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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BarbieGirl's picture
Replies 1
Last reply 4/17/2013 - 1:36am
Replies by: CindyMillan

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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youtuy2011's picture
Replies 11
Last reply 4/13/2014 - 10:43pm

I've bought a pdf format ebook and would like to quote some sections to make a word or PPT presentation for my teaching class, buy somehow I can only copy text but not the charts and photos which are the most important things. So how can I convert the pdf ebook to word or PPT document without changing the original layouts? Can Adobe do that? Or any other software?

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BillMFl's picture
Replies 3
Last reply 3/2/2013 - 9:53pm

I mean if he was still in office we would be busy bombing Syria, Somalia, North Korea and Iran. The Defense industry would be booming, unemployment would be down and Dick Cheny might crack a smile for the first time in 20 years. We are wasting all these bullets shooting each other here at home. Wouldn't it be more fun to use them against the Axis of Evil? No I don't mean the Republican Congress, even though its tempting to include them as members of the Axis. :)  

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I mean if he was still in office we would be busy bombing Syria, Somalia, North Korea and Iran. The Defense industry would be booming, unemployment would be down and Dick Cheny might crack a smile for the first time in 20 years. We are wasting all these bullets shooting each other here at home. Wouldn't it be more fun to use them against the Axis of Evil? No I don't mean the Republican Congress, even though its tempting to include them as members of the Axis. :)  

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jag's picture
Replies 10
Last reply 2/22/2013 - 7:56am

Carole K suckered me into participating in the "all new and improved chat feature" that has has been set up w/this website.  The only problem is that some people came in and dominated the whole room and ignore the patients (reason when I first signed in under a pseudonym I found it to be completely useless).  Just a thought, rather than being a whiner, could the computer people set up "after hours" for chat with no moderator where anything goes? then earlier new patients could get the information and support they need, later on, old timers retirees, housewives and the like could chat and catch up if they so desire.  To confess I realized that I was dominating after a few minutes of catching up with people I hadn't contacted in a while and newbies who didn't feel comfortable weren't responding,  since this website is set up for support of patients, shouldn't that be a priority?

Not trying to start a fight here, will not respond if you are trying to wind this into a big debate.  Just trying to help.

Insert Generic Inspirational Motto Here

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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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POW's picture
Replies 2
Last reply 2/7/2013 - 9:33pm
Replies by: BillMFl, jag

A week or so ago I shared with you that I had finally realized that I was depressed and that depression was seriously affecting my quality of life and my abililty to earn a living. The advice and support that I received from all of you really helped me. I am now pleased to report that the depression is lifting and things are getting better. 

I think the most important change was to not only recognize that I was depressed, but to stop trying to bull my way through it. I think my initial response to the diagnosis of depression was, "Yeah. OK. I'm depressed. So what? Keep going!" That was just making things worse. And then I would get down on myself even more for my continued lack of productivitity. 

What helped was to take the depression seriously and "treat" it. I decided to make getting exercise and having fun become my top priority. Hence, I did a lot of gardening and permitted myself to take a nap after lunch without guilt (a "curative rest" you might say). I did do a few hours of work each day, but as soon as I realized that I was having to put a gun to my head to keep working, I stopped for the day. Again, NO GUILT allowed!

I started telling myself that I am sick much like my brother (the melanoma patient) is sick. Would I expect him to push and push himself to be productive while he is going through his troubles? Of course not. I would cut him some slack, wouldn't I? So I should cut myself some slack, too. 

By doing little pieces at a time, I finally finished one of the projects I was working on. The finished product has been posted to the Internet, the client is happy, and I'm feeling proud of myself. Yes, it took a few weeks longer than I expected it to, but so what? There aren't exactly ravening hordes of people demaning access to this new computer-based training course. The urgency was in my head. 

I'm cutting myself some slack in other ways, too. If I feel like cooking dinner, I do. If I don't feel like cooking we eat leftovers or get takeout. My husband is perfectly fine with that. As a consquence of this more relaxed attitude, I find myself cooking a decent dinner more often than I was. Again, the pressure and expectations were coming from inside myself. I did get myself to pay the most important bills, but the ones that were not urgent went back in the "To Do" file because I thought it would be healthier for me to take a nap at that moment. NO GUILT.

I won't consider myself "cured" of depression until I get back to my normal level of energy and productivity. I don't know how long that will take-- weeks? months? But I am certainly feeling better than I was. I am getting more accomplished than I was (albeit in little bits and pieces). And my garden is certainly looking better than it was! smiley

Thanks again to all of you who helped me with this problem!

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MarieM's picture
Replies 12
Last reply 3/2/2013 - 3:14pm
Replies by: JerryfromFauq, NYKaren, jag, BillMFl, MarieM, Anonymous, POW

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MarieM's picture
Replies 0

iframe width="640" height="360" src="http://www.youtube.com/embed/BaQdwTsVtCY?feature=player_embedded" frameborder="0" allowfullscreen></iframe> 

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MarieM's picture
Replies 0

iframe width="640" height="360" src="http://www.youtube.com/embed/BaQdwTsVtCY?feature=player_embedded" frameborder="0" allowfullscreen></iframe> 

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bioguy's picture
Replies 1
Last reply 2/5/2013 - 10:34am
Replies by: kbc123

Hi All.  I'm new to the site.  I'm a 40 y/o white male with fair skin.  I saw my primary care doc for a lesions on my chest.  It's certainly atypical for melanoma presentation, but it has enlarged over the past 18 months, and started to appear dry and bleed in spots.  It appears like a slightly raised, reddish, mole-like.  I didn't pay it much attention at first, but after my primary care suggested a see a dermatologist for a biopsy, I'm really nervous.  I didn't sleep at all last night, so on top of the anxiety, I'm exhausted. 

Any advice from you guys?  I've always thought that by the time the mole/lesion is bleeding that it's quite advanced and there's not much that can be done.  Any help you all can give would be so greatly appreciated. 

 

Thanks so much. 

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I'm having mine today. Did you have yours recently? Soon? Don't forget!

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BillMFl's picture
Replies 8
Last reply 2/11/2013 - 8:41am
Replies by: Bonnie Lea, Janner, BillMFl, POW

I'm having mine today. Did you have yours recently? Soon? Don't forget!

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