How about a devoted, highlighted section for success stories on this site?

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2/6/2011 12:41pm
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Replies: 43

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.

Do the best you can.

Great idea- people are always asking for success stories.  This would give them one place to go, it would be be especially helpful if it was broken down into stages.

Life is too short to be anything but happy. Falling down is a part of life, getting back up is living.

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.

Do the best you can.

That would be a wonderful idea - I just got some very devistating news and I really need to know that people can beat this.

I refuse to let this beat me. I WILL NOT LEAVE MY GIRLS! MELANOMA CAN BITE ME!

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

It's about kickin' Melanoma's butt!

"Meh. Get on with it. Do not feed rabid monkeys. To fear is one thing. To let fear grab you by the tail and swing you around is another." in memory of NicOz

:) 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 :P 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)

Meh. Get on with it.

Do not feed rabid monkeys.

To fear is one thing. To let fear grab you by the tail and swing you around is another

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

It's about kickin' Melanoma's butt!

"Meh. Get on with it. Do not feed rabid monkeys. To fear is one thing. To let fear grab you by the tail and swing you around is another." in memory of NicOz

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 :D

All great here- you should see my noggin'. Tis a sight to behold!! Actually, I think I'll email you a pic...

Meh. Get on with it.

Do not feed rabid monkeys.

To fear is one thing. To let fear grab you by the tail and swing you around is another

PS:  Not trying to compete, mind you, but having 12 "visible" brain tumors.....just sayin'....gimme a few years and I may be forced to overtake your record status !!   ho..ho...hoooooo.

I'm Here for Now, I've got the rest of my life to die; and if so, old age could be overated and God does exist.

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*

:D

xxx

Meh. Get on with it.

Do not feed rabid monkeys.

To fear is one thing. To let fear grab you by the tail and swing you around is another

Yeah, okay, i'll kiss the ring.  I'll try my damnest not to best you, for sure.  Meh-while, I'll hold the crown for you and keep it polished!    Love ALL, Grady.

I'm Here for Now, I've got the rest of my life to die; and if so, old age could be overated and God does exist.

Nic - I'm glad you bothered to come on here.  I find your story resounding with hope.

KatyWI

Just keep going!

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.

I'm Here for Now, I've got the rest of my life to die; and if so, old age could be overated and God does exist.

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.

I'm me, not a statistic. Praying to not be one for years yet.

Jerry, I'm not sure about who did the riding - you, or the horse! And I bet you've heard more than one reference to being ridden hard and put up wet!

Talk about inspiring!

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!!!

Do the best you can.

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

It's about kickin' Melanoma's butt!

"Meh. Get on with it. Do not feed rabid monkeys. To fear is one thing. To let fear grab you by the tail and swing you around is another." in memory of NicOz

Define success. I dare you.

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

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.

Do the best you can.

Well, you could just read the profiles of people you find inspiring. That's already available.

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

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

Just Keep on Hanging In

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.  

Well said Lori!

Vermont_Donna

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.

Do the best you can.

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?

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.

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

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

Do the best you can.

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