard from people who do, and she's just as bullyish. I hope she's the flagger. Perhaps she'll think before posting. Enough...And yep, me too, Dixon, I'm a newby. That was what I saw, and many others say, the other day ("gotta be right"). I too want to see the different possibilities out there, and I hope people still put the alternatives out there. And they should do so without being attacked.
Judy
Since I only PM those that I have a close relationship with, I can tell you that your statement about bully PM's are in fact a lie.
I was ignoring your post (someone PMed me and told me about your vicious mean spirited post and said you were referring to me) until this out outright lie was posted.
the only PM that ever went to someone I disagreed with was to manwithnoname and ONLY because he PMed me asking me why I hated him. My response was "why would you think I hate you? Hate infers I care about you, and since I do not, I cannot hate you". That has been the extent of any PM with anyone I never agreed with. There has been none other, ever. Please do not post lies, and if you want to say "others" told you that, why not ask them for those PMs?
Winter Marie
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I Remember...z said:Phil
Does this remind you of the post where the same topic gets argued about and then fades away just to come back again and start all over? I remember you posting that reference before maybe 1 year ago. I'll try to find it.
Lori
That hit the nail on the head didn't it...
I have seen this stuff play out countless times and usually it runs that course. This time it seems to have taken on a life of it's own. Unless you're an insomniac Lori I wouldn't waste much time with trying to find it.
There seems to be stronger personalities here now that are like pit bulls (no offense to pit bulls) and won't loosen their grip!
The choice of the debate is amusing (to me) because it's like fighting over how many angels can dance on the head of a pin. Obviously it depends on the type of dance the angels are doing and whether the pin is head up or head down. Jeesh! Now into it's third week it's still going strong. It's harder to kill than cancer is it seems!
You got me Jen2012, I'm busted!!! Yes, I asked that people just do whatever they're going to do without fanfare and to keep conversations that probably are better off in private, private. It's like announcing to everyone that they have to take a dump. Just take the dump! Don't call a press conference for
Pete's sakecrying out loud... Arguing over something that has no one answer, if there's even any answer at all, seems pointless to me. But that's me. Some people make a living doing that!:-)
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Phillieg,PhillieG said:Let's go for Three weeks of this nonsense
This has got legs as the saying goes... I can't believe how much the proverbial Dead Horse is being beaten in this forum about this topic.
If someone wants to leave, then leave.
If someone has a bone to pick on another member, please do it through PM's.
Winter doesn't do
Phillieg,
Winter doesn't do PM's unless she likes you, or hates you......I'm not sure which one, I am so confused. (SEE BELOW SOMEWHERE)
If cancer weren't so da*n horrible, this would be funnier than "Whose on First".0 -
"Also your blogs start inherdizziness said:What in the world
Are you talking about? Channing user name and being too comfortable here? Please do find this supposed post I which I stated that dear. My goodness.
and saying scropian venom isn't going to work is hardly "flaming".
"Also your blogs start in January and you seem quite comfortable with us, as LivinginNH wondered, who are you? I think as others do, that you are one who is familiar with us and have posted under another name before, I must say I don't trust much of what you post."
Your words exactly.
Also you did more than just say "scorpion venom isn't going to work". btw how do you know this? Is it some clinical research you did that I am not aware off, or just your own unfounded opinion?0 -
Janiejanie1 said:Phillieg,
Winter doesn't do
Phillieg,
Winter doesn't do PM's unless she likes you, or hates you......I'm not sure which one, I am so confused. (SEE BELOW SOMEWHERE)
If cancer weren't so da*n horrible, this would be funnier than "Whose on First".As I stated , I don't PM anyone that I a disagree with, why aggravate them? If you wish to PM me I would respond as I did with manwithnoname. If one wants to make the effort toPM me, I would respond, but none that I've ever disagreed with has, with the exception of manwithnoname, who received a response.
Also quit the lies please, you just lied saying I hate people, I can't name one person I hate. Hate is a strong word and emotion, not one I have room for in my life. And never on this board have I ever said "I hate ________."(insert anyones name). Never happened. I do hate cancer though!
Winter Marie
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Yeprenw said:"Also your blogs start in
"Also your blogs start in January and you seem quite comfortable with us, as LivinginNH wondered, who are you? I think as others do, that you are one who is familiar with us and have posted under another name before, I must say I don't trust much of what you post."
Your words exactly.
Also you did more than just say "scorpion venom isn't going to work". btw how do you know this? Is it some clinical research you did that I am not aware off, or just your own unfounded opinion?Got to say I do say them as I think them. Chemo... Glad you can search my 2914 posts to find it, (sorry just had to throw that in, since MWNN and I think it was Judy or Janie accused me of searching for hours for posts, as you can see, just put something in the search engine and it's easy to find) (I know you didn't go through 2914 posts to find it, it's pretty easy to look things up isn't it?) so I would have to eat my words and now I remember (sorry chemo truly does affect memory)
I do remember now many of us thinking about your timing and name and wondering who you were, if you were familiar to us from before and decided to ask you about it. I'm not shy that way.
Winter Marie
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actually it wasn't easy toherdizziness said:Yep
Got to say I do say them as I think them. Chemo... Glad you can search my 2914 posts to find it, (sorry just had to throw that in, since MWNN and I think it was Judy or Janie accused me of searching for hours for posts, as you can see, just put something in the search engine and it's easy to find) (I know you didn't go through 2914 posts to find it, it's pretty easy to look things up isn't it?) so I would have to eat my words and now I remember (sorry chemo truly does affect memory)
I do remember now many of us thinking about your timing and name and wondering who you were, if you were familiar to us from before and decided to ask you about it. I'm not shy that way.
Winter Marie
actually it wasn't easy to find as the site search seems broken. only reason i found it was because it was relatively recent and I remembered the post title. still had to go 5 pages back in history.0
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