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 8
Last reply 8/3/2010 - 6:08am
Replies by: Kimmer, dian in spokane, Jocelyn, Nad T, Carver, Anonymous

A little heavy on the pastels. 

I wasn't having much of a weekend, but everything is ok now that I have the info on Chelsea's wedding dress.

I registered!

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bcl's picture
Replies 7
Last reply 8/3/2010 - 4:01am
Replies by: bcl, Janner, Carver

sure they let us know how many people are reading. But for a severely ill patient it could be agony to post and see 20- 30 -40  viewers and not hear a peep.  In the past I've seen posts about bleeding mets sit around for a long time..   seeing readers and no replies might add to the feeling of helplessness.  

 

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Anonymous's picture
Replies 3
Last reply 8/2/2010 - 6:22pm
Replies by: Anonymous, Jocelyn, Janner

I have noticed that each time I open the page, the threads show that the replies are new ( highlighted) but they're not new-they're the same replies I've already read. Why bother having this if it's not functioning.  So far, the only new function that seems to have added to the use of the board is the e-mail notice. Seems to have added multiple layers to get through the board. 

 

Perhaps it's a problem with my computer, but I can't seem to click through to view the profiles from the individual posts ( opened). There is a lag time that has me clicking and clicking-sometimes it opens, sometimes it doesn't.

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jag's picture
Replies 10
Last reply 8/2/2010 - 8:27am
Replies by: Kimmer, Anonymous, Nad T, bcl, Carver, jag

 If you see a post by somebody you don't like, you can push it off of the page, by responding to all of the posts around it, then it will just disappear.  Doesn't work if that person is in another thread.  

Insert Generic Inspirational Motto Here

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Anonymous's picture
Replies 7
Last reply 8/1/2010 - 2:57pm
Replies by: DonW, Anonymous, Carver
Kimmer's picture
Replies 1
Last reply 8/1/2010 - 10:49am
Replies by: Carver

Hi Everyone,

I grumble about doing the P90X workouts all the time, but in reality I do love 'em.  This article came from one of the newsletters and the blog that Tony Horton, the workout guru and instructor in the videos, sent out.  It really got me thinking, so I just wanted to share.  Not sure I can actually put it to practice, but I have often wished that I had all of the time back that I have spent stressing and sweating the small stuff....

Take good care, K.

STRESS

Do you realize that if you took the fear and anxiety out of every "stressful" situation in life, the end result of that situation would greatly improve? You can panic and freak out all you want, but time will still pass and life will happen, whether you stress out about it or not. So why not choose patience or curiosity? Patience is a virtue, and who wouldn't want to be virtuous in a stressful situation? To be curious means asking the right questions to help find solutions. When does fear, worry, or anxiety ever help a situation? Stress occurs when we are incapable of moving through a situation logically, peacefully, positively, productively, and gracefully. It take a lot of energy to be stressed out. Allowing stress to overtake you means you're having a tough time dealing with reality. Don't let stress get your goat. Stand up, take a deep breath, and see if you can deal with reality under pressure. I like the parable about the 10 people standing in line at a bank. Three robbers come storming in—screaming, yelling, and waving guns around. They terrorize the place and steal everyone's jewelry and money. What's the moral of the story? Ten people experiencing the same event will have very different reactions to it. Some will never recover, while others will have a crazy story to tell at cocktail parties. How do you respond to the events in your life?

I like Byron Katie's 3 Kinds of Business Theory:

  1. God's Business. The things that happen in this world that are out of my control.

  2. Their Business. The choices other people make based on their life experiences so far.

  3. My Business. The choices I make that shape my life.

Don't waste your time on gossip, ridicule, envy, self-pity, anger, guilt, arrogance, impatience, regret, manipulation, jealousy, fear, worry, and anxiety. It's too stressful, and it destroys the energy you need to stay healthy and fit. If you choose understanding, truth, clarity, patience, devotion, gratitude, acceptance, wisdom, and forgiveness, you will have peace of mind and all the energy in the world to do whatever you want.

from Tony Horton's Blog

And remember, no matter where you go, there you are. Confucius

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Yawn's picture
Replies 21
Last reply 8/1/2010 - 12:01am
Replies by: Nad T, Jerry from Cape Cod, Anonymous, Carver, jag, Yawn, Fountainhead

n/t

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TinaR's picture
Replies 21
Last reply 7/31/2010 - 7:14pm
Replies by: bcl, jag, TinaR, Anonymous
 
 
I can't handle these changes in  my life...I come to the board and it's like operating inside a kaleidoscope.  I feel so shrieky, nasty and awful about this...I will stop until I can control myself.

 

 

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bcl's picture
Replies 2
Last reply 7/31/2010 - 7:03pm
Replies by: bcl, Carver

 

I loved this feature of the old board; it added clarity on the main board and humour OTB
Questions (related or otherwise) are often asked within a thread by patients, these can be overlooked if not for others changing the subject line to draw attention to the post. One thread could efficiently accommodate multiple concerns.
 It seems to me this was not a frivolous feature, but one that enhanced communication -a worthy goal on a cancer board.

 (Posting this here to avoid crowding the main board, but I see it primarily as a main board concern.)

 

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Kimmer's picture
Replies 2
Last reply 7/31/2010 - 8:59am
Replies by: Kimmer, jag

Hey John,

I just read your profile.  I really didn't know that you have been through much.  Sure glad you are here!

My son recently took a bad fall at work and has suffered his second subdural hematoma.  Luckly this time did not require surgery, but his brain injury is more severe; cumualtive damage to left frontal lobe.  We are happily getting him back up to speed without so much thrapy this time and it looks like he will be able to return to his normal life. 

He was originally give Dilantin for the first head trauma.  That was 10 years ago for the subdural hematoma which was evacuated; craniotomy, coma, whole 9 yards; he took the Dilantin with no ill effects for 4 years and was given the green light to discontinue it..  His latest anti-seizure med was Keppra.  He kind of languished for 8 days making no real progress cognitively even though the CT scans showed that the trauma was resolving.  No EEG or MRI was ordered.  I asked for them to put him on Dilantin from the beginning because I knew that he had no problems with it before, but what do I know?  They liked Keppra better, no blood serum levels to check, less bad for the liver, etc.

At day 9 after the injury, he became very disoriented, could not follow simple commands, and was speaking gibberish (aphasia).  It was horrible.  Neurosurgery had been following his case and they were wringing their hands, psychiatry requested an EEG, neurosurgery said NOPE, so Psychiatry called in Neurology who said that he was having non-convulsive seizures and ordered an EEG.  The EEG confirmed this and low and behold he was given IV Dilantin and a bunch of  IV B vitamins (Rally Pack).  He was coherent but sleepy in 4 hours. 

Either he is in the 1% of people who have severe adverse reactions to Keppra or it did not control the seizure activity.  (I still question why an EEG wasn't done as soon as possible.)  I noticed in your PatNet that your seizures became worse on Keppra.  Are you still taking it?  Do you have any 'insider info' about the medication.  The folks at the hospital were a little mute about it...I guess I had pitched a bit of a fit early on about the Dilantin.

I would appreciate opinions or findings on this medication.

Many thanks, K.

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Bonnie Lea's picture
Replies 1
Last reply 7/30/2010 - 5:38pm
Replies by: Kimmer

so my brain is working but mayhap too much.  I only want to show one pic-a-chure not the whole thing.... (only six) but still)  I shall try again another time.  Don't worry I won't drive you all totally insane, but I am like a bear with a sore backside or a mean dog (is there such a thing?) with a bone to gnaw on.

Just Keep on Hanging In

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Bonnie Lea's picture
Replies 1
Last reply 7/30/2010 - 5:33pm
Replies by: Kimmer
Just Keep on Hanging In

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KyCyn's picture
Replies 2
Last reply 7/30/2010 - 5:23pm
Replies by: StanN, Kimmer

Every single time I log in, it doesn't recognize my password.  Every. Single. Time.

So I hit 'forgot password,' I get sent a link to create a new one, I put the password in, put the code in, hit SAVE, and we're good to go.

Until I log out and try to come back again.

Could this have anything to do with 'cookies?'  (and don't laugh if that's a ignorant question, or at least laugh quietly!).

The reason I think that is because I believe the 'cookie' disable thingy is on my work computer...

 

Cyn

 

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Anonymous's picture
Anonymous
Replies 1
Last reply 7/30/2010 - 4:19pm
Replies by: Bonnie Lea

Dancing skeleton puppet

http://www.youtube.com/watch?v=1WpD7i4RxnY

 

 

And remember, no matter where you go, there you are. Confucius

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jag's picture
Replies 2
Last reply 7/30/2010 - 3:59pm
Replies by: Bonnie Lea, Yawn

 Sorry, somebody had to do it.

John   

Warm fuzzys, hearts and smiley faces to everyone.  The new board is like heaven. 

Insert Generic Inspirational Motto Here

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