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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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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silvia1990's picture
Replies 6
Last reply 2/21/2013 - 9:04am
Replies by: jimmylucas, Jenifous89, youtuy, Anonymous, Charlesk111

 

So here's the thing, I accidently spilled water on my iphone 4, although it has been fixed, it still get kind of "unstable", sometimes it just suddenly shut itself down.
Since iphone 5 is coming soon, I think I'll wait till then to get a new one.However, I have a pile of important contacts saved on my watered iphone 4 and I'm so afraid that they'll be gone with the damaged phone right before I could get a new one. But if I can copy these contacts to itunes, then next time I'll be able to transfer them to the new iphone,right? Or just copy to computer? Any difference?
Anyway, I just want the contacts to be backuped, any good idea? I use Dell PC with Win 7 system.I don't mind if I have to pay for a tool but it would be the best if there's a free and easy way.Help me please!!

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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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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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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 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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yoop's picture
Replies 7
Last reply 2/7/2013 - 8:45am
Replies by: MarieM, yoop, MeNDave, KyCyn, jag

Per Bill I will throw out a couple rants.
1st Rant: A stalker is stalking a friend of mine.
So.... My friend has taken out a PPO out on this guy, had the cops come over numerous times, they even went to talk to him and told him to lay off the stalking. Does stalker care? Nope. He continues to leave: dog poop; fire starter kits; matches; cans; coins; brake fluid; or anything else in his car that he can throw out. Police can't arrest the guy without proof so she needs a surveillance camera to catch him. OK, how F'ed up is this?
You can't rant without a solution so how about this one:? Shouldn't there be a Stalker Clunking business where you pay them... Say $300 and a guy goes over to stalker dude and clunks him on the head with a 2x4 then says if he stalks some more, more clunkings? And then, he gets chipped... (Like you put in your dog in case it runs away), this way stalker guy/gal can be tracked.
Now, you might say this is unconstitutional and the stalker has rights. True, however, look at the rights the stalker guy is taking away. (My friend is in constant fear, because the guy is a wack job)
Lets say stalker guy gets clunked and finally decides to stop spending his time in this wacko behavior. He now has extra time to possibly become a use to society, stalkee person then doesn't have to live in constant fear and can also use her time better. Win Win.

2nd Rant: Tenant gives me ulcers.
So... I had this renter who was late on her rent every month. (In her mind she wasn't late because she gave me a check), however, her check was never good so I would go to the bank with check and try to cash it. If I just deposited it and it bounced (happened over and over to me) I got dinged. I then wise'd up and would have the cashier see if the money was in her account, if it was, I cashed it, then deposited it.
Finally, she moved out and squared up on what she owed me. I go to the bank and was surprised that the check cleared so I cashed it then deposited it. Life is good, bad renter lady is now not causing me grief, etc. etc.
Today I get a letter from my bank with the check from renter saying insufficient funds., and they deduct the money from my acct. Big F'ing F F F F F F F.
Other than these rants, life is grand.

Yoop

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BillMFl's picture
Replies 1
Last reply 2/7/2013 - 8:36am
Replies by: MarieM

This Off Topic BB used to be very very active. It was a combination of patients, caregivers and family members. And it was an anything goes outlet for all of us. We fought, we laughed and often became very close.  It linked people from all over the US and other countries as well.  It became a great place to blow off steam, laugh, curse or cry.  It also got abused by some and that eventually drove away a lot of people.  Perhaps some of you should grasp the opportunity and use this almost empty board to vent and share about things you don't feel comfortable talking about on the main board.  Its here for the taking. Make it yours!

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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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POW's picture
Replies 18
Last reply 2/1/2013 - 8:14pm
Replies by: jag, yoop, POW, BillMFl, Janner, Nancylee

The human psyche is really weird, isn't it? 

My brother in Florida has been a hospice in-patient for almost 2 weeks now. His neurological symptoms have been eased by dexamethazone and he is not in pain. The hospice is a very good one-- the nurses are kind and attentive and my brother is doing pretty well and receiving a lot of visitors.

I returned from Florida to Atlanta 3 weeks ago (just before he entered hospice) and I have been dead in the water ever since. I have been a freelancer for 10 years and suddenly I find myself unable to do any work. I just can't seem to concentrate and I end up taking naps all the time (as a freelancer, I have never allowed myself to take naps!). I don't feel like grocery shopping or cooking so we've been eating a lot of take-out. I just seem to diddle around all day and/or get unreasonably, obsessively angry if some medical person does not return my phone call by the end of the day. At this point, my clients are starting to get restive about my projects. I resolve every morning to sit myself down and do some work -- at least a couple of hours-- but somehow it doesn't happen. 

So I finally went to a caregiver/grief counselor yesterday and asked, "What the heck is wrong with me?! My brother is getting the best care he can get at this time, there are no medical dragons I need to slay any more. Why can't I get my life back on track?" She said I was depressed. Depressed?! Me?! Who'd a thunk?

I suspect that you will say, "Of course you're depressed. Under the circumstances, who wouldn't be?" But I have been depressed once or twice before in my life and it didn't feel this way. Also, I have known intellectually for several months that my brother would probably not survive this illness. I have accepted that fact intellectually. So I shouldn't be depressed about it, right? Wrong.

After talking with the therapist, I now understand that the emotional half of my brain has absolutely NOT accepted what's going on. I need to cry more. I need to paint more. I need to be gentle with myself and stop criticizing myself for my preceived "laziness". But I also need to take little baby steps to try to get my life back on track. Don't try to shop for a week's groceries, just try to get something for dinner tonight. Don't try to make up for lost time on my work projects, but do one little piece of one project each day. Do something physical each day like going for a walk or working in my garden (mild weather is one of the joys of living in Atlanta). Send my brother a funny greeting card a couple of times a week instead of worrying about him all the time.

So I guess my advice to the rest of you caregivers is to not be tricked by the analytical/intellectual part of your brain. ASSUME you are depressed, even if it doesn't seem that way. And think about what steps you can take to be kind to yourself and to deal with your depression. Allow yourself to cry. Allow yourself to rage. And allow yourself to rediscover some pleasures in life. This is a rough road we are walking-- ignoring or denying that fact will just make things worse. 

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Swanee's picture
Replies 1
Last reply 1/31/2013 - 11:46pm
Replies by: Swanee

Today I made the discovery of this BB and from what I gather, it is an informal place to come and say whatever you wish and sharing one's feelings, whatever they may be!   I am going through and reading old posts and trying to get a feel for how everyone was using this BB and the type of topics they would talk about.  Apparently, most users have dropped off and it is not being utilized quite like it use to!  I discovered a post from dian in spokane from last year at this time and she was wishing Charlie a happy birthday.   I love Charlie's posts and his to the point answers, he always makes sense to me and has helped me out of my own confusion many times, since being diagnosed 3 years ago with stage IV.   I see from other posters, he is well loved, respected and is a bit of a icon on mpip!

I think my husband shares the same birthday and I would just like to know if that is true.....so I can additionally raise a glass to Charlie too!

Cheers Charlie!

 

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POW's picture
Replies 11
Last reply 1/31/2013 - 12:12pm
Replies by: POW, Colleen66, sjl, jcmp, BillMFl, Phil S

 

Last week my brother was taken to the ER with severe speech aphasia, mental confusion, and an inability to walk. His brain tumors were back big time and there was nothing more the doctors could do. So they put him on dexamethazone to relieve the brain swelling and sent him to hospice. We were told to expect 1-2 weeks. However.... the dex has relieved his symptoms considerably. He is awake and alert and keeps wanting to get out of bed alone (his walking is still very unstable so that is a fall hazard). He can talk again and walk (with assistance). He is eating well, and is happy to receive visitors in his hospice room. Amazing!! He is an incredible fighter!!

He is now considered too healthy for hospice and they want to move him out, which puts the family in a bind. He wants to go home, of course, but he still needs continuous nursing care and our family can't afford a 24/7 private duty nurse. We are now trying to find a local nursing home, but so far there are no open beds. And while the dex has relieved his symptoms, he is not getting any cancer treatments so this reprieve is temporary. How long will it be before he has to go back to hospice? A few weeks? A few months? Nobody knows.

Two weeks ago my brother and our whole family were excited and optimistic because he finally started ipi treatments. Maybe--just maybe-- ipi would work for him. Last week we were in despair because he collapsed and his prognosis was dire. Now we're happy that he is so  much better, but also feeling guilty because he badly wants to go home but we can't afford the skilled nursing care he needs. On the other hand, hospice is not a good place for him medically because the complexity of his case is outside of their experience. They specialize in pain management and emotional support; they are not used to handling patients as active as my brother and don't know how to titrate his dexamethazone, for example. So this causes the family concern, too. 

When all this started 6 months ago, I expected a long, slow decline that would eventually end in a quiet and hopefully peaceful passing. I never expected all of these physical and emotional ups and downs. I never anticipated that my brother would not ask anyone for help (like asking his friends for a ride when he couldn't drive) or that he would refuse any outside help that was offered (like at-home hospice offering him a home health aide). That left the ball squarely in my court, which I didn't expect. I didn't appreciate the constant emotional tightrope we have to walk between maintaining a positive mental attitude to encourage his recovery while simultaneously being realistic about his prognosis.  Every time he suffers another medical crisis, I have to ask myself, "Do I take another medical leave from work so I can be there "at the end", or do I hang tough and see if he bounces back once again?" That is an awful dilemma to have to face time and again. 

I suspect that everybody who is dealing with any type of terminal cancer, especially melanoma, goes through these same things. I just wish I had been better prepared for the mental, emotional, and financial upheavals we're going through. Unfortunately, most of the people on the MPIP forum don't want to hear any bad news. They want upbeat, optimistic reports, for which I don't blame them. They also are not all that interested in the caregivers' perspective-- if you aren't walking the walk don't talk the talk. And I understand that, too. And I know that no matter how confused and exhausted I feel, my brother has it much worse. But, oh, what a difficult road this is to travel for those of us who love and care for the patients!!

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