Off-Topic Forum

The MPIP Off-Topic Forum is a community bulletin board that provides the melanoma community with a safe space to share experiences and to give and find support from others who can relate to having or caring for someone with a melanoma diagnosis. Please note: if you have an urgent question about melanoma to ask the community, visit the main MPIP Forum.

MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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Jocelyn's picture
Replies 7
Last reply 9/21/2010 - 4:47pm

Hey Lady Gaga is headlining a rally right near where I live. It's in support of repealing the "don't ask, don't tell" bullshit thing.

I think I will wander over there!

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Shelby - MRF's picture
Replies 38
Last reply 9/28/2010 - 4:28pm

Hello everyone,

Per some recent advice I have decided to post this on the off-topic bulletin board as well...

We at the MRF are trying our very best to increase membership and conversation on the bulletin board and on chat.  The bulletin board seems to be thriving, but unfortunately, the chat room is not...to say the least.  So, here are my questions to you:

1.  What would make YOU go into the chat room?

2.  Would you drop in the chat room if we had scheduled guests chatting about various topics?

3.  If so, what topics would you want to chat about?

4.  If so, who would you want to hear from?  Docs, patients, caregivers, Tim (our Director), etc.??

5.  If so, how often would you like to see scheduled chats?  Once/month, twice/month, every week, etc.??

We thank you so much for taking the time to help improve our online community!  Your opinions are very important to us and will not only help you, but also future members of our online community!

Sincerely,

Shelby Moneer, MRF Health Educator 

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I did, and I really liked it.

 

(Just talking to see if anyone's there :)

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dian in spokane's picture
Replies 1
Last reply 9/22/2010 - 6:13pm
Replies by: LV

Maybe about 6 pm? pacific that is..9pm eastern.

drop on in and chat!

dian

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Anonymous's picture
Replies 3
Last reply 9/23/2010 - 6:56pm
Replies by: dian in spokane, Anonymous

Many of us have been here a long time, and can't help but compare how things are now with how they used to be. Like most websites, this one was freer, easier, and funner years ago before a lot of controls and limitations set in. You have all described many of these, so I won't repeat. I will only add that most newer websites that I have seen are less fun and less user-friendly than those that emerged early in the babyhood of the internet. It seems to be the nature of the Web.

But what I am wondering, is how do the newer participants or viewers, who were not nurtured for years on the earlier version of this site, find it? I notice many newer posters on the main board expressing the same kind of joy and gratitude about this board, that most of us did for years before things changed. Since we clearly want more and more patients to benefit by this site, I would like to hear how the newer ones react to it. It drives to the heart of the purpose we are trying to serve.

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jag's picture
Replies 4
Last reply 9/23/2010 - 12:55am
Replies by: Anonymous, bcl, NicOz

Right after your neurosurgeon removes the stitches that have been irritating you for 3 weeks.

Insert Generic Inspirational Motto Here

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is the way that new replys bring the post to the top.  It wasnt' a feature of older board software like the evolution of the MPIP.  It's hard to follow older posts and put them in perspective. It's human nature to think if something is at the top it's a new discussion.  It's great if your on a forum discussing Camping, pets or just about anything else, but in my opinion it really s*cks with a cancer board. 

Tonight was the worst.  I returned from a meeting, turned on the computer, navigated to MPIP and the first post on the main forum was a thread started in July by a member who has recently entered hospice.  Maybe I'm just too sensitive recently.  But I think I'm about to give up the battle over this community.  It's now the MRF Bulletin Board.... Long live the MPIP.

It's not that I try to forget about folks because I ride a bike with names of Warriors and Angels every day abd I add more on a regular basis.  I give thought to them many times a day.  I guess I've just got to pull back and find another place to spend more time.

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

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TinaR's picture
Replies 12
Last reply 9/24/2010 - 9:15am
Replies by: TinaR, Kimmer, jag, KyCyn, Bonnie Lea

*~* Thanks to our President ...

1.  Insurance companies will no longer be permitted to exclude children because of pre-existing health conditons ( 72,000 children will be covered today!) 

2. Insurance companies will be prohibited from imposing lifetime limits on benefits  

3. Customers who join new plans are permitted to keep their old doctors AND appeal reimbursement issues to a third party *~*

And others...but these are what make me happy today  *~* smiley *~*

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KyCyn's picture
Replies 9
Last reply 9/28/2010 - 4:56pm
Replies by: Yawn, jag, NicOz, KyCyn

I saw your posting in the 'chat' stream, but since we can't change subject lines I thought I'd start a new one to say

 

cheekyyesGood To See You Here!!!!!  smileyheart

 

(Emoticons in honor of John and Roxanne :)

 

How's things with you and your daughter these days?

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jag's picture
Replies 7
Last reply 9/24/2010 - 8:19am
Replies by: Kimmer, Bonnie Lea, jag

First link is an example.  If you download it, it actually has the sound included. 

http://www.raincitystory.com/flash/screenclean.swf

download:

http://www.meetup.com/pug-24/boards/thread/4181818?thread=4181818

(did I mention how much I hate faggy little dogs and cats?)

Insert Generic Inspirational Motto Here

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dian in spokane's picture
Replies 4
Last reply 9/24/2010 - 5:23pm
Replies by: StanN, Tim--MRF, TinaR, Kimmer

I promised Cyn I would write about my travels, although it would take several posts to cover them all. It was the upoming ones that Rox referred to..but, that's for later.

I've been gone almost all summer, and while some have not been posting because of the board changes, my lack of posting has more to do with the fact that I've been using my tiny netbook, which is wretched for the board, and which..for some unfathomable reason, just suddenly changes pages on me halfway through long posts. I'm on my husband's 'bigboy' right now (the wide screen desktop) and it makes all the difference!

Soon my brand new 17 inch laptop will be hooked up and running, and I'll only use the tiny one for travel.

I've been gone since my trial started back in June (even before, we started traveling in may) The traveling back and forth from California for the trial has been tedious at times, with many wasted hours in airports and hanging around the Hoag, but many other hours walking on the beach, watching the sunset on the pacific and driving around to different destinations.

I don't know if I shared our trip to Lake Arrowhead, a destination of my childhood. My family had a cabin up there and we would go winters and play in the snow, and summers and play on the Lake. I had my first frostbite there, and my horrible experience with nettles, and also a sunburn that made me so sick I had hallucinations..and probably gave me melanoma. I had a lot of wonderful memories of Arrowhead, but had totally forgotten the terrifying drive up there, along a highway called "The  Rim of the World Highway" It was a revelation..as the source of my long time fear of mountain passes.

In between the many trips to California, and the many trips to Las Vegas, we crammed the summer full of music, going to one festival after another all summer. I would fly down to California, get a shot, come home, fill the motor home with food and off we would go.

After many months of hard work, my band finally released our CD, so we spent a lot of time playing assorted stupid gigs and selling CDs. including getting to play a prime dinner time show at our town's local Labor Day Festival: Pig Out in the Park. Just as full of food and beer as you can imagine. If you are interested in hearing a little sample, you can check it out here: http://www.cdbaby.com/cd/DeadFiddlersSociety1

It's almost a relief to have summer come to an end. I've had a whole week here in my own house alone (Bob's been in Vegas) and it's been peaceful and fine, even though I get PET scan results tomorrow!

My cats have thrived without me, growing fat and sassy. The orange girl is vastly entertaining, throwing her little squeaky mouses into the air 5 or 6 ft up. The tuxedo cat, who I am convinced was born wild, is outside hunting real vermin most of the time. He comes in for his daily dose of steroids. He and I were starting to get along until he ran between my feet earlier this month and brought me tumbling down in the kitchen. He was under me. Since then he's been steering clear of me again. The orange one is very lovable though. She's still not a lap cat, but she will come demanding attention. We got them a year ago this week, so it's taken a while.

Mean Joe Greene...I'm sure you all remember that my 92 yr old father in law started driving his new RV from Vegas to NY last july and the folks at the the Flying J started it on fire. His insurance paid out on that, and he got another one from the lot next door in St George and drove it home to Vegas last month. Earlier this month he decided he would drive it up here to Spokane for the Jewish holidays. He's told me he doesn't really ever want to fly again, but he always comes here for Yom Kippur because he likes our temple. So...Sept 10th or thereabouts he headed up I 15 again...made it just PAST St George this time and blew a rod in the RV. I'm kind of hoping he gets a little Kia or something and gives up on the whole RV thing.

The upcoming girlie travel Rox mentioned has to do with two exciting upcoming girlie events. Something I rarely get involved in. I mean, mostly I hang out with guys, just because most of the musicians I know are guys. But that's changed over the years, more and more women musicians have moved into my circle, and the last few years, some of them have become dear friends. One of them goes every winter to Hawaii for a few months and surfs. And another of them has managed to organize a group of us, 4 or 5, who have all committed to a trip over there to Hawaii in January. January is a pretty nice time to get away from WA state.

Before that, next month, all of my sisters and I are having a weekend getaway on Vashon Island out there west of Seattle. It will be the first time we've all been together since my father's funeral, and the last time that before that we were all children.

Also on the horizon, a possible trip east for a meeting with yet another group of women friends, who I sometimes call 'the chub club' We all 'met' on a message board 10 yrs ago and have continued a sort of email penpal group all of these years. In that time, our group has been touched by the death of a spouse, divorce, cancer, marriage, childbirth, kids graduating college, grandchildren being born. We've shared things with each other that even our families don't know. Only a few of us have met each other, but we still feel like lifelong friends. We are such a diverse group, that I can't quite imagine how we will all find the time to meet, but I'll try to be a part of it if it happens.

OH..and I FINALLY get to meet the  DIVA! DebbieVA that is! She's coming to Seattle next month to compete in some millions strong vocal competition and DonW and I are gonna have some beers with her..or..wine..or something. And show her some NW sunsets and such. I'll play that Angel Band and see what it sounds like to have angelic adeline voices singing along on the chorus..Come and around me stand. ..or..maybe I'll find something more upbeat<G>

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Bonnie Lea's picture
Replies 5
Last reply 9/30/2010 - 11:46am

I was just checking in before I shut off computer.  I see that the subject matter line is now in Blue Print.  I wonder if perhaps that means we will have a way to see if we have read the posts?  that would be nice.

 

Bonnie Leaenlightened

Just Keep on Hanging In

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tanyasteve's picture
Replies 10
Last reply 9/28/2010 - 4:22pm

For anyone who didn't hear, I was in a very bad horseriding accident on Sept. 13th. I was flown from my daughters house in Hartel, Colorado to a level 1 Trauma center in Denver. I was in a coma for 2 weeks. The doctors gave very little hope for my survival. My son, a paramedic, agreed with them and told my wife that if my body survived overnight I would most likely be brain dead. The day after one of the trauma doctors told my daughter that my organs WOULD start to fail and that they needed to just let me go, I opened my eyes. In the accident, every bone in my face was broken. I was on a ventalator, feeding tube, cath, and all kinds of IV's. I had reconstructive surgery to put my face back together. I was taken from the Trauma ICU to a Long Term Acute Care Facility. I have been here for three weeks and will be released tomorrow to home care. Most people leave this type of care to a inpatient rehab or skilled nursing home. I am not like most people and will be skipping those levels. I have been encouraged by the emails, postings, phone calls, ect from all of you. Thank you for all the prayers and help to my family.

My vision is not as good as it was and I don't read a computer screen well right now. I am hoping to get a bigger screen and have my vision improve so that I can be on here more. I missed the interaction with all the great people on here. I look forward to my late night chats(and anytime chats) with you all again. My daughter is installing high-speed internet at her house for me so hopefully I can be on even more than before. You can email me at tjellis@erols.com to send personal messages.

Semper Fi, JerryfromFauq

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King's picture
Replies 6
Last reply 9/29/2010 - 6:34am

I know many of the old timers are not here any more....one reason or another.  However, I just can't let today get by without reminding everyone that it was 3 years ago today that SheilaNB  left us.  I will never forget that woman.  I know NancyD recently met up with Norm.    We miss you, Sheila!!!!

Stay Strong
Kathie

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BillMFl's picture
Replies 5
Last reply 9/26/2010 - 9:56pm
Replies by: BillMFl, Jocelyn, Janner

Closed the cabin and boat and left Maine. On my way to Santa Fe via Denver and western Colorado. Parked in Carlisle, Pa tonight.  Another 1500 miles to Denver.  Looooong drive. Hope I still annoy some of you. Hugs to the rest. :)

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