› Forums › General Melanoma Community › How u b – Jeremy, Julie, and JAAAAANNNNNNER???!!!!
- This topic has 14 replies, 7 voices, and was last updated 5 years, 1 month ago by
ed williams.
- Post
- Replies
-
-
- February 20, 2019 at 2:14 pm
Not quite sure what you mean by "JAAANNNNNNER!!!!!!!!!!!!!!!!" but I'll second that! Ditto on the other sentiments as well.
Brian
-
- February 20, 2019 at 2:53 pm
Hey Brian,
Janner was treated incredibly rudely by a one-time poster, who has yet to apologize, on this forum. Janner's hurt (and outrage) was apparent in her response and since then we have not been allowed access to her warmth, humor, and generous expertise. She has given more to folks in this community than was ever required of her. She is more than deserving of a break. If she is gone, so be it. But, those who would criticize with no research into the background of a response would be well advised to heed my granny's admonition: If you can't say something nice, don't say anything at all!
In this case, (https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/question-about-pathology-3) Janner had been giving patient advice to one member FOR MONTHS!!!!!!!!!!! So – if we have lost Janner ~
1. That is a HUGE and perhaps irreplaceable loss.
2. LEARN from this people!!!! Your little quick typing, misspelled, hidden behind a computer screen, tongue lashings can cause harm. Real harm to real people. And YOU may be the one who suffers the most when they leave your happy A$$ in the lurch! Seriously!!!!
3. Given that all of us on this forum have melanoma, have a loved one with melanoma, or fear we have melanoma – don't we have bigger concerns? Haven't we learned ANYTHING about what is important?
4. Now before I get bashed up side the head….YES! I will contradict ANY post that potentially misleads a melanoma newbie about what will and won't cure, prevent, or treat melanoma!!!!!!!! Absolutely!!! Folks can then choose between the data I provide and the cure du jour the poster is promoting. At that point, both sides are presented and it is up to the reader to choose. And…YES!!! I am fiercely loyal to those who have been in the trenches with me for years. Some folks make me….. Oh, law!!! My dear sweet wise Granny is rolling in her grave! I need to stop!
Just keep'n it a hundred. Hope you are well, Brian!!! Wishing you all a lovely day in melanoma land and beyond! celeste
Really – JAAAANNNNNNNNER!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! We love you.
-
- February 20, 2019 at 2:32 pm
Aww friends, thanks for asking.
I am no longer a red hot mess! The ulcer on my arm is gone (yea that was nasty!) and now has just left a hard scar like chunk in my arm.
Last week I saw the Rock Star and we talked about future treatments. The plan is to watch and wait to see what happens to the mel mets in my arm. RS Doc thinks I've had enough of an immune response that it should take care of them if it's going to work. So we watch and wait and see what happens.
It's probably not been long enough to see any results yet, but the mel mets are still there alive and kicking. Of course if these suckers don't melt away I can have them cut out. It's good to have options!
Thanks for asking! And I second the call for Janner.
Shalom!
Julie
-
- February 20, 2019 at 3:00 pm
Hey Julie! You have endured so much crazy and handle it all with such grace!!! I just love you!! Hope those nasty little spots get gone soon! But, you're exactly right in that you can get rid of them with surgery if need be. Anyhow, so glad you are better from the reaction. Keep us posted. I think of you often. celeste
-
- February 20, 2019 at 9:40 pm
Hi there Celeste, I thought you might like this MD Anderson study on brain mets, and link to prior radiation and then immunotherapy working better, plus some new ideas about blood supply!!!! https://www.mdanderson.org/newsroom/study-finds-melanoma-brain-metastases-are-immunosuppressive-with.h00-159300678.html?fbclid=IwAR3zWaOLNleZIMAnvRL83jZYdapNMWut8Z0iZgl9ktqwX3mhURbmwSTG2Lc
-
- February 25, 2019 at 3:50 pm
As background, I have been stage 1A for seven years and follow this forum regularly but rarely post. I've just come back from a month away and have been upset to read the personal attack on a fellow melanoma sufferer, and stage 4 at that, who has made the following first time comment:
"Janet must you me that harsh? This is a patient who should be asking questions they don’t understand not to mention you don’t know what type of person they are and how they react..I think it’s a good thing to ask everything and anything..and we should be supportive and not harsh and not cryptic..just my observations"
Whilst personally fully appreciating all of Janner's assistance and advice to early stage sufferers over the years, she can be rather curt in her tone and this is what the responder appears to have focussed on. Yes, she made a mistake in Janner's name and, yes, she could have thought to read back over Janner's numerous previous posts to gain a history and more rounded opinion. But does her comment really merit the bullying nature of follow up replies such as:
"I love it when after being a member on this forum for 8 years this lady decided to make her first post an attack on you "Janner" the person that helps people the most on MRF. I have lost my patients for ass $&@&$ like this first time poster, I think she should crawl back into her hole and just keep watching and not talking."I don't know where you find the patients to be so kind and understanding with so many obvious folks that suffer with mental health issues!!!"
"but since some numb nut pissed her off"
I can't imagine how this woman must now feel, I'm not surprised that she hasn't replied to apologise as she probably fears further comment. What is wrong with being a first time poster after 8 years? At least she's posted a full profile of herself! On a forum such as this, everyone should be entitled to express their opinion without fear of such vehement retaliation.
And as a final thought, how nice is this comment:
"I don't know where you find the patients (sic) to be so kind and understanding with so many obvious folks that suffer with mental health issues!!!".
So suffering from anxiety after any early melanoma diagnosis or potential one (and all that entails, such as over reaction and constant dwelling on what-ifs, is now a mental health issue!! What a really feel good comment that is….
-
- March 5, 2019 at 5:22 pm
Hey Becky!! So good to hear from you again! It's been awhile. (Was this post written too rapidly on a train as was your last?) Anyhow, since Janner appears to have left us after more than 2 decades of dedicated service in the care of the Stage I/II and newly diagnosed melanoma suffers here…maybe you can fill her shoes????!!!! That would be great!!! Yours, celeste
-
- March 13, 2019 at 12:11 pm
Well Becky, since your comment above – no less than 35 additional posts have been put up by peeps newly diagnosed with, or fearing lesions they have, are melanoma. No Janner. No helpful responses from folks so quick to berate her (a dedicated soul who gave her time, energy and expertise to those folks for YEARS!!!) either. Hmmmm…. I wonder, why???? Why would someone pop up out of obscure hibernation to berate another? Why would such an individual not help if they have the inside track on how to do the job she has done for so long ever so much better? Just questions my little brain can't seem to answer. If you have any insights, I'd love to see them. Hope you are having a great, carefree day!!! Yours, celeste
-
- March 22, 2019 at 10:05 am
Celeste, read my initial post again very carefully. I did not "berate" Janner in any way, the focus of my post was the bullying nature of remarks made to a stage 4 melanoma patient who unfourtunately got Janner's name wrong and clearly was unaware of Janner's great assistance to members of the forum.
I find it remarkable that instead of choosing to condemn comments made to this member, such as
"ass $&@&$"
"should crawl back into her hole"
"some numb nut"
for some unfathomable reason you choose instead to personally attack me. You do not know me, you have no idea of my personal circumstances.
Every member should have the right to post, providing that post does not infringe on the forum guidelines. There should be no problem with someone posting anonomously, posting for the first time after being a member for a few years, and choosing not to post replies to topics.
-
- March 22, 2019 at 11:43 am
Well hello again, Becky!!! I think you should read MY "post again very carefully". I never said YOU were the one to berate Janner. Neither, have I attacked you. (Though I could point out that YOU have attacked ME in the past!!! But, that's okay!) I have never said that someone has no right to post anonymously. I have not decreed an appropriate posting time frame nor with what regularity. I am merely seeking help for Stage I/II peeps on the forum and possible insight into why someone WOULD berate an incredibly helpful forum member without a little thought behind it. I suppose you have given your insight. FYI – Ed (and I) are Stage IV patients as well, since that seems to carry weight with you. That writing rapidly (on a train or otherwise) can come back to bite you, can't it? Have a great day! Celeste
-
- March 23, 2019 at 12:46 am
That doesn't solve the problem you create by lasting out at Janner after all the work and guideance she has given on the forum for many years, who is going to help new members now? Nice work by the way!!!
-
- You must be logged in to reply to this topic.