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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MarieM's picture
Replies 3
Last reply 3/18/2013 - 11:01pm
Replies by: King, jag, Janner

Good luck with the IL2...I know you will do well!
Thinking of you every minute and sending you my love.

Love, Greatest big hugs, Marie

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Colleen66's picture
Replies 1
Last reply 3/15/2013 - 8:34am
Replies by: jag

I'm a believer in the least amount of sugar in my diet.  I do supplement at times with Stevia.  Since Stevia is a natural sugar like regular sugar, should I cut it out of my diet too?  I otherwise have a very healthy diet.  I eat gluten free, mostly whole foods.  Very little processed food.  I eat fruits, vegetables,  nuts, seeds, eggs, limited beef, chicken, fish and rice and rice noodles.  I also use supplements to make sure I'm getting all my vitamins and minerals.

Sugar vs. Stevia.

Thank you 

Colleen 

Live!

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Colleen66's picture
Replies 1
Last reply 3/12/2013 - 2:44pm
Replies by: susanr

My head is spinning, anxiety is over the top, depression kicking in.  Spring cleaning all days to give my mind a rest.  Could really use the chat room.

Colleen 

Live!

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Hello fellow warriors!

I am a stage 3 melanoma survivor doing several small fundraisers for MRF throughout the year. I'm looking for women whose lives have been touched by melanoma (either directly or indirectly) who could help me with my fundraisers. The time committment is very minimal and it does not matter where you live.  Please send me an email for more into at welgetracy@gmail.com and put MRF Fundraising in the subject line.

Thanks for your help!!

Tracy Welge

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ruby's picture
Replies 2
Last reply 3/6/2013 - 12:37pm
Replies by: ruby, POW

Hi all

I would welcome anyones advice here please

I first had a 0.9mm melanoma remove from my skin in 2008 31/12/2012 I was diagnosed with a 3 mm local recurrent in the scar line this has been removed and I have been lucky enough to be told negative node after SLNB.

 

I have now bee told to take interferon for 4 weeks high dose and then 12 months delf administered... I have a 8 month old baby to look after a 13 year old daughter and am scared I will not cope whilsy on the course I also live in ireland away from all my family I am put off my the bad side effects but also dont want to regret not taking this chance to see off the monster  your thoughts advice anythink welcomed as this is the hardest of decisions..

 

rachel

x

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BonnieLea's picture
Replies 0

I think I am maybe 9 yearrs NED? with a side route to LMM  and cant count the rest of the crap...cos it was not Mel.  so I am choosing NED for 9 years. only a few hiccups along the way.

Hang in There

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JerryfromFauq's picture
Replies 4
Last reply 3/6/2013 - 8:23am
Replies by: BonnieLea, jag, BillMFl, POW
Military Pay
CINDY WILLIAMS was appointed by Obama as  an Assistant Director for NATIONAL SECURITY in the Congressional Budget O ffice.....

This is an Airman's response to Cindy Williams' editorial piece in the Washington Post about MILITARY PAY, it should be printed in all newspapers across America .

Cindy William wrote a piece for the Washington Times denouncing the pay raise(s) coming service members' way this year citing that she stated a 13% wage increase was more than they deserve.

A young airman from HillAFB responds to her article below. He ought to get a bonus for this.

"Ms Williams:

I just had the pleasure of reading your column, "Our GI's earn enough" and I am a bit confused. Frankly, I'm wondering where this vaunted overpayment is going, because as far as I can tell, it disappears every month between DFAS (The Defense Finance and Accounting Service) and my bank account. Checking my latest earnings  statement I see that I make $1,117.80 before taxes per month. After taxes, I take home $874.20. When I run that through the calculator, I come up with an annual salary of $13,413.60 before taxes, and $10,490.40 after.

I work in the Air Force Network Control Center where I am part of the team responsible for a 5,000 host computer network. I am involved with infrastructure segments, specifically with Cisco Systems equipment. A quick check under jobs for "Network Technicians" in the Washington , D.C. area reveals a position in my career field, requiring three years experience in my job. Amazingly, this job does NOT pay $13,413.60 a year. No, this job is being offered at $70,000 to $80,000 per annum............ I'm sure you can draw the obvious conclusions.

Given the tenor of your column, I would assume that you NEVER had the pleasure of serving your country in her armed forces.

Before you take it upon yourself to once more castigate  congressional and DOD leadership for attempting to get the families in the military's lowest pay brackets off of WIC and food stamps, I suggest that you join a group of deploying soldiers headed for AFGHANISTAN ; I leave the choice of service branch up to you. Whatever choice you make though, opt for the SIX month rotation: it will guarantee you the longest possible time away from your family and friends, thus giving you full "deployment experience."

As your group prepares to board the plane, make sure to note the spouses and children who are saying good-bye to their loved ones. Also take care to note that several families are still unsure of how they'll be able to make ends meet while the primary breadwinner is gone. Obviously they've been squandering the "vast" piles of cash the government has been giving them.

Try to deploy over a major holiday; Christmas and Thanksgiving are perennial favorites.. And when you're actually over there,  sitting in a foxhole, shivering against the cold desert night, and the flight sergeant tells you that there aren't enough people on shift to relieve you for chow, remember this: trade whatever MRE's (meal-ready-to-eat) you manage to get for the tuna noodle casserole or cheese tortellini, and add Tabasco to everything. This gives some flavor.

Talk to your loved ones as often as you are permitted; it won't be nearly long enough or often enough, but take what you can get and be thankful for it. You may have picked up on the fact that I disagree with most of the points you present in your open piece.

But, tomorrow from KABUL , I will defend to the death your right to say it.

You see, I am an American fighting man, a guarantor of your First Amendment right and every other right you cherish...On a daily basis, my brother and sister soldiers worldwide ensure that you and people like you can thumb your collective noses at us, all on a  salary that is nothing short of pitiful and under conditions that would make most people cringe. We hemorrhage our best and brightest into the private sector because we can't offer the stability and pay of civilian companies.

And you, Ms.. Williams, have the gall to say that we make more than we deserve?”
A1C Michael Bragg, Hill AFB AFNCC
IF YOU AGREE, PLEASE PASS THIS ALONG TO AS MANY PEOPLE AS POSSIBLE AND SHOW YOUR SUPPORT OF THE AMERICAN FIGHTING MEN AND WOMEN.
I'm me, not a statistic. Praying to not be one for years yet.

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Oh Boy, you guys are all great.....  You never can know just how much you cheer me up.  I am only thinking of CAMPING in approx 125 days.  Grundy Lake here we come.

As I am looking out the window at that mountain of ploughed snow in the centre of the court....my mind strays to the loverly soft water of Northern Ontario. Our opening meal will not be Lobisters (I know I know I am deveating from the norm)  but we decided on RIBS  made here slathered in sauce frozen solid then transported up to be finished off on a BBQ

Of course Champagne will flow....well what little we can buy.  But ahhhhh the fear of critters, the either hot, or wet, or cold weather.  The bugs that eat my feet, and make me have to actually seek medical aid, and did I mention Bears?  oh me oh my.   But this month thus far I have three medical appts one today, one tomorrow, and one on the 28th.  Who knows what else.  Oh ya and Bob is doing fine since his horrific crap of last may.

He will take it easy, cos I am not ready for him to just pop off.  I try to keep his stress down, and I know you guys think that would be hard on me...ya it is hahha but Love does wonderful things.

Bill, Jerry, and Jag I love you guys.  I love you all and I am trying to sort out my crowded mind to get back to where I want to be.  SHUNTS also suck.  But not as bad as Cancers.

We need fun guys and guyetts.  Lets just DO EEET!

 

Love Bonnie Lea

Hang in There

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POW's picture
Replies 5
Last reply 3/3/2013 - 11:02pm

 

Thanks to all of you so warmly sharing your advice and experiences, my "last visit" with my brother went extremely well-- much better than I expected. You really helped!

Most of you suggested that I let my brother set the tone and the pace of our discussions and that is what I wanted to do. Unfortunately, that's not quite possible with my brother because one of his brain mets is pressing against the languge center in his brain-- both speech and writing. So although he can understand everything you say, he can only respond with a "Yes" or "No" or sometimes a single word. So he can't initiate any discussions. However, I did gently bring up the 2 or 3 things I specifically wanted to talk about and by playing "20 Questions" he was able to communicate to me what he wanted to communicate. I was surprised that he didn't dive away from the emotional or spiritual discussions and he was unusually patient with the "20 Questions" approach (usually he throws up his hands in frustration after 30 seconds, but this time he stuck with it), so I think he really did want to make his wishes known about these topics. I am probably the only one in the world who would be able to have even this limited degree of communication with him, so I am very glad that I took this time to visit and converse.

But overall, the visit was not heavy or emotional. Most of the time we just hung out while we watched TV or I chattered on about family gossip or current events. One day I took him to visit some of his best friends and we sat around drinking beer and talking about sailing. My brother got a little drunk (don't worry, alcohol won't hurt him) and I played a CD of his favorite Irish band in the car on the ride back to the nursing home and he was having a ball. Another day I sent away his dinner tray and went out and got a pizza and we sat in his room eating pizza and watching eposides of his favorite old TV program on a DVD I brought him. 

Casagrayson recommended the book "Final Gifts". I highly recommend this book to everyone.Since I don't have a Kindle, I was not able to download and read the book instantly. However, I did read several excerpts of the book on the Internet and a couple of interviews with the author so I got the general idea of what the book was suggesting.  One of the things I did because of this reading was to tell my brother that it was OK for him to let go.

I told him how much I appreciated his amazing fight to "beat the beast" for so many months. The extra 6 months he got allowed the family to come to terms emotionally with the diagnosis. It also allowed him to work with us to settle his affairs and now everything is taken care of which, as his executor, is a load off my mind. I thanked him again for giving us the opportunity to make as smooth a transition as possible. And I told him that he should know that we are all going to be OK in the future and he should allow himself let go when his time comes. He seemed somewhat relieved on hearing that.

I don't know if this will really be my "last visit" or not. Nobody knows, of course, when the end will come and it may just happen that I do get to see him again. But I feel very good about taking this time to have a warm, relaxed visit focused just on him and to address some of the deep topics that we wouldn't ordinarily address.  There are no loose ends or regrets about things left unsaid. Thank you all again for supporting me through this.    

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JerryfromFauq's picture
Replies 1
Last reply 3/3/2013 - 9:30pm
Replies by: Janner

There are two chat rooms!  Click the arrow in the top of the chat room space to the right of Melanoma Chat.  a drop down window gives one the options of :

Melanoma Chat

OFF TOPIC CHAT

 

It doesn't work as well as the old two chat room set up did.  If you jump from one chat room to the other your screen in the newly entered room is wipped clean.  Also the window no longer shows you who is in the other chat room like in the old days.  I have complained numerous times about the difference, but received no response from the MRF about it.

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

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Bonnie Lea's picture
Replies 10
Last reply 3/2/2013 - 11:00pm

Dear Fellow classmates:

 

Thankyou Jag for writing me.  I was unaware that the MPIP OTBB was up and running.  Last time I peeked in it was deader than a stricken tree.  However, I have been not so up lately.  Too much still going on, although I have managed to drop one of the oncologists from my herd of doctors.  Breast one, has decided if I could find a doctor who would perform yearly manual exams on my nonexcistent chest, I need not go see her....I did..... whahoo. 

I had hoped also to finish with the kidney cancer guy, as it has been over a year since my kidney surgery....but alas apparently the last two ultra sounds of the abdomen in particular the part of kidney that escaped surgery...shows changes, so one more ultra sound and blood, and urine, and chest xray will be done in August.  to see what is happening.  That appt was a let down.  Hubs and I thought yeahhhh another doc bites the floor (cant say dust cos he is a nice YOUNG guy)

I have not seen my melanoma guy in ages, and feel very very pissed (sorry John)  about that.  Since my dear dermatologist retired, the guy who took over when seeing me says  so whats you have to show me now?  Never has done a whole skin check, onlly what Bob and I point out.  So  am waiting patiently to find out from Princess Margaret crew what to do?  Two past concerns over skin issues have been a neurofibroma what ever that is.  The PMH have always cancelled my clinic appts (which are 6 months)  as doctor so and so will be unav ailaable.  I should complain to our Melanoma of Canada thingy but he is on that board!! hahah. 

I had to have another biopsy on my eye as there is tons of black goop growing inside.  It came back negative.  for what???  and then what is it???  So not only have I bloated out and look ridiculous (shape wise) but my droopy red flopping eyelid disgusts me.

This is not a pleasant chat.

I had another shunt put in in June, and promptly fell flat on my face, splitting my lip, blackening my eye, maybe displacing my jaw.  So now I walk soooo carefully I am almost like a 90 year old.    BUT we are going camping.  From that fall, I also broke two ribs last year, and even though I did not go seek medical aid, it was hell in Grundy.  I mean how fast can one jump out of bed, when startled by snuffling sounds outside?  this year will be great.  Bob had a major problem lasst spring....some of you know about it, but since he had the defibulator/pacemaker installed (eyes heavenward)  he has been ok.  But def a changed man.  Cannot do half of what he used to do.  with this snow of the other day, our neighbour did our driveway the first time, Bob came home from work, did the next round, tried to get the truck in the drivway, but got stuck in a 3 foot drift.  He and I shovelled the truck out

now that HURT hahah but call of duty and all.

 

Um DD is still married.....  John soon Jed will be walking about free style....baby proofing is just the beginning.  How are your dear King Charles?  Bill, glad to see you are still chasing the ladies, and Yoop thankyou! and everyone else.

 

Love you all

Bonnie Lea

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casagrayson's picture
Replies 2
Last reply 3/2/2013 - 10:52pm
Replies by: JerryfromFauq, Janner

My husband is the melanoma patient.  He's had two primaries on his head (one on his scalp, the other on his jawline).  Both were Stage 1.  In the past six months, he has had many precancerous lesions frozen, plus three basal cell cancers (all requiring Mohs surgery and two considered abnormal basal cell) and one squamous cell.  Last week he had three more biopsies.  We've switched dermatologists because we didn't think his previous one was very thorough in body checks, plus he wouldn't answer questions to our satisfaction.   Here's the latest issue.  Last week I pointed out a red irritated spot on my husband's neck.  I told the derm that this spot never goes away and flares up from time to time.  Not long ago it almost got the appearance of a boil, but then went away (leaving just the red mark for the derm to see).  The derm just acted like it was a little irritation and not to worry.  Well, today the "boil" is back.  Does melanoma ever present this way?  I guess I'm specifically worried about a melanoma in transit or some sort of metasticizing, especially since it is on his neck near his lymph glands.  My husband is so tired of being poked, prodded, and being worried about biopsies that I don't think I'm going to be able to convince him to go back to the doctor while the "boil" is present to have him look at it.  (He will say "the doc didn't seem concerned".  But as one who has been through years of struggling to get diagnosed with a rare disease ... Cushing's ... I know that we have to be our own advocates with these doctors.)  

Am I just working myself into a frenzy for no reason?

Strength and Courage,

Susan

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BillMFl's picture
Replies 4
Last reply 3/2/2013 - 10:29pm

Written by Jake Tapper, an ABC News journalist imbedded with troops in Afganistan, it is a gripping account of a failed , dubious and callous strategy of locating small groups of American soldiers in extremely remote and isolated bases called FOB's or Foreward Operating Bases located deep in the mountains on the borders of Afganistan/Pakistan. These bases could only be supported by helicopter and the troops were exposed to daily fire from surrounding peaks. Rockets, mortors and machine gun fire were almost a daily event.  You may have seen a young Sgt named Clinton Romesha receive the Congressional Medal of Honor a few days ago. He rallied the remaining survivors in a last ditch counter attack as the base was being over run. Its a gripping story of an indifferent high command needlessly exposing brave young men in an impossible location.

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NYKaren's picture
Replies 6
Last reply 3/2/2013 - 10:24pm

Dear Friends,
Why do a few people continually post "anonymously"? I'm not talking about a newbie, or a sensitive subject. It's not like we don't know who they are. I could say that when more than 1 anonymous posts on the same thread it gets confusing, but really, that only happened once, so who would I be kidding? Why can't "Anonymous" simply pick a name, like Matilda, or Pricilla?
A) does this bother anyone else? and
B) Janner, you have the patience of a saint.
Best to all,
karen

Don't Stop Believing

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BarbieGirl's picture
Replies 1
Last reply 3/2/2013 - 10:11pm
Replies by: JerryfromFauq

Allen Carr called to let me know some of the oldtimers were doing chat this week (and last week).  I can't get in---I just get a black screen.   Any help?

You're all prolly gone tonite since it's after 10pm EST.   Wish we could still see who was in the chat room. *sigh* 

Anyhoo, howdy, hope you all haven't missed me too much.  I know some of you haven't missed me at all!  =) 

Still raising girlies and taking care of MamaG.  She fell the 1st week in January and broke her clavicle (collarbone) on the right side.  She did a hard, fast rehab (10 days or so).  Got her home from that, and 2 days later, she was back in the hospital w/ pneumonia.  She went to a skilled nursing rehab after that, and within FOUR HOURS of being there, fell off the flippin' bed and broke her left hip!  She had surgery 2 weeks ago, and is back in skilled nursing rehab.  She's had a rough start this year.   

I'm over 12 years NED now (yippeee).  Still have a crappy back, which is getting crappier every day.  I live with it. 

If I can ever get into chat, I hope to reconnect with my old-timer buddies!  We need another bash!  Told Allen we need to take a cruise, but I've been rethinking that after the "cruise from hell" recently. 

Ya'll can find me on facebook (Lisa Garman Norvell). 

Take care!  *Hugz*

~L~

ps.. JAG---didn't know you had a baby boy now.   Congrats!   Mr. Bill---send Allen Carr your email addy, k?  He asked me if I had it.... hah! (Never did!)Bonnie, I think of you all the time.  I owe tons of people emails and can't say when (or even IF) I'll get around to answering them.  Life is busy busy busy these days, and when it's not, I'm playing auto-bingo while trying to catch up on shows on my DVR!  

Life is NOT a journey to the grave with the intention of arriving in an attractive & well-preserved body, but rather to skid in sideways, champagne in one hand, strawberries in the other, body totally used up & worn out, & screaming WOOHOOO, WHAT A RIDE!!

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