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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DonW's picture
Replies 9
Last reply 3/8/2012 - 5:17am

It hasn't been working for months. I used the contact form on here to report it, but didn't seem to get any response. With Facebook and all it seems that not many are interested in chatting, but I would still go in there once in a while if it was working and I think sometimes new patients like to chat.

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BillMFl's picture
Replies 9
Last reply 2/1/2012 - 3:25pm

Had both a Moh's procedure and plastic surgery for a very sneaky bcc this week.  The dam thing never presented on the surface. No bump, nada. But it went pretty dam deep. The only smptom was a small grayish spot that I almost forgot to point out to my Derm. She hadn't noticed during my exam.  biopsy revealed a nodular bcc with roots extending in at least three directions. Off to a Derm surgical specialist who teams with a plastic doc for the reconstruction. What a mangled mess. Wife says my nose was too big anyhow. I'll get even later. Meanwhile I only sneak out of the house after dark. Don't want to scare the neighbor kids . Just glad I'm too old to care much anymore. Might have to grow a moustache and comb it up. :)

 

PS: After it heals Pat says I might be mistaken for Owen Wilson. If I buy a blond wig. Do younger women like Owen?

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BonnieLea's picture
Replies 7
Last reply 2/14/2012 - 9:21pm

and I sneaked down to the kitchen to use the computer.  my IPOD just cant cut the mustard.  Years ago sonny boy sent me a birthday card from Scabs the Clown  and I have never let him forget it.    However, I seem to have taken on the likeness of said clown.   EWWWW

 

the issues that Carole mentioned are prob usual for some post op patients.  NOT ME   new-moan-yeah,  bladder infection, (evil cathater) and tissue breakdown due to that allergy that so many of us (Jan in particular suffer from)  Jan I thought of horse tape but did not quite know how to tell the nursies about go to a tack shop hahha.  and thus three bad infections.  and am being treated with antibiotics.  they do work well.   Now I am suppose to have the staples out.  (Bob counted....31)  tomorrow and I feel like I should chug a shot of something, but nah  I am over that. (till I feel 100%)

yoop,yawn,Dan T. Jag, Linda, everyone, thankyou for keeping me in your thoughts.  Pathology I am looking forward to.... screaming  clear margins.  I am left with a goodly chunk of my kidney as he was able to remove the tumor and edges thus saving more kidney.  It seemed harder, due to the scarring from the two biopsy thingys I had.  OH WELL.

SOOOOON comes  Grundy Camping.  (that is my story) 

Love you all

Bonnie Leakiss

Hang in There

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I chatted with Bonnie a bit this morning on Facebook.   She wanted me to send her regards to her friends on MPIP.  I know I have been wondering how she was, if she was home.

She is home,    Sounds like she is dealing with some extra recovery issues, and says " but soooo tired it has been way too rough harder than anything else as far as \i am concerned. still confined to my bedroom"

Pathology is not back, but she hopes to return to be the "babble queen" soon---and so do we!   I told her of the msgs here on OTBB and she was hoping to navigate her way to them.    It made my day to chat with her!!

CarolA. 

CarolA

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dutchhook's picture
Replies 1
Last reply 2/17/2012 - 1:19pm
Replies by: scots

If you or your loved one is in the midst of fighting this evil disease, I don't think you would want to read this book, BUT if the unthinkable happens and you want to hear a true story, one that is heartwrenching at first, then full of hope and love the second half, then I'd want you to keep this book on the shelf.

When you click on the link, there is a short 3 minute youtube video from the couples who went through cancer and lost their loved ones, and the wonder of how they put their lives back together. It honestly OPENED my heart to new possibilities, something I wasn't sure was going to happen ever again.

Bless you,

Steve

Link to the short article and youtube video here: http://hoogenakker.net/?p=534

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Replies by: dutchhook, lhaley

 

Ok, we might have been just like you. For us, after fighting melanoma for 4 years and beating the damn thing back time after time, our opinion of hospice was "I'm giving up". There was no way my gentle wife, fighting this like a real S.O.B., was going to give up, not one ounce, period.

So, when we had a turn for the worst, and she was really unable to communicate with me or her family, I had to make the call for her, a call that would determine the life of my Teri and affect the lives of the 1000 or so people she knew or was on her caringbridge site.

I have to remember that when Teri was pregnant with Gerrit, at about 35, they wanted to do all these tests for downs, spinobiffida and a host of other potential problems so they could abort if necessary. Teri wouldn't do the tests. When I asked why, she said that however the baby turned, out, even in bad shape, it was destined by God and it was our burden to bear. So, why do the examinations, she said, we are having this baby!
Ok, I don't remember for sure, but I'm sure me, the doctor and the nurse were all getting "The Look" from my wife. Now I'm scared to death of "The Look" and wouldn't cross it for anything, but the doctor and the nurse got the message too. No tests, by God, we will make whatever is coming work.

So I had to make the call to go to hospice. It felt surreal. I didn't understand what it was, but there was really no way for anyone to explain. My wife completed her life after just 2 days of hospice, mostly unconscious. Her family is from a small town 250 miles away, but we took over the hospice which had just 6 patient rooms. There must have been 30 or 40 of us there that first day. They found beds, sleeping bags, carpet, whatever. There was food there for everyone, but as an italian family, We spent hundreds on food for everyone, staff too. We made meals in the kitchen for us and for the staff, and we loved my wife every single minute she was there. Let me repeat that. We LOVED MY WIFE EVERY SINGLE MINUTE SHE WAS THERE, EVERY... SINGLE... MINUTE! Ok, tears starting now, she got nothing but love those last two days, me, her best friend, (well I was her best friend too), her parents, her kids. None of this would've been possible in the hospital, as brave and as wonderful as they were.
The poking, measuring, and every other intrusion was no longer inbetween her and her family.
When we got to the hospice, I was taken to a private room where a nice person explained the procedure and had me sign a no resuscitate statement and a no care or something like that statement. How do you sign something like that when you remember your wife protecting her unborn baby against even the notion of giving up?

I slept next to her that night, on a cot, holding her hand most of the night. Talking to her, caressing her, praying. The nurses coming in a couple of times to administer medicine under her tongue. I'll never forget Mary Carol rubbing Teri's hand saying, It's ok to go Baby, we'll be ok, It's ok to go, you left us in good hands, go, rest, peace..Let go, we will love you forever

I had been with her alomst 51 straight hours, but decided to drive 25 minutes home to shower and grab her things. I just walked in, when I got the call from Jon that she had passed away. Racing back to the hospice, I collapsed on her when I saw her. The people at the hospice said this happens all the time. The spouse leaves and the patient is waiting to save the spouse the experience of their last breaths on Earth. Even today, 9 weeks later, I was grateful I wasn't there for those last few minutes. If anybody tries to tell me what happened the last few minutes, I would vigorously shake my head and say NO, I don't want to know. It's bad enough I have to remember her the last week or so, at least give me the fantasy that she died peacefully with a smile on her face.

So, what do you need to know about hospice? The one question that haunts me today is what was happening to my baby? When her breathing was difficult and she was taking double breaths, what was happening, when her body was burning up what was she feeling?, When she was groaning and waving her arm at me, what the hell was she experiencing? Could she hear us, were we there for her or just for us.

Since her passing, I have slept with her urn, I have laid on the floor where she fell, crying, Teri saying she didn't want to go back to the hospital, I can get up, I can get up. Damnit, she had a friggin broken hip. The doctors couldn't even believe we were able to get her onto her walker.
I have that area in our bedroom laid out(in my mind) like a chalk mark from NCIS. I lay as she did, asking her to forgive anything I ever did.

In my case at least, she hasn't been back to visit me. She hasn't said anything to me and the best way I can explain it is that I am in a dark tunnel opening up into a large underground cavern with no light. There is light at the tunnels entrance from where I came. I yell into the cavern, "Teri, are you there baby?"  but not only do I not hear anything, but the creepy thing is there is no echo, the silence deafening, the silence absolute. It's like the darkness swallows everything.
So, what do you need to know about hopsice? It can be the best healing decision you can make as a caregiver for your distressed loved one or your surviving loved ones. It was for us the most positive experience of the last few weeks.

Spend the last few hours/days together, talk, express, cuddle, caress, because when the time comes, the cavern can be cold, dark and worst of all, in my case silent.....

<strong>Of course, it could be that Teri is giving me "The Look" AND "The Silent Treatment". If I knew she was doing just that <em>I"d be the happiest man on Earth!</</em>strong>

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Replies by: Barbaras Husband

Melanoma.org really helped us when we were going through Melanoma, our way of saying thanks, please share our blog link or this story link with anyone in need of a cry or a laugh or both!

Fallin’ is a many splendored thing.

I still remember the first time I saw Teri. She was in a room that spanned the mens/women’s dorms. She was sitting on the window sill with her feet on the heat register. In what is an impossible coincidence, the picture that Debbie sent with me jumping? I believe the window to the left of me in the pic was exactly where she was sitting at that first encounter.

As soon as I saw her, I said to myself, I’m going to get to know her.

Fallin’ in Love at First Sight?

I don’t remember ever feeling that way before or after, well except for Charlize Theron as Keanu Reaves wife in “The Devils Advocate”, that could’ve been Love at First Sight too, but good thing I didn’t start dating Charlize because later she did Monster, where she played a serial killer (Shudder) and I became a nobody. Those Hollywood marriages never pan out anyway.

There was no way to know that our next chance meeting would happen because someone pulled the fire alarm, and everybody went to the student community center or some other room that sounds like a communist utopia, where JoAnne and Teri saw me eating Peanut M and M’s and drinking grape pop and thought it looked like a great combination. I was thinking Teri and I looked like a great combination. The only other combination that was better? That was when somebody stuck their chocolate bar in somebody’s peanut butter or the other way around, the debate rages on.

The odds were against us from the beginning. I hated school, was terrible at studying and moved back to the cities. Teri stayed in Duluth, but we hung in there. Fall in love we did. Fell head over heels.

Then we just got through the 3 stages of marital bliss.

Teri did wonderful things for me every day for years, but there are three things I did for her that equaled everything she did.(yeah, right)
The first stage, 15 years ago, where I got the guys operation You know, the one where you find a new purpose for 13 bags of frozen peas? I could always crack Teri up with this one, because as I was laying there, I smelled something burning, then looked up and realized it was me!

Then the next stage of marital bliss, the 10 years since I’ve had to go to the store to buy anything labeled “Supers” or “For Heavy Days”.

Finally, the last stage, the last two years where I didn’t have to go to the store to figure out what saline solution to buy or other gross eyeball things that I don’t want to think about.

And by the way, what’s up with cotton balls anyway? I can’t remember ever using cotton balls. They’ve always been here, there’s still a bag, but unless I feel like coloring the Easter Bunny for my grocery stores contest and need a puffy ball for a tail, I think they may go bad.

Then about the same time, 2 years ago, came an all new meaning for the phrase “terrorist cells”. You might be thinking of 9/11, but these terrorist cancer cells went rogue on Teri’s leg. They decided to wear masks, make videos, run through obstacle courses and make a weapon of mass destruction. Then exploding said weapon, with the blast radius of about 1600 miles, hurting all kinds of innocent people.

I wish I could have negotiated with these terrorist cells of cancer. I would say, C’mon guys, you realize if you succeed, you’ll just kill yourself? But NOOOOO, they had to do it their way.

It looks like a very long 20 years ahead for me. But there are a couple of bright spots.
They say that 50% of marriages end in divorce. Hmmmmmm that means the other 50% end in death!

Why is that a bright spot? Well when it comes to Fallin’ I got the chance to Fall in Love, and a blessing in the wake of tragedy, an amazing twist, I never had to fall out of love.

 

 

http://hoogenakker.net/?p=494

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This blog is done in a lighter hearted fashion. Certainly there has been enough pain, lets talk together and make life wonderful again (when we're ready!)

This blog has helped others who suffered loss, especially from Melanoma, please share the blog link below to anyone who needs support.

You’re probably saying, there’s no way someone can link pregnancy with mangos and bananas. When you’ve been a caregiver for awhile, a single parent and a survivor, you can do damn near anything, so here goes, you can tell me if I pulled it off or not!

When women are pregnant, they “know” at least in real life. On TV, there’s the show “I had a Baby and didn’t know I was pregnant on the Womens network, or in movies, there’s the beautiful single person, throwing up at 9 am at work and the best friend, interrogating her with the know it all look of “YOU ARE PREGNANT, AREN’T YOU?” The heroine of the story usually denying the obvious.

Well, in a way, I’m pregnant too. I feel myself changing every day. I “feel” a change in a thousand different ways. When I walked out of the hospital, knowing Teri was going into the hospice, I remember feeling like I was floating outside of my body and felt changed. When she passed and I was speeding back to the hospice, I felt changed. Everything is different, the tv, my sleep is bad, my knees feel weak every once in awhile,(aren’t I supposed to cause that, not get it, what a wimp!) and my work production is inferior in every way My time at home is different, even driving is different. This must be the same for pregnant women, once they know too. Just like I asked Teri how she felt when she was pregnant, there was no way she could tell me what she was feeling. My personality is changing, and I can’t tell if it’s for good or ill.

I’m going to my first widowers group tomorrow night, excuse my poor attempt at humor, but what would the twelve steps of a widowers group look like
Steps 1-11 Please don’t die, I love you more than life itself. please PLEASE don’t go away honey
Step 12 – Oh (*&^@
I mean there’s only so much the volunteers can do after a loss. I needed the miracle two months ago, but as survivors, we’ll take any miracles we can get these days, so THANK YOU to the volunteers who manage these groups, but we tend to have a sick (or practical) sense of humor.

I feel sorry for people who come up to me to ask how I’m doing. I think widow(er)s should be rated like fruit. Green, ripe, or bruised all to hell, stay away. I should put a sandwich board with my ripeness rating so people know what they’re getting into, can avoid my eyes, or cross to the other side of the sidewalk!
Even tonight, it changed dramatically. I was at the store, everything ok, then I came home, talked to Paul and he said that Teri was making mistakes as early as August 15th. My God, tears starting, I thought she only got bad after the leg surgery September 23rd, how could a loving husband not see the distress? Absolutely Unforgiveable.

So, back to pregnancy. I feel like that pregnant woman, knowing my body, mind and soul are changing every day, sometimes every minute. I can’t explain the changes and I don’t know if they are good or bad, but like a pregnancy, I’m just along for the ride. On the plus side, (ha ha – that’s a womens clothing joke) I’d like to announce that now that I’ve announced I’m pregnant, I’d like to say that my bulging waistline has really been a cute baby bump since 1985, way before it was fashionable!

As for warning you, my friends, some days I feel like a green banana, sour and hard, other days, ripe, sweet and oh so good, and nights like tonight, bruised and beat to heck with the new knowledge that I might have missed some of Teri’s distress.

Where does the Mango fit in? Well, a banana shows it’s bruises pretty quickly. You get advanced notice of what you’re getting. THat tricky Mango? One can be solid green and soft, and another can be beautiful orange and hard and there’s just this tiny time frame of when that Mango gives 3/16″ of an inch when it’s perfect. So when you come upon a widow(er), like a mango, you won’t be able to tell if they are going to be hard and tasteless, or turn to mush like an overripe mango, but know this.
It turns out that me dumping on you, my friends, is good for my mental health, even though it scars you for life. It’s all about me! If my mental health improves, my psychiatrist will be looking for more patients, and those I’ve depressed can get an 8% discount!
I think I’m kind of over most of the bruising (in public), but if I squish, sorry, I’m pregnant, but I don’t know if I’m a mango or a banana.

http://hoogenakker.net/?p=403

Share this with those in need,

Thanks and God Bless - Steve

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Replies by: Sherron

I didn't write it, but I love it.

More thoughts on my Melanoma fighter wife, Teri on our personal blog. She passed away 11/08/2011

Many people have found this blog helpful to people experiencing loss from melanoma

 

I am standing on the sea shore

Teri is sleeping comfortably at the hospice house. It is beautiful, just like her, it’s where she belongs.

I am standing on the sea shore. A ship at my side spreads her white sails to the morning breeze and starts for the blue ocean. She is an object of beauty and strength. I stand and watch her until at length she hangs like a speck of white cloud just where the sea and sky come to mingle with each other.
Then someone at my side says “There, she is gone!”

“Gone Where?”

Gone from my sight. That is all. She is just as large in mast and hull and spar as she was when she left my side and she is just as able to bear the load of living freight to her destined port.

Her diminished size is in me, not in her. And just at the moment when someone at my side says: “There, she is gone!” There are other eyes watching her coming and other voices ready to take up the glad shout: “Here she Comes!”

— Henry Van Dyke

 

More grieving posts on http://hoogenakker.net

http://hoogenakker.net/?p=323

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Janner's picture
Replies 6
Last reply 1/25/2012 - 7:07pm

Kidney tumor and surrounding tissue removed.  The doctor said the surgery went well.  I'm sure she'll post her own update when she feels up to it.

Janner

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jag's picture
Replies 3
Last reply 1/15/2012 - 8:23pm
Replies by: jag, BillMFl, BonnieLea

Or have a lot of people stopped mailing Christmas cards this year?

We were too busy/tired w/the new business,new truck, patients, and prenatal junk, to even get any out.  Kind of makes me feel good that we didn't get a lot.  Plenty from clients, Nice packages for re-gifting too. How many people actually still tip the postman for Christmas anymore?  I feel sorry for those poor chumps tromping around in all kinds of weather, getting chased by dogs, crapped on by pigeons, losing arms when they are rear ended while carefully placing peoples mail in their boxes and some idiot isn't paying attention, or their little white trucks aren't visible.  The old post office uniforms are looking tired and worn too.    

Now I feel kind of guilty for not sending cards out, I almost couldn't look the old guy in his mail truck in the eye, when I asked him if he could bring my package to UPS for me, since it was on his route....

Insert Generic Inspirational Motto Here

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BonnieLea's picture
Replies 3
Last reply 1/17/2012 - 9:13pm
Replies by: Yawn, BonnieLea, jag

Welladay.... it is January 12, 2012.  Here in Bonnie Land it is raining and FOGGY...yes I said foggy.  So much for the "true north strong and free" land of snow, igloos, and snowblowers.  Unreal. 

Nice to know that loads of babies will be born.  New Vet Babie on MPIP OT BB,  and here, new friends grandbabies.  I laugh when I hear or see the word  "baby bump"  obv written by people without ever having that grace their bellies.  Tis not a BUMP tis a large hard moving LUMP of LIFE.  Sometimes tickly most times bugs you and you cannot keep a cup of tea on it when its contents decide to play roly poly.

Jerry from Cape Cod.  You hang in there.  I will always keep you fondly with lobsters in my mind.  (hahahha) and of course Jerry from Faulklands (my name for you)  keep yourself good and watch those horses.

Mr. Yoop, you continue to amaze, me.  You also Mr. Yawn.  I miss Mr. Fountainhead and his antics over the fountainettes and of course the Mrs.  One cannot help but think.  Roxanne,  I miss your daily imputs of recipes, and such.  And kidney cancer info.  (It was suggested that I contact you for some stuff pertaining to my up coming mess I am in.)  but alas lost the addy did I.

Mr. Bill,  Carver, and oh so many others.  I think we have some sort of bond.  Not really out of Mel.    Oh speaking of that.   I had a checkup at PMH and got the go ahead for one year till next appt.  (that was soooo long in coming,  since 2004)  My eyelid is displaying signs of LMM still, but that is being checked out as there is not too much they can do, without me looking more stupid than I do now with it.  So we wait and see.

So still six months on eyelid (diff hospital)  one year on mel.  6  months on boobs,  and now this mess.  OH WELL.  so everyone, be nice to each other. If no one else does, I love you all.

 

Bonnie Lea

Hang in There

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BillMFl's picture
Replies 17
Last reply 1/25/2012 - 7:16pm

Personally, I really like the guy. Handsome, articulate, wholesome. A lot like me. So whats not to like? Oh ya. He's a Morman. So why should that matter? I remember when A Catholic could not be President because America would then become a servant of the Pope!!! God forbid. JFK shattered that myth. But to many of my uber right wing gun toting God speaking evangelical baptist family members, neighbors and (almost) friends, a MORMAN IS NOT A CHRISTIAN.  Is this not the epitome of discrimination? Does not the very Constitution on which our nearly perfect Democracy is based specifically rule out discrimination based on race, color or creed? All men created equal, blah, blah, blah? Notice there was no specific mention of women? But I digress.

So poor old Mitt cannot pass the most fundamental test of the far right. Being a "real" Christian.  At least Obama broke down the race and color barriers. Which is one of the reasons I proudly voted for him. And while I'm at it, why not a Jew or a woman, or a black Jewish woman for President? The sad fact is prejudice runs deep in the heart of all religious fundamentalists. Be they Christian, Muslim or Jew. And all the fundamentalists are scary.  Given the chance,they will happily deny the freedom of choice to all other competing beliefs. Dogma reigns supreme and exceptions to dogma are fiercely resented.

 

So chew on this and spit back at me if you got any balls.

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Personally, I really like the guy. Handsome, articulate, wholesome. A lot like me. So whats not to like? Oh ya. He's a Morman. So why should that matter? I remember when A Catholic could not be President because America would then become a servant of the Pope!!! God forbid. JFK shattered that myth. But to many of my uber right wing gun toting God speaking evangelical baptist family members, neighbors and (almost) friends, a MORMAN IS NOT A CHRISTIAN.  Is this not the epitome of discrimination? Does not the very Constitution on which our nearly perfect Democracy is based specifically rule out discrimination based on race, color or creed? All men created equal, blah, blah, blah? Notice there was no specific mention of women? But I digress.

So poor old Mitt cannot pass the most fundamental test of the far right. Being a "real" Christian.  At least Obama broke down the race and color barriers. Which is one of the reasons I proudly voted for him. And while I'm at it, why not a Jew or a woman, or a black Jewish woman for President? The sad fact is prejudice runs deep in the heart of all religious fundamentalists. Be they Christian, Muslim or Jew. And all the fundamentalists are scary.  Given the chance,they will happily deny the freedom of choice to all other competing beliefs. Dogma reigns supreme and exceptions to dogma are fiercely resented.

 

So chew on this and spit back at me if you got any balls.

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Dick_K's picture
Replies 1
Last reply 1/6/2012 - 4:33pm
Replies by: Dick_K

I just logged in on my iPhone only to find a completely new interface.  The new view no longer mimics what is seen when logging in via computer.  Can no longer see number of replys received and not read since last visit and is much more cluttered.  HUGE step backward (in my opinion).

Dick

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