› Forums › General Melanoma Community › How about a devoted, highlighted section for success stories on this site?
- This topic has 86 replies, 17 voices, and was last updated 13 years, 2 months ago by
JakeinNY.
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- February 6, 2011 at 5:41 pm
We all know that there are thousands (maybe millions) of success stories all over the world. Since this site seems to be the largest for melanoma, why not have a section that patients can browse through to give more hope and inspiration. Am I missing something here? If it doesn't exist yet, then we should all demand that it be created.
We all know that there are thousands (maybe millions) of success stories all over the world. Since this site seems to be the largest for melanoma, why not have a section that patients can browse through to give more hope and inspiration. Am I missing something here? If it doesn't exist yet, then we should all demand that it be created.
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- February 7, 2011 at 12:54 am
Yes, broken down into stages, making it even easier to access…it can even be broken down further from there. We must all request this from the folks that run this site.
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- February 7, 2011 at 1:59 pm
Great idea!
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- February 7, 2011 at 1:59 pm
Great idea!
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- February 7, 2011 at 6:41 pm
There are hundreds if not thousands of success stories right under your noses. Some as thead topics and some as post responses.
Heres a good one to go back to review "The Stage IV Roll Call for the undead"
http://www.melanoma.org/community/mpip/stage-ivroll-call-undead-please
Inspiration abounds thoughout this forum all you have to do is look for it. It's all there in real life stories. The inspiration and success is also tinged with hardship, pain and sorrow.
Jerry from Cape Cod
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- February 7, 2011 at 6:41 pm
There are hundreds if not thousands of success stories right under your noses. Some as thead topics and some as post responses.
Heres a good one to go back to review "The Stage IV Roll Call for the undead"
http://www.melanoma.org/community/mpip/stage-ivroll-call-undead-please
Inspiration abounds thoughout this forum all you have to do is look for it. It's all there in real life stories. The inspiration and success is also tinged with hardship, pain and sorrow.
Jerry from Cape Cod
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- February 8, 2011 at 5:23 am
🙂 Ah Jerry… some people will never get it. Some of the most inspiring things I have seen have come from those in the midst of the darkest battles. And no, I don't necessarily mean the ones who won the fight. Those who don't feel comfortable hearing about those things do themselves (and the people involved) a great disservice, IMO.
One (of many) reasons I don't bother often on here, is that quite frankly many people make me feel like I'm walking around already dead. Far as I can tell, I'm still here and doing great- but still being here despite 20+ brain mets is NOT providing hope for people, it's merely making them uncomfortable and scared that that is a prospect they may actually face one day (only, of course) if their brains are as infinitely attractive to mel like mine seem to be 😛 What can I say? I'm a mel-magnet!!
Logically, if no one survived melanoma, there would be no responses to the "can I survive this?" type questions, would there? Just a resounding silence. And this place is far from silent, so work it out people! The HUMAN SPIRIT is what inspires, not a medical procedure with a good result.
By all means, whack it on another board. I still don't have much faith that people will be able to see the trees in that massive forest because their minds are closed.
(Can you tell I'm over it, Jer? :D)
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- February 8, 2011 at 5:23 am
🙂 Ah Jerry… some people will never get it. Some of the most inspiring things I have seen have come from those in the midst of the darkest battles. And no, I don't necessarily mean the ones who won the fight. Those who don't feel comfortable hearing about those things do themselves (and the people involved) a great disservice, IMO.
One (of many) reasons I don't bother often on here, is that quite frankly many people make me feel like I'm walking around already dead. Far as I can tell, I'm still here and doing great- but still being here despite 20+ brain mets is NOT providing hope for people, it's merely making them uncomfortable and scared that that is a prospect they may actually face one day (only, of course) if their brains are as infinitely attractive to mel like mine seem to be 😛 What can I say? I'm a mel-magnet!!
Logically, if no one survived melanoma, there would be no responses to the "can I survive this?" type questions, would there? Just a resounding silence. And this place is far from silent, so work it out people! The HUMAN SPIRIT is what inspires, not a medical procedure with a good result.
By all means, whack it on another board. I still don't have much faith that people will be able to see the trees in that massive forest because their minds are closed.
(Can you tell I'm over it, Jer? :D)
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- February 8, 2011 at 6:23 pm
NIC…. I hope I can say this here "I LOVE YOU"!!!!!.. There, I've said it…. I'm still pedaling my bike around when weather allows. Your name and the "other" jerry's" are among the most prominent so I see you on every ride.
Jerry from Cape Cod
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- February 8, 2011 at 8:18 pm
You just keep on pedalling away, and I'll take all the love you throw at me 🙂 went for a walk yesterday myself- only a couple of km's, but not too shabby 5 days post op (not counting my incessant wandering around the hospital the day after) and I was chuckling my butt off every step of the way, remembering someone writing something about "no aerobic exercise" after brain surgery- given my background, all I could think was that if I was doing anything anaerobically, then I wouldn't be breathing, and that MAY cause problems 😀
All great here- you should see my noggin'. Tis a sight to behold!! Actually, I think I'll email you a pic…
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- February 8, 2011 at 8:18 pm
You just keep on pedalling away, and I'll take all the love you throw at me 🙂 went for a walk yesterday myself- only a couple of km's, but not too shabby 5 days post op (not counting my incessant wandering around the hospital the day after) and I was chuckling my butt off every step of the way, remembering someone writing something about "no aerobic exercise" after brain surgery- given my background, all I could think was that if I was doing anything anaerobically, then I wouldn't be breathing, and that MAY cause problems 😀
All great here- you should see my noggin'. Tis a sight to behold!! Actually, I think I'll email you a pic…
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- February 9, 2011 at 1:23 am
Meh- ya rookie!!
Honestly, I don't want them anymore… it's all getting so tiresome *sigh* I don't want to start having to beat you into place with sizes and surgeries. It would just all get too ugly! Just behave yourself (for a change). Anyway, my skull isn't stable enough to hold a crown and would merely detract from my scars, so I don't want one. *pouts*😀
xxx
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- February 9, 2011 at 1:23 am
Meh- ya rookie!!
Honestly, I don't want them anymore… it's all getting so tiresome *sigh* I don't want to start having to beat you into place with sizes and surgeries. It would just all get too ugly! Just behave yourself (for a change). Anyway, my skull isn't stable enough to hold a crown and would merely detract from my scars, so I don't want one. *pouts*😀
xxx
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- February 8, 2011 at 6:23 pm
NIC…. I hope I can say this here "I LOVE YOU"!!!!!.. There, I've said it…. I'm still pedaling my bike around when weather allows. Your name and the "other" jerry's" are among the most prominent so I see you on every ride.
Jerry from Cape Cod
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- February 8, 2011 at 11:41 pm
NicOZ: I am not Worthy! Your post above is a classic and IS the reason the afflicted, blighted beings such as I come sit by the crashing waves of the weary, weathered, wizened written writhing words of fellow suffers at arms, such as yourself. Company needs both pain and pleasure; milestones and misery. Not so much unlike what life is supposed to be, I suppose, for all Mankind. God will sort out what I don't understand.
Hope ALL is/ are well! Love, Grady & Family.
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- February 8, 2011 at 11:41 pm
NicOZ: I am not Worthy! Your post above is a classic and IS the reason the afflicted, blighted beings such as I come sit by the crashing waves of the weary, weathered, wizened written writhing words of fellow suffers at arms, such as yourself. Company needs both pain and pleasure; milestones and misery. Not so much unlike what life is supposed to be, I suppose, for all Mankind. God will sort out what I don't understand.
Hope ALL is/ are well! Love, Grady & Family.
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- February 8, 2011 at 7:22 am
Jerry, That's the one I was going to refer him to. As NicOz points out some people are distressed by the fact that what may of us consider success stories end in death down the road. I get weird looks when asked how I'm doing and respond 1. "Still breathiing", or 2. "Great for a DEAD man!" Oh wait! the horse is the one that killed me last summer, after mel haas failed to wipe me out for the paast 9 years. I would be willing for it to go away but essentially stable for three years is really a success story to me.
NicOz is a great inspitarion to all of us with her fighting spirit. We all know what our odds are, but odds are for large numbers of people. I am not a group! I'm just me and hope to be for some time yet. (Tell Charley to keep going and that I want to keep following his fighting spirit and example. Love that guy! (And you too.) And Jane as she goes for her 5 year NED scan Wednsday. And who could forget DebbieVA. She doesn't slow down enough for mel to find her again!
There have been manytimes that people have asked for current status of groups. The Low stagess don't hang around here long enough to even respond to that question in most cases. It is great that the few that do hang around to help the scared new low stage people. Reading the profile section gives a representation, but who defines success?.
JerryfromFauq
Misdiagnosed for 3 1/2 years, finally diagnosed in 2006 and stage IV in early 2007. (And still can ride horses in the Rockies!)
The Melanoma is not gone, but neither am I gone.
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- February 8, 2011 at 7:22 am
Jerry, That's the one I was going to refer him to. As NicOz points out some people are distressed by the fact that what may of us consider success stories end in death down the road. I get weird looks when asked how I'm doing and respond 1. "Still breathiing", or 2. "Great for a DEAD man!" Oh wait! the horse is the one that killed me last summer, after mel haas failed to wipe me out for the paast 9 years. I would be willing for it to go away but essentially stable for three years is really a success story to me.
NicOz is a great inspitarion to all of us with her fighting spirit. We all know what our odds are, but odds are for large numbers of people. I am not a group! I'm just me and hope to be for some time yet. (Tell Charley to keep going and that I want to keep following his fighting spirit and example. Love that guy! (And you too.) And Jane as she goes for her 5 year NED scan Wednsday. And who could forget DebbieVA. She doesn't slow down enough for mel to find her again!
There have been manytimes that people have asked for current status of groups. The Low stagess don't hang around here long enough to even respond to that question in most cases. It is great that the few that do hang around to help the scared new low stage people. Reading the profile section gives a representation, but who defines success?.
JerryfromFauq
Misdiagnosed for 3 1/2 years, finally diagnosed in 2006 and stage IV in early 2007. (And still can ride horses in the Rockies!)
The Melanoma is not gone, but neither am I gone.
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- February 8, 2011 at 3:41 am
Dawn: There is no doubt that this disease can be beaten. Approved drugs, trial drugs, alternative treatments have all worked for some people. The numbers are certainly not great but don't tell that to the thousands that have beaten this.
Jerry: I know that there are these posts and reposts but I want to see a devoted section where people can look through and be encouraged. If this does not exist, then it is certainly time that it did!!!
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- February 8, 2011 at 3:41 am
Dawn: There is no doubt that this disease can be beaten. Approved drugs, trial drugs, alternative treatments have all worked for some people. The numbers are certainly not great but don't tell that to the thousands that have beaten this.
Jerry: I know that there are these posts and reposts but I want to see a devoted section where people can look through and be encouraged. If this does not exist, then it is certainly time that it did!!!
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- February 8, 2011 at 6:58 pm
Jake,
I've composed about 4 replies to your post and I've shortened it down to this.
Your statement about "demanding" that the MRF modify the website to satisfy and non defined definition of success struck me as a bit off but I'm sure that it was just a poor choice of words for you because as you know the MRF just spent tens of thousands of dollars to rebuild their site and incorporate the old MPIP in it. (still controversal)
If you still feel that way send Tim from the MRF an email and make the demand.
As anon says below… define success and you'll have a giant headstart on the project.
Jerry from Cape Cod
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- February 8, 2011 at 6:58 pm
Jake,
I've composed about 4 replies to your post and I've shortened it down to this.
Your statement about "demanding" that the MRF modify the website to satisfy and non defined definition of success struck me as a bit off but I'm sure that it was just a poor choice of words for you because as you know the MRF just spent tens of thousands of dollars to rebuild their site and incorporate the old MPIP in it. (still controversal)
If you still feel that way send Tim from the MRF an email and make the demand.
As anon says below… define success and you'll have a giant headstart on the project.
Jerry from Cape Cod
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- February 8, 2011 at 12:16 pm
Dear Jake,
It sounds like you are wanting a section of people's true life accounts of their struggle/fight against the beast aka MELANOMA who "WIN" AKA go into "remission" (a term not used with melanoma for the most part), achieve NED (no evidence of disease) status for quite some time, or just plain "beat it" (not sure how you would define that). Someone on another thread called melanoma a "sneaky sneak"… sometimes coming back after days, months, years of no signs or symptoms. I thought this term quite accurate, as I read about this all the time with people's stories on this board. BUT I want to read those stories, want to hear what happens to people, do not want to ever ever think I have this beast beat and let my guard down. No, I want to get my checkups, have my scans, eat well, rest, work on boosting my immune system, being ever vigilant to any signs or symptoms that the beast is back and then seek out the treatments I need. I NEED everyone's story to help me in my fight against melanoma.
I have HOPE and I get more hope and inspiration from reading everyone's stories; what NicOz wrote above is also true, the HUMAN SPIRIT exists in these posts and people share their hopes and the lengths they will go to fight and keep fighting melanoma. There is success in everyone's story, its there for all to see.
I come to the MPIP board daily and read people's updates, learn new terms, learn about new treatments, cry, laugh, and feel so blessed to have this board, be part of this sharing, whether it is good news or sad news. I for one dont need a separate section of only positive "success" stories.
I wish you continued success in your fight against melanoma.
Vermont_Donna
stage 3a
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- February 8, 2011 at 12:16 pm
Dear Jake,
It sounds like you are wanting a section of people's true life accounts of their struggle/fight against the beast aka MELANOMA who "WIN" AKA go into "remission" (a term not used with melanoma for the most part), achieve NED (no evidence of disease) status for quite some time, or just plain "beat it" (not sure how you would define that). Someone on another thread called melanoma a "sneaky sneak"… sometimes coming back after days, months, years of no signs or symptoms. I thought this term quite accurate, as I read about this all the time with people's stories on this board. BUT I want to read those stories, want to hear what happens to people, do not want to ever ever think I have this beast beat and let my guard down. No, I want to get my checkups, have my scans, eat well, rest, work on boosting my immune system, being ever vigilant to any signs or symptoms that the beast is back and then seek out the treatments I need. I NEED everyone's story to help me in my fight against melanoma.
I have HOPE and I get more hope and inspiration from reading everyone's stories; what NicOz wrote above is also true, the HUMAN SPIRIT exists in these posts and people share their hopes and the lengths they will go to fight and keep fighting melanoma. There is success in everyone's story, its there for all to see.
I come to the MPIP board daily and read people's updates, learn new terms, learn about new treatments, cry, laugh, and feel so blessed to have this board, be part of this sharing, whether it is good news or sad news. I for one dont need a separate section of only positive "success" stories.
I wish you continued success in your fight against melanoma.
Vermont_Donna
stage 3a
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- February 9, 2011 at 2:41 am
Well. I'm definitely surprised by some of the comments.
"Success"?? OK replace it with "inspirational"…I think that the point is clear, no?
I am not suggesting that we replace what we have here. I am just suggesting that we add the section that people can go to and find "inspirational" stories". I would think that it would be especially helpful to those at the beginning of their journey with this disease.
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- February 9, 2011 at 2:41 am
Well. I'm definitely surprised by some of the comments.
"Success"?? OK replace it with "inspirational"…I think that the point is clear, no?
I am not suggesting that we replace what we have here. I am just suggesting that we add the section that people can go to and find "inspirational" stories". I would think that it would be especially helpful to those at the beginning of their journey with this disease.
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- February 9, 2011 at 5:58 am
INSPIRATION – the process of being mentally stimulated to do or feel something
JakeinNY,
It seems you have quite the debate in progress… stimulating. I do know every single person that comes to this sight comes looking for answers. It's why I came in the beginning. The reason why I still come is for INSPIRATION, when I am feeling disturbed and I make a post I receive words of encouragement from others who have gone down the same path as my husband & I. Grateful I am for this site and other like it.
So what is SUCCESS?
After my husband's first surgery last summer, a 10-inch scar with staples in his right leg/groin… his first week home he crawled onto his beloved Harley and went on a hour long ride. Did I know about it? NO! Was that a SUCCESS? Yes… to him. He made it home in one piece, alive to tell about it. Had I been home he wouldn't have gotten away with that to live and tell about it!
In January it was brain surgery… this placed him in stage 4 in just 7 months, 3 weeks to heal then it was on to the Gamma Knife then… back to work in 2 days. So who notices a few words are twisted now and then?
You want INSPIRATION?
You will find it after every surgery and healing a person has that is on this discussion board. If a person is on treatment? Ask them if they are tired, sick, or still working?
I asked my husband what you may be looking for and he thought it might be the "magic bullet". Everybody is looking for it. In the meantime look at your neighbor here and see their everyday life and how they are functioning. That is the INSPIRATION. That is the light in my husband's eyes that keeps me going everyday. Those are the stories I need to hear at any level at any stage. That is how I find my hope.
Peace to you JakeinNY.
Deb
lovingwifeto Bob the Gambler, stage 4
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- February 9, 2011 at 5:58 am
INSPIRATION – the process of being mentally stimulated to do or feel something
JakeinNY,
It seems you have quite the debate in progress… stimulating. I do know every single person that comes to this sight comes looking for answers. It's why I came in the beginning. The reason why I still come is for INSPIRATION, when I am feeling disturbed and I make a post I receive words of encouragement from others who have gone down the same path as my husband & I. Grateful I am for this site and other like it.
So what is SUCCESS?
After my husband's first surgery last summer, a 10-inch scar with staples in his right leg/groin… his first week home he crawled onto his beloved Harley and went on a hour long ride. Did I know about it? NO! Was that a SUCCESS? Yes… to him. He made it home in one piece, alive to tell about it. Had I been home he wouldn't have gotten away with that to live and tell about it!
In January it was brain surgery… this placed him in stage 4 in just 7 months, 3 weeks to heal then it was on to the Gamma Knife then… back to work in 2 days. So who notices a few words are twisted now and then?
You want INSPIRATION?
You will find it after every surgery and healing a person has that is on this discussion board. If a person is on treatment? Ask them if they are tired, sick, or still working?
I asked my husband what you may be looking for and he thought it might be the "magic bullet". Everybody is looking for it. In the meantime look at your neighbor here and see their everyday life and how they are functioning. That is the INSPIRATION. That is the light in my husband's eyes that keeps me going everyday. Those are the stories I need to hear at any level at any stage. That is how I find my hope.
Peace to you JakeinNY.
Deb
lovingwifeto Bob the Gambler, stage 4
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- February 9, 2011 at 12:43 pm
I have always gotten my inspiration, from here, just here, if I read a personal story over time of a valient warrior who fought and lost, that is inspirational to me, to know of his/her battle won or lost. If I read over many many years their ups and downs (including my own) though not a stage 1V, I attempt to reach out and form a strong bond. I don't really think that I (am only speaking for me) would just read another section of battles won. Cos I feel the whole thing comes with diagnosis, fight, sucess and yes sometimes not sucess but all through it is inspiration, and we make that admiration to love connection to each other.
Reading sad with glad is what makes us who we are. it allows the patients a way to express joy and frustrations on sometimes a daily basis.
just my opinion.
Bonnie Lea
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- February 9, 2011 at 12:43 pm
I have always gotten my inspiration, from here, just here, if I read a personal story over time of a valient warrior who fought and lost, that is inspirational to me, to know of his/her battle won or lost. If I read over many many years their ups and downs (including my own) though not a stage 1V, I attempt to reach out and form a strong bond. I don't really think that I (am only speaking for me) would just read another section of battles won. Cos I feel the whole thing comes with diagnosis, fight, sucess and yes sometimes not sucess but all through it is inspiration, and we make that admiration to love connection to each other.
Reading sad with glad is what makes us who we are. it allows the patients a way to express joy and frustrations on sometimes a daily basis.
just my opinion.
Bonnie Lea
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- February 9, 2011 at 2:05 pm
Like many here, I would have to say "define" success. None of us are leaving this place vertically. To me, success was someone like Sharon, who managed to continue being funny, encouraging, positive and feisty while fighting this disease. She survived it much longer than many doctors expected her to.
The person I came to this place to help eventually died of melanoma. But while he fought it – and again, he survived longer than the stats said he "should" – he maintained grace, dignity, courage, and refused to give up. Did he "lose"? How do you know someone has succeeded? If someone is a long term survivor but eventually dies of the disease, would their story be yanked from the "inspiring" and "successful" line up?
We all want hope and I think maybe that's what you are really after. A place where hope is not diluted or undermined by other stories – the ones about treatments not working long, or at all, or people simply not responding to anything, or responding for a long time and then suddenly having to deal with a serious recurrence. But although there are some people who fit in that category, that is not, largely, the reality of advanced melanoma. It's a war, not a single battle, for most people.
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- February 9, 2011 at 2:05 pm
Like many here, I would have to say "define" success. None of us are leaving this place vertically. To me, success was someone like Sharon, who managed to continue being funny, encouraging, positive and feisty while fighting this disease. She survived it much longer than many doctors expected her to.
The person I came to this place to help eventually died of melanoma. But while he fought it – and again, he survived longer than the stats said he "should" – he maintained grace, dignity, courage, and refused to give up. Did he "lose"? How do you know someone has succeeded? If someone is a long term survivor but eventually dies of the disease, would their story be yanked from the "inspiring" and "successful" line up?
We all want hope and I think maybe that's what you are really after. A place where hope is not diluted or undermined by other stories – the ones about treatments not working long, or at all, or people simply not responding to anything, or responding for a long time and then suddenly having to deal with a serious recurrence. But although there are some people who fit in that category, that is not, largely, the reality of advanced melanoma. It's a war, not a single battle, for most people.
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- February 10, 2011 at 1:12 am
Yes. It would be difficult to determine what are considered "inspirational" stories. There would be a lot of disagreement here, which is very understandable. But eventually, it would be determined.
The benefit is that those that are looking for just such a thing can see these stories in an instant. It would especially help those that are newly diagnosed or newly staged.
I'm certainly not trying to offend ANYONE here, but I think that this section would be helpful to many. Just look at the first few posts after I began this. Those that have no interest in it don't have to look at it.
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- February 10, 2011 at 1:12 am
Yes. It would be difficult to determine what are considered "inspirational" stories. There would be a lot of disagreement here, which is very understandable. But eventually, it would be determined.
The benefit is that those that are looking for just such a thing can see these stories in an instant. It would especially help those that are newly diagnosed or newly staged.
I'm certainly not trying to offend ANYONE here, but I think that this section would be helpful to many. Just look at the first few posts after I began this. Those that have no interest in it don't have to look at it.
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- February 10, 2011 at 2:47 am
Those that have no interest in it don't have to look at it.
If the board is split up with that reasoning then why stop there? Why not go by stage. Separate carers. Alternative therapies. Death notices. NED. Patients only. Any other takers? Just pull apart the whole site. Have at it, Jake. Will you be providing the funds for this to be achieved?
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- February 10, 2011 at 2:47 am
Those that have no interest in it don't have to look at it.
If the board is split up with that reasoning then why stop there? Why not go by stage. Separate carers. Alternative therapies. Death notices. NED. Patients only. Any other takers? Just pull apart the whole site. Have at it, Jake. Will you be providing the funds for this to be achieved?
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- February 10, 2011 at 3:11 am
I don't come to this board all that often anymore. Since my husband passed away, it's often hard for me to hear the stories of people struggling with this damned disease. But you got my interest.
You say that it would be determined which stories would be considered inspirational (but by whom, I'm not sure. A panel of impartial judges? A jury of our peers?). But to my way of thinking, almost all of the stories are inspirational. Yes, my husband died. Would the story of his fight not be inspirational then? You would dismiss the courage he had in dealing with the setbacks, overlook the sheer joy of the times he was NED and could live a normal, wonderfully boring life? Would you dismiss the dignity with which he walked into hospice as not inspirational enough? Well, he certainly inspired the *#@! out of me!
Another poster asked if you would only include stories from people still living. A very valid question. I don't think you have thought fully about this. Don't you think it would be a huge insult to leave out even a single one?
I think that those "looking for just such a thing " are still in denial. Which none of us can afford to be.
While you may see it as a benign request, it has the potential to be a very polarizing issue. You may not be trying to offend anyone here, but it would have that very effect.
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- February 10, 2011 at 3:46 am
When I was in my darkest moments I found my inspiration from many but mostly from my friend Kathi from Poway. She was fighting and kept an unbelievable sense of humor and hope through out. I finally e-mailed her off line and asked her how she was doing it! I needed someone to tell me how to get out of my funk and the darkness. I knew that Kathi was religious and she knew that I had totally different beliefs. We talked a bit about religion and then we agreed to disagree. I saw that she also had her dark moments and I also saw the most courageous spirit that I have ever seen existed. Kathi and I closed the gap between SC and Calif. by talking non-stop on the phone. While many were on chat at 2am we were on the phone laughing.
If I had just gone to a section that was marked successes, Kathi's story would not have been there. She was a success story though, she lived every moment and enjoyed.
For those of us who have been on the board for a long time, we all have a "Kathi". There also have been many caregivers on this board who have been an inspiration. Reading about your care and dedication.
The board has changed over the past year, and as many of us know it has not been for the better (my opinion but due to circumstances I have remained here). We used to be a much tighter community. Because of the changes it's now harder to follow in chronological order. People look back and write on a post that was written 3 months ago, it pops up again as if it was just written. Sometimes that person has already failed a treatment that people are wishing them well with. I would fear that any more changes will finish anything that is left.
This thread has been going on for a few days. I do find it interesting that nobody from MRF has commented.
I think we are going to just have to agree to disagree. Inspiration abounds here.
Linda
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- February 10, 2011 at 3:46 am
When I was in my darkest moments I found my inspiration from many but mostly from my friend Kathi from Poway. She was fighting and kept an unbelievable sense of humor and hope through out. I finally e-mailed her off line and asked her how she was doing it! I needed someone to tell me how to get out of my funk and the darkness. I knew that Kathi was religious and she knew that I had totally different beliefs. We talked a bit about religion and then we agreed to disagree. I saw that she also had her dark moments and I also saw the most courageous spirit that I have ever seen existed. Kathi and I closed the gap between SC and Calif. by talking non-stop on the phone. While many were on chat at 2am we were on the phone laughing.
If I had just gone to a section that was marked successes, Kathi's story would not have been there. She was a success story though, she lived every moment and enjoyed.
For those of us who have been on the board for a long time, we all have a "Kathi". There also have been many caregivers on this board who have been an inspiration. Reading about your care and dedication.
The board has changed over the past year, and as many of us know it has not been for the better (my opinion but due to circumstances I have remained here). We used to be a much tighter community. Because of the changes it's now harder to follow in chronological order. People look back and write on a post that was written 3 months ago, it pops up again as if it was just written. Sometimes that person has already failed a treatment that people are wishing them well with. I would fear that any more changes will finish anything that is left.
This thread has been going on for a few days. I do find it interesting that nobody from MRF has commented.
I think we are going to just have to agree to disagree. Inspiration abounds here.
Linda
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- February 10, 2011 at 4:35 am
Hi Linda,
It's comments like yours that I appreciate. There were a few others that also posted in a respectful way. And then there were the sarcastic, mean spirited ones, and I don't want to go there. I have no use for people like that. I'm trying to suggest something that I think would be helpful to those that are looking for a quick fix of hope. I can imagine the fear in their minds. I would not want to change the special communication that goes on between people here.
Best Wishes,
Jake
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- February 10, 2011 at 4:35 am
Hi Linda,
It's comments like yours that I appreciate. There were a few others that also posted in a respectful way. And then there were the sarcastic, mean spirited ones, and I don't want to go there. I have no use for people like that. I'm trying to suggest something that I think would be helpful to those that are looking for a quick fix of hope. I can imagine the fear in their minds. I would not want to change the special communication that goes on between people here.
Best Wishes,
Jake
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- February 10, 2011 at 3:11 am
I don't come to this board all that often anymore. Since my husband passed away, it's often hard for me to hear the stories of people struggling with this damned disease. But you got my interest.
You say that it would be determined which stories would be considered inspirational (but by whom, I'm not sure. A panel of impartial judges? A jury of our peers?). But to my way of thinking, almost all of the stories are inspirational. Yes, my husband died. Would the story of his fight not be inspirational then? You would dismiss the courage he had in dealing with the setbacks, overlook the sheer joy of the times he was NED and could live a normal, wonderfully boring life? Would you dismiss the dignity with which he walked into hospice as not inspirational enough? Well, he certainly inspired the *#@! out of me!
Another poster asked if you would only include stories from people still living. A very valid question. I don't think you have thought fully about this. Don't you think it would be a huge insult to leave out even a single one?
I think that those "looking for just such a thing " are still in denial. Which none of us can afford to be.
While you may see it as a benign request, it has the potential to be a very polarizing issue. You may not be trying to offend anyone here, but it would have that very effect.
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- February 10, 2011 at 4:18 am
I hear lots of criticisms, along with sarcasm, but no solutions.
If the solution is to not have such a thing, then what would you suggest to me, washoegal, dawndion, and melanoma mom?
Wade through all of the posts and profiles here and on the internet to find enough cases that "inspire and give hope"? It would be much easier and lessen the time on high anxiety if such a section existed.
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- February 10, 2011 at 4:18 am
I hear lots of criticisms, along with sarcasm, but no solutions.
If the solution is to not have such a thing, then what would you suggest to me, washoegal, dawndion, and melanoma mom?
Wade through all of the posts and profiles here and on the internet to find enough cases that "inspire and give hope"? It would be much easier and lessen the time on high anxiety if such a section existed.
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- February 10, 2011 at 7:28 am
I'm confused, it looks awfully like there already is a place on the board for patient stories (and it even comes with pictures). Look up to your right when you reply to a post. – the solution you seek is right under your nose….
http://www.melanoma.org/learn-more/patient-stories
Patient Stories
When the future seems filled with uncertainty, often the most comfort comes from knowing someone else has been through the same situation. Through our experiences, we understand the best reassurance and support comes from stories shared by other patients and families in similar situations.
Jake, I am confused by your post.. there already is a place on the board for patients stories ( it even comes with pictures).
As I’m sure most young people believe, I thought I was too young to ever get melanoma.
I thought I was being proactive about my family history when I talked to dermatologists about my concerns…
Stay informed, vigilant, and positive and do not let melanoma rule your life!
I had another cancer survivor tell me that I was lucky I just had skin cancer. It was at that point that I realized people knew very little about the deadliest form of skin cancer.
I just found out the cancer has come back in my liver, I am choosing to remain optimistic. I am a fighter and a survivor.*These patient stories may not be typical. Individual symptoms, situations and circumstances vary and response to therapy is not always the same. Please consult your physician or health care provider regarding your condition, treatment or if you have any specific questions regarding your care.
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- February 10, 2011 at 7:28 am
I'm confused, it looks awfully like there already is a place on the board for patient stories (and it even comes with pictures). Look up to your right when you reply to a post. – the solution you seek is right under your nose….
http://www.melanoma.org/learn-more/patient-stories
Patient Stories
When the future seems filled with uncertainty, often the most comfort comes from knowing someone else has been through the same situation. Through our experiences, we understand the best reassurance and support comes from stories shared by other patients and families in similar situations.
Jake, I am confused by your post.. there already is a place on the board for patients stories ( it even comes with pictures).
As I’m sure most young people believe, I thought I was too young to ever get melanoma.I thought I was being proactive about my family history when I talked to dermatologists about my concerns…Stay informed, vigilant, and positive and do not let melanoma rule your life!I had another cancer survivor tell me that I was lucky I just had skin cancer. It was at that point that I realized people knew very little about the deadliest form of skin cancer.I just found out the cancer has come back in my liver, I am choosing to remain optimistic. I am a fighter and a survivor.*These patient stories may not be typical. Individual symptoms, situations and circumstances vary and response to therapy is not always the same. Please consult your physician or health care provider regarding your condition, treatment or if you have any specific questions regarding your care.
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- February 10, 2011 at 7:39 pm
I'm sorry, but I find that last paragraph to be so offensive that I cannot even describe the depth of it. And if you cannot see why (and I doubt that you will), then I pity you. Yes, I can see how time and high anxiety must be distressing for some people seeking instant gratification and validation that all will be well. Perhaps instead of people thinking how distressing it is to read something, their time would be better spent thinking of how it would must be to be actually experiencing it.
I honestly don't see that there is actually an issue that needs a solution, but if you're looking for what it sounds like you're looking for, all I would ask is that the board you are requesting not be labeled with the words hope or inspire. I'm thinking maybe "Happy place" or something like that. Either that, or I'll take a "Let's get real!" for those with a true interest in being inspired and hearing about others.
People at a certain place in their lives should not feel they cannot be honest because they may upset someone, and that has become exactly what this board now represents. It's a crying shame. Literally.
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- February 10, 2011 at 7:39 pm
I'm sorry, but I find that last paragraph to be so offensive that I cannot even describe the depth of it. And if you cannot see why (and I doubt that you will), then I pity you. Yes, I can see how time and high anxiety must be distressing for some people seeking instant gratification and validation that all will be well. Perhaps instead of people thinking how distressing it is to read something, their time would be better spent thinking of how it would must be to be actually experiencing it.
I honestly don't see that there is actually an issue that needs a solution, but if you're looking for what it sounds like you're looking for, all I would ask is that the board you are requesting not be labeled with the words hope or inspire. I'm thinking maybe "Happy place" or something like that. Either that, or I'll take a "Let's get real!" for those with a true interest in being inspired and hearing about others.
People at a certain place in their lives should not feel they cannot be honest because they may upset someone, and that has become exactly what this board now represents. It's a crying shame. Literally.
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- February 10, 2011 at 7:42 pm
Should have gone under Jake's post- sorry Linda (dratted insomnia :P)
Was referring to this:
"Wade through all of the posts and profiles here and on the internet to find enough cases that "inspire and give hope"? It would be much easier and lessen the time on high anxiety if such a section existed."
Apologies for any confusion caused…
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- February 10, 2011 at 7:42 pm
Should have gone under Jake's post- sorry Linda (dratted insomnia :P)
Was referring to this:
"Wade through all of the posts and profiles here and on the internet to find enough cases that "inspire and give hope"? It would be much easier and lessen the time on high anxiety if such a section existed."
Apologies for any confusion caused…
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- February 11, 2011 at 12:28 am
Jake,
I'm not nearly so eloquent as Nic, Linda and the others but I can get to the point especially when the issue is so off topic.
You have some of the most inspirational people around you. For all your yapping you can't see the freakin' forest for the trees.
If you want your "inspiration" served to you on a platter all nice and neat and in orderly little doses find a good preacher. If you want your inspiration from real life just observe what's around you.
I guess for all the typing you've done you haven't emailed Tim from the MRF yet. Have you bothered to find a way to fund the changes to the site? Your all hot air in my book.. Put up or shut up.
You're either gonna grow up and be part of the solution or you can wallow around and be part of the problem.
Jerry from Cape Cod
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- February 11, 2011 at 12:28 am
Jake,
I'm not nearly so eloquent as Nic, Linda and the others but I can get to the point especially when the issue is so off topic.
You have some of the most inspirational people around you. For all your yapping you can't see the freakin' forest for the trees.
If you want your "inspiration" served to you on a platter all nice and neat and in orderly little doses find a good preacher. If you want your inspiration from real life just observe what's around you.
I guess for all the typing you've done you haven't emailed Tim from the MRF yet. Have you bothered to find a way to fund the changes to the site? Your all hot air in my book.. Put up or shut up.
You're either gonna grow up and be part of the solution or you can wallow around and be part of the problem.
Jerry from Cape Cod
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- February 13, 2011 at 9:42 pm
I am in total agreement that there are many inspirational stories on this site. I simply thought that an additional section would be worthwhile. There were 3 other posts in favor of this. I have no problem with those that disagreed with us and did it with "class". To those that had to resort to the sarcasm and "mean-spiritedness", you just made yourselves look bad and I'm sure that the bulk of the members would prefer respectful replies, leaving the garbage out. I laugh sometimes when I see some of these posts because it's so easy to do this when one is not face to face with the person that they are insulting (p.s. I'm an athletic 6'0", 200 lb guy with a mean streak and I would certainly not bite my tongue in person after hearing the first insult). All of us are here because we have or had melanoma or know someone that does or did. I'm sure that we'd all rather not have experienced melanoma. The purpose is to use these posts to HELP and not be sarcastic, not ridicule, not insult. Respectful disagreement, help in a compassionate way without belittling the person in need, etc. This is the right way.
Finally, I did request the additional section from this site the same day that I started this "conversation". I have not heard a single word from the MRF. If I do, I'll take it from there.
For anyone that wants to continue slinging mud at me, I'll handle it in a different way…certainly NOT through this "thread". That would be doing a disservice to the posts that need the most attention.
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- February 14, 2011 at 2:11 am
Jake, you asked.. "why not have a section that patients can browse through to give more hope and inspiration. Am I missing something here? If it doesn't exist yet, then we should all demand that it be created"
And claimed …. "I'm trying to suggest something that I think would be helpful to those that are looking for a quick fix of hope."
I replied that it already existed.. even gave you directions. (So yes, I do believe you are missing something. Silly me, I actually thought you'd be delighted to learn the MRF has a link for posters to send in photos and real life stories of hope.)
http://www.melanoma.org/learn-more/patient-stories
[When the future seems filled with uncertainty, often the most comfort comes from knowing someone else has been through the same situation. Through our experiences, we understand the best reassurance and support comes from stories shared by other patients and families in similar situations.]
Ever think they may have not replied because A} Your request has proved to be redundant ..Or B) They don't know you're a mean streaked 6'0", 200 lb guy? (OK, that was sarcastic.)
Don't bother responding to this post; you'd be doing yourself a favour if you stopped swaggering and really paid attention to your words. All this complaining about wading through posts to find "enough cases that inspire and give hope" sure sounds like a lot of work for you. ( .. and infers there's a lot of stressful bad news here – how crass can you be?)
As for your handling 'mud' in a different way… may I suggest the off topic board. I mean this sincerely; the place needs a few posts. Tks
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- February 14, 2011 at 2:11 am
Jake, you asked.. "why not have a section that patients can browse through to give more hope and inspiration. Am I missing something here? If it doesn't exist yet, then we should all demand that it be created"
And claimed …. "I'm trying to suggest something that I think would be helpful to those that are looking for a quick fix of hope."
I replied that it already existed.. even gave you directions. (So yes, I do believe you are missing something. Silly me, I actually thought you'd be delighted to learn the MRF has a link for posters to send in photos and real life stories of hope.)
http://www.melanoma.org/learn-more/patient-stories
[When the future seems filled with uncertainty, often the most comfort comes from knowing someone else has been through the same situation. Through our experiences, we understand the best reassurance and support comes from stories shared by other patients and families in similar situations.]
Ever think they may have not replied because A} Your request has proved to be redundant ..Or B) They don't know you're a mean streaked 6'0", 200 lb guy? (OK, that was sarcastic.)
Don't bother responding to this post; you'd be doing yourself a favour if you stopped swaggering and really paid attention to your words. All this complaining about wading through posts to find "enough cases that inspire and give hope" sure sounds like a lot of work for you. ( .. and infers there's a lot of stressful bad news here – how crass can you be?)
As for your handling 'mud' in a different way… may I suggest the off topic board. I mean this sincerely; the place needs a few posts. Tks
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- February 13, 2011 at 9:42 pm
I am in total agreement that there are many inspirational stories on this site. I simply thought that an additional section would be worthwhile. There were 3 other posts in favor of this. I have no problem with those that disagreed with us and did it with "class". To those that had to resort to the sarcasm and "mean-spiritedness", you just made yourselves look bad and I'm sure that the bulk of the members would prefer respectful replies, leaving the garbage out. I laugh sometimes when I see some of these posts because it's so easy to do this when one is not face to face with the person that they are insulting (p.s. I'm an athletic 6'0", 200 lb guy with a mean streak and I would certainly not bite my tongue in person after hearing the first insult). All of us are here because we have or had melanoma or know someone that does or did. I'm sure that we'd all rather not have experienced melanoma. The purpose is to use these posts to HELP and not be sarcastic, not ridicule, not insult. Respectful disagreement, help in a compassionate way without belittling the person in need, etc. This is the right way.
Finally, I did request the additional section from this site the same day that I started this "conversation". I have not heard a single word from the MRF. If I do, I'll take it from there.
For anyone that wants to continue slinging mud at me, I'll handle it in a different way…certainly NOT through this "thread". That would be doing a disservice to the posts that need the most attention.
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- February 15, 2011 at 9:32 pm
Wow! That's all I can really say. I was truly happy to read the title of this post until I read the replies.
My mother is newly diagnosed stage 4, brain, lung and stomach and I feel like my whole world has been shattered in the last month. I am an only child, no other (blood) family apart from my mum and am 6 months pregnant with my first baby. My mum and I are best friends, she is my world and I am terrified that I am going to loose her every single day.
I am not in denial, we know it's bad, I started visiting this forum about 3 weeks ago looking for hope and inspiration and honestly, for stories of people who have survived this disease. You have all been there, and I know you are aware of the emotional stages that one goes through after a diagnosis like this. Personally, the stage we are at, although I'm encouraged by the battlers in this forum, the amazing stories of people who never give up the fight and the courage of those who have lost it, I, along with my mum feel a weight lift when we read the story of someone who has battled and won! Those who are NED, those with shruken tumours or sucess with treatment. I WANT to read these stories, these are what gives me hope at the moment.
No, success cannot be defined, but don't you think if a dedicated area could help someone like me and my mum along on this journey it would be positive?
I search the net every day for stories of survival, I send them to my mum and I know that this helps her sleep at night. I know they help ease what I imagine are the terrifying thoughts going through her head every day while we wait to hear what they can or can't do for her. I have now run out of those stories. I asuume when Jake says 'success stories' he means 'survival stories'.
I thought this forum was for support, where people come to 'help' one another and tell their stories. I am truly saddened to read some of these sarcastic, unsupportive and critical replies. The replies to this post just seem to be a group that have banded together to attack the original poster that maybe they have had disagreements with before.
Jake, I don't know you, but for where I am in this journey, I truly appreciate your suggestion. Thank you and I think this is a great idea.
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- February 15, 2011 at 11:06 pm
Hi there, I am so sorry to hear about your mother. And you are right, the disagreement started before this post. At issue here (for me anyway) is a poster (Jake) who has not followed Dr Nicholas Gonzalez's controversial alternative medicine protocol – but he keeps talking it up. This is very thoughtless of him, as the protocol is extreme in nature (up to 200 supplements per day, along with daily coffee enemas and no painkillers) and not something I'd want a family member to blindly follow because they heard about it here -and no one spoke out against it.
So I reacted to his apparently innocent request because I felt it could be an excuse to post a host of alt medicine testimonials – when the reality is, the MRF already has a section for patient stories. And you only have to post and ask for inspiration (anon or not/profile or not) – and you will get many many responses. These are current responses, so if you have questions about doctors, treatment centers or current trials, you are able to access the information in real time, instead of relying on testimonials that can quickly go out of date. Plus testimonials are not respected by researchers, so while they give hope, it is possible they may do more harm than good. In fact, there was a patient story posted recently by someone who said he was cured by homeopathic medicine.. I googled his name and he was already dead. If someone had relied on that story to decide how to treat a loved one they may have lived to regret it.
I am sorry you were offended by what you read here, perhaps you will find hope for your mother in this thread – linda
http://www.melanoma.org/community/mpip/stage-ivroll-call-undead-please
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- February 15, 2011 at 11:06 pm
Hi there, I am so sorry to hear about your mother. And you are right, the disagreement started before this post. At issue here (for me anyway) is a poster (Jake) who has not followed Dr Nicholas Gonzalez's controversial alternative medicine protocol – but he keeps talking it up. This is very thoughtless of him, as the protocol is extreme in nature (up to 200 supplements per day, along with daily coffee enemas and no painkillers) and not something I'd want a family member to blindly follow because they heard about it here -and no one spoke out against it.
So I reacted to his apparently innocent request because I felt it could be an excuse to post a host of alt medicine testimonials – when the reality is, the MRF already has a section for patient stories. And you only have to post and ask for inspiration (anon or not/profile or not) – and you will get many many responses. These are current responses, so if you have questions about doctors, treatment centers or current trials, you are able to access the information in real time, instead of relying on testimonials that can quickly go out of date. Plus testimonials are not respected by researchers, so while they give hope, it is possible they may do more harm than good. In fact, there was a patient story posted recently by someone who said he was cured by homeopathic medicine.. I googled his name and he was already dead. If someone had relied on that story to decide how to treat a loved one they may have lived to regret it.
I am sorry you were offended by what you read here, perhaps you will find hope for your mother in this thread – linda
http://www.melanoma.org/community/mpip/stage-ivroll-call-undead-please
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- February 16, 2011 at 3:00 am
Linda,
May god bless you and your mom. Thank you for having the COURAGE to support this topic and point out some of the unnecessary stuff that goes on. Your paragraph: "I thought this forum was for support, where people come to 'help' one another and tell their stories. I am truly saddened to read some of these sarcastic, unsupportive and critical replies. The replies to this post just seem to be a group that have banded together to attack the original poster that maybe they have had disagreements with before." hit the nail on the head. I'm sure you saw that I never want to take away from the communication that goes on here, because it is precious, just would like to see an "extra" for people just like you and your mom. As for Gonzalez, if Linda (bcl) means that I'm a supporter of him by "talking him up", I am neither a supporter nor a "naysayer"…just want to see people like him fairly investigated and either allowed to continue or shut down. It's not about me (unlike some others here). It's about all of US.
Getting back to your mom. I haven't read your profile yet but please provide us all with information about where your mom lives as maybe someone here can recommend a great oncologist, great surgeon, great treatment, etc. Just start a new topic or thread. Do all that you can for your mom, your baby, and you. If it were my mom, I would plead with her to eat a real healthy, minimal sugar, minimal white bread, white pasta (the term escapes me now) diet if she can eat at all. There is thought to be some connection between these things and insulin rise and higher rate of tumor growth. It won't make the tumors go away, but it may slow down their growth. You can research this.
Best wishes, Jake.
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- February 16, 2011 at 3:00 am
Linda,
May god bless you and your mom. Thank you for having the COURAGE to support this topic and point out some of the unnecessary stuff that goes on. Your paragraph: "I thought this forum was for support, where people come to 'help' one another and tell their stories. I am truly saddened to read some of these sarcastic, unsupportive and critical replies. The replies to this post just seem to be a group that have banded together to attack the original poster that maybe they have had disagreements with before." hit the nail on the head. I'm sure you saw that I never want to take away from the communication that goes on here, because it is precious, just would like to see an "extra" for people just like you and your mom. As for Gonzalez, if Linda (bcl) means that I'm a supporter of him by "talking him up", I am neither a supporter nor a "naysayer"…just want to see people like him fairly investigated and either allowed to continue or shut down. It's not about me (unlike some others here). It's about all of US.
Getting back to your mom. I haven't read your profile yet but please provide us all with information about where your mom lives as maybe someone here can recommend a great oncologist, great surgeon, great treatment, etc. Just start a new topic or thread. Do all that you can for your mom, your baby, and you. If it were my mom, I would plead with her to eat a real healthy, minimal sugar, minimal white bread, white pasta (the term escapes me now) diet if she can eat at all. There is thought to be some connection between these things and insulin rise and higher rate of tumor growth. It won't make the tumors go away, but it may slow down their growth. You can research this.
Best wishes, Jake.
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- February 15, 2011 at 9:32 pm
Wow! That's all I can really say. I was truly happy to read the title of this post until I read the replies.
My mother is newly diagnosed stage 4, brain, lung and stomach and I feel like my whole world has been shattered in the last month. I am an only child, no other (blood) family apart from my mum and am 6 months pregnant with my first baby. My mum and I are best friends, she is my world and I am terrified that I am going to loose her every single day.
I am not in denial, we know it's bad, I started visiting this forum about 3 weeks ago looking for hope and inspiration and honestly, for stories of people who have survived this disease. You have all been there, and I know you are aware of the emotional stages that one goes through after a diagnosis like this. Personally, the stage we are at, although I'm encouraged by the battlers in this forum, the amazing stories of people who never give up the fight and the courage of those who have lost it, I, along with my mum feel a weight lift when we read the story of someone who has battled and won! Those who are NED, those with shruken tumours or sucess with treatment. I WANT to read these stories, these are what gives me hope at the moment.
No, success cannot be defined, but don't you think if a dedicated area could help someone like me and my mum along on this journey it would be positive?
I search the net every day for stories of survival, I send them to my mum and I know that this helps her sleep at night. I know they help ease what I imagine are the terrifying thoughts going through her head every day while we wait to hear what they can or can't do for her. I have now run out of those stories. I asuume when Jake says 'success stories' he means 'survival stories'.
I thought this forum was for support, where people come to 'help' one another and tell their stories. I am truly saddened to read some of these sarcastic, unsupportive and critical replies. The replies to this post just seem to be a group that have banded together to attack the original poster that maybe they have had disagreements with before.
Jake, I don't know you, but for where I am in this journey, I truly appreciate your suggestion. Thank you and I think this is a great idea.
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