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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited October 2014
  • surfdreams
    surfdreams Member Posts: 1,132
    edited November 2014

    I hear you Nel! I've got a broken big toe, and a broken little toe on the same foot (toes break so easily these days!). They hurt, but not like they would if I could fully feel them.  So - if there's anything good to say about neuropathy.....   

     I was at the dr. today for a quick zometa infusion, and was in the waiting room. Another lady there was complaining in a really crabby tone about one of the nurses who told her to have a "good day", and "how was she supposed to have a good day when she had to be there to have an infusion?!?!   I kind of said out loud behind my magazine, "Well, it's better than the alternative". My lack of filter these days kept that comment from staying in my head, and let it out of my mouth. I glanced up to see her glaring at me. Oh well. The nurse was just being nice. The crabby lady was walking upright and unassisted. She had plenty of breath to complain about the nurse who offended her by being nice to her. You usually don't have to look very far to find people worse off than you, in my humble opinion.  Now how do I go about fixing my filter?

  • GG27
    GG27 Member Posts: 2,128
    edited November 2014

    surfdreams,  I don't think your filter is broken at all!  As far as I can see there is nothing to fix, I hate people who beat around the bush.  "Better than the alternative" is one of my favourite sayings these days!  :)  There is just no right thing to say to some people.  Your post made me laugh.  Thanks!  Cheers, Dee

  • KiwiCatMom
    KiwiCatMom Member Posts: 2,553
    edited November 2014

    Nel - too funny, and not funny all at the same time.  Surf - don't "fix" your filter. Nothing wrong with it.  

    I think we need to take a page from Richard Feynman's book:  "What do you care what other people think?"  You can listen of YouTube.  He was a brilliant physicist with a wonderful sense of humour.  He was dealing with cancer when he wrote the book. So I've kind of subscribed to his philosophy - what do I care what other people think?  When someone "knows" what I'm thinking, they're usually about 100% wrong. :)  

      http://www.youtube.com/watch?v=HmbTbtWoWwY

    Glad you liked the Hello Kitty / Douglas Adams headstone.  When I've mentioned it to others, they just squirm.  Pre-Stage IV dx, they would have laughed, but now it just makes them squirm. My husband finally said what he wants on his headstone:  "The End".

  • Nel138281
    Nel138281 Member Posts: 2,124
    edited November 2014

    surf - -do not fix your filter , then it might mean I had to think about curbing mine and I really kind of like letting it rip.  I was always a bit like that - but now,  look out!   My counselor describes it as me throwing spears at people.  He literally stood up in a session and did a spear throwing act.  Loved it!   

    And that woman needs to get a grip  - I certainly have some days that are more difficult than others - but truly am grateful  to be here every day

    Happy November 1st

    Nel

  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited November 2014

    surfdresms,

    The crabby lady will probably always be crabby. Your comment probably made her think her crabbiness was justified. Rest assured, that come what may, your life is better for your lack of crabbiness!

  • steelrose
    steelrose Member Posts: 3,798
    edited November 2014

    surf, don't you dare fix that filter! It's dead on (pun intended). My dad always used to say, "It beats the alternative," and how right he was.

    Love this thread, and all of you, by the way. Keep on!

    Rose. 

  • Nel138281
    Nel138281 Member Posts: 2,124
    edited November 2014

    foot surgery about 2 weeks ago.  hobbling around with a boot and crutches, doing far more weight bearing than recommended!  My surgeon would flip out.   So seeing my onc this week I say   "I would rather have a mastectomy than foot surgery, recovery is much easier.  But as my foot surgeon pointed out - I do not walk on my boobs."    Onc starts to laugh and I say "OK maybe in my 20's when I drank more, I did try to walk on my boobs"  My onc puts his head down on his desk and starts to laugh out loud.    

    Just what I do. 

  • steelrose
    steelrose Member Posts: 3,798
    edited November 2014

    Nel,

    I remember those days... wow... I get tired thinking about it. Hope that foot heals up fast!

    xo

    Rose.

  • Mompsych
    Mompsych Member Posts: 516
    edited November 2014

    great response Nel. Made me chuckle..hope the foot heals quickly!!

  • fujiimama
    fujiimama Member Posts: 800
    edited November 2014


    so funny! Love the walking on boobs comment. I've recently started faslodex. My nurse was about to start the first shot and I started singing 🎶 "All About That Bass". She started laughing and so did the nurses around the corner.

  • Brendatrue
    Brendatrue Member Posts: 1,830
    edited January 2015

    Ah, it's been a while. For someone who spent way too many precious hours of life dealing with insurance BS last year (yes, me--what, you, too?), this is especially funny. When I think of battles, I don't think of battling cancer, I think of battling my insurance companies. (Yes, Aetna, I was just thrilled when I saw you mentioned in the piece below.) Thanks, as always to The Onion. http://www.theonion.com/articles/delighted-health-insurance-executives-gather-in-ou,35289/

    Delighted Health Insurance Executives Gather In Outdoor Coliseum To Watch Patient Battle Cancer

    HARTFORD, CT—Creating an electric and intimidating atmosphere with their cheers and vocal cries for blood, throngs of health insurance executives reportedly crowded into a massive outdoor coliseum on Aetna’s corporate campus Monday to watch one of their policyholders engage in a life-or-death fight against cancer.

    Sources confirmed that the stone arena was filled to capacity for the highly anticipated spectacle, with over 90,000 officials attending from providers as far away as WellPoint, Kaiser Permanente, and HCSC to see if the patient could survive an intense, brutal struggle with the advanced stage III illness.

    “Today we bring you one of our most thrilling challengers to date: a 57-year-old caucasian male with preexisting high blood pressure and a family history of heart disease,” said Blue Cross Blue Shield CEO Scott Serota from an extravagantly decorated box seat, his booming voice immediately silencing the raucous masses of middle-aged executives. “He holds a privately purchased Aetna PPO with a $400 monthly premium and $1,500 annual deductible, but faces the fight of his life against an aggressive form of multiple myeloma, one of the most ruthless killers known to man.”

    “Bring out Aetna member #ABP80424!” Serota continued as the withered patient was wheeled into the sand-filled arena on a small gurney to loud boos and whistles. “Let the battle commence!”

    According to reports, the policyholder, who was equipped with limited resources of his own during the fight, immediately faced the punishing and grave challenge of successfully submitting claims for a preliminary consultation with an out-of-network oncologist. As a slew of taunts and jeers rained down from the hordes of health insurance professionals, sources said the increasingly weary combatant suffered a crushing blow upon receiving a $60,000 bill for one week of inpatient care that exceeded his plan’s hospitalization coverage limit.

    A tense hush reportedly fell over the arena moments later when a CT scan showed the cancer on the brink of remission, though the stadium soon erupted into emphatic cheers when the patient was not approved for further sessions of targeted chemotherapy that were deemed “medically unnecessary.”

    “He’s putting up a pretty strong fight, but they really need to put an end to this soon—he’s starting to cost way more than he puts into his annual policy,” Humana executive vice president James E. Murray said as the patient, after making notable progress in obtaining a referral from his primary care physician, was instantly bombarded with an overwhelming barrage of indecipherable paperwork required to justify a follow-up appointment at his radiation therapy clinic. “But overall, though, it’s been an incredible show. It was especially exciting watching him try to recover after they refused to cover his doctor’s treatment program for being experimental and medically unproven. Frankly, I’m impressed that he even managed to come back from that.”

    “C’mon, kill him already!” added a screaming Murray, turning his attention back to the fight. “Finish that worthless scum!”

    Experts confirmed that such cancer battles—along with kidney disease battles and lengthier diabetes battles—have been held in the coliseum since its completion in the early 1960s, and have remained a popular form of entertainment among American health insurance executives ever since. However, demands for more graphic carnage have reportedly grown in recent decades, with audiences clamoring to see patients become crippled by increasing premiums and left to die as insurers purposefully delay processing authorization forms for costly surgical procedures.

    The most famous of the coliseum’s challengers is said to be legendary Cigna plan member #ZH0115672, who bravely fought breast cancer for six years before finally succumbing to the disease in 2004. Sources said the 63-year-old policyholder almost incited riots in the stands after contesting a claim for post-operative mastectomy care through third-party arbitration, though the situation was fortunately defused when the arbiter sided with the health care insurers.

    “Sometimes if the patient lasts long enough and things get a little too drawn-out, we’ll unleash all the exclusions and caps we secretly hid throughout the contract for the most expensive medical services,” said UnitedHealth chief financial officer David Wichmann, watching closely as the policyholder darted back and forth between specialists to repair damage from the substandard care of a recommended in-network doctor. “It’s just a little fail-safe we have in our back pocket to make sure the crowds don’t get restless. Besides, these patients know the risks when they step into the world of HMOs and high-deductible health plans.”

    “Oh, he’s done for,” Wichmann added as the helpless man fell to his knees and began begging for help paying his $800 monthly prescription of generic Zometa. “This is my favorite part—where we decide his fate.”

    At press time, deafening chants of “Deny! Deny! Deny!” drowned out the patient’s desperate appeals against new coinsurance charges, after which the president of Aetna reportedly smirked and slowly dragged his index finger across his throat.image

  • Nel138281
    Nel138281 Member Posts: 2,124
    edited January 2015

    Love this.  New term I heard the other day,apparently being used by insurance companies  "Catastrophic Longevity"   Fits very nicely with above!

    I am pretty sure I am the definition of catastrophic longevity, $4000 a month for tykerb and Herceptin every 3 weeks!   


     

  • KiwiCatMom
    KiwiCatMom Member Posts: 2,553
    edited January 2015

    Catastrophic longevity. Good grief. Sounds like insurance! So grateful for free health care here. One less battle to fight.

    Good luck!

  • Rosevalley
    Rosevalley Member Posts: 3,061
    edited January 2015

    Brenda- hilarious post on the cancer colliseum/ insurance companies.

    Pretty funny about "all about the bass" and faslodex. Funny song.

  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited January 2015

    So happy to see this thread active again. If humor could be put in pill/infusion/injection form then perhaps we could study it and confirm that it has a very positive effect on slowing down or putting bc into remission.I have now eliminated the term "long term survival " from my vocabulary and replaced it with catastrophic longevity

  • Romansma
    Romansma Member Posts: 1,515
    edited January 2015

    Thanks for the heads up on Feyman's book, Kiwi. It sounds like something I'd enjoy reading. Going to find it on Amazon. Love the headstone too.

  • Tina2
    Tina2 Member Posts: 2,943
    edited January 2015

    "Catastrophic Longevity"

    Inspires Stage IV levity.

  • jobur
    jobur Member Posts: 726
    edited January 2015


    Good one Tina!

     

  • Nel138281
    Nel138281 Member Posts: 2,124
    edited January 2015


    tina  -love that

  • Brendatrue
    Brendatrue Member Posts: 1,830
    edited January 2015

    Someone sent this to me after I shared a mind boggling story about my EHR at a local hospital. (I've had both really good experiences and pitiful, frustrating experiences with providers using EHR's.) Thought some of you might like it, too.

    Hospital replaces EHR with new, efficient “paper chart” system

    GOMERBLOG|TECH| JANUARY 18, 2015

    Citing slow load times, confusing menu structure, and overall frustration with the user interface, St. Barnaby’s Hospital has announced that the old electronic health record (EHR) will be replaced with a new state of the art binder-based system, in which a so-called “paper chart” is kept for each patient.

    The new system, brainchild of prominent New York internist Dr. Brent Shelby, was developed to improve efficiency of workflow on the wards and to cut down on the burden  of useless auto-populated information that currently makes up approximately 95 percent of every clinical note in the EHR.

    “I found that I was spending up to 30 minutes trying to cut and paste together a decent  medical history from twelve different outpatient encounters in the EHR,” stated Dr. Shelby as he scrolled through a typical patient’s medical record. “Take this consult note for example. It’s nothing but a negative allergy history, a list of expired medications, and a religious preference. I don’t think the doc actually wrote anything.”

    According to Dr. Shelby, the chart will provide instantaneous access for ordering medications, an improvement on the approximately 15 minutes it currently takes to log in, pull up a patient by searching the floor census, accessing the current visit, searching the order database, entering the order, selecting a dose range, selecting an administration time and stop date, submitting the order, approving the allergy override, clicking yes to “Are you sure?”, and finally a 20 second period of waiting for the hourglass to vanish.

    In contrast, with the new system, a physician will open the chart and write “Tylenol 500 mg PO now,” close the chart, and place a flag up to indicate an order has been placed. So far, nursing and residents have been very pleased with the new system.“Well, I don’t need to go up to the neurosurg call room anymore to use the one computer that works,” said intern Jeb Kowalski. “Plus, it takes less time to physically copy from yesterday’s note than it does to cut and paste in that slow-ass EHR.”

    Floor nurse Jennifer Wilks agreed: “Yes, now there’s no electronic evidence that I didn’t  follow a stupid order from that moron intern Kowalski. I just rip out the page of orders I don’t like, and no one ever knows. It’s awesome.”

    At press time, several physicians we observed were throwing their office computers out the window and dancing ecstatically in the hallway.

    Founded by an emergency physician, GomerBlog is Earth’s finest medical satire news site. (according to www.gomerblog.com )

  • Brendatrue
    Brendatrue Member Posts: 1,830
    edited February 2015

    I was reading a Medscape article earlier today, and it included this satirical piece from Katherine O'Brien's blog. (http://www.cancernetwork.com/blog/why-cant-every-month-be-breast-cancer-awareness-month?GUID=650FB91E-F185-45E2-AD15-2DC6CFE93EB7&XGUID=&rememberme=1&ts=02102014

    Why Can’t Every Month Be Breast Cancer Awareness Month?                     

    Blog | October 01, 2014 | Breast Cancer By Katherine O’Brien

     Earlier this year, a UK-based group for people with pancreatic cancer launched a print advertising campaign incorporating an audacious tagline: “I Wish I Had Breast Cancer.” At first I was shocked. But the more I thought about it, I had to agree that the grass does look greener in our glorious pink universe, especially at this time of year. Pancreatic cancer is particularly cruel—it is almost always detected at an advanced stage, with survival generally measured in months. If you read The Emperor of All Maladies, you may recall that Siddhartha Mukherjee’s book ends with a reflection on the evolution of cancer treatments, from ancient Egypt to 2050 AD. “[Now] give Atossa metastatic pancreatic cancer in 500 BC,” wrote Mukherjee. “Her prognosis is unlikely to change by more than a few months over 2,500 years.”

    The median survival time for someone with metastatic breast cancer is 18 to 24 months. I suppose that is “better” than a metastatic pancreatic cancer diagnosis, but I’m not sure that makes it any easier for the patients or their families. Unlike pancreatic cancer, some breast cancers can potentially be detected early. Unfortunately, early detection is not a cure. Most of the 155,000 US people currently living with metastatic breast cancer were originally treated for early-stage breast cancer—but their cancer came back 5, 10, 15, and even 20 years later—even though many of them took excellent care of themselves and had regular mammograms and other follow-up care as their doctors directed. This is not a popular message during October, or really any of the other 11 months of the year.

    But thanks to the “I Wish I Had Breast Cancer” campaign, the scales have fallen from my eyes and I am embracing my chaotic cellular activity. I am 100% “breast cancer 4 life” and let me tell you, it is fantastic! Just like people who keep their holiday decorations up year-round, I am going to celebrate Breast Cancer Awareness Month every month. (Thankfully, I am at my treatment center every month, so it is easy to stoke the flames of my personal and perpetual Yule log of cancer awareness.)And let’s face it, breast cancer patients have the best swag. Other cancer patients may have neoplasms, tumors, or invasive tissue that just isn’t much fun to work with from a marketing or promotional perspective. We breast cancer patients have hilarious and tasteful T-shirts on which we talk about boobies (love ‘em!), ta-tas (save ‘em!), and hooters (squeeze ‘em!). My community hospital even joined the festivities with its witty campaign: Billboards invite people to call 555-THE-GIRLS to schedule a mammogram.

    National and local news reporters will devote the entire month to our awesome and fun disease. Anchor teams wait all year to bust out their cute pink dresses and ties. NFL teams will temporarily suspend their uniform regulations and flaunt our girly colors. Because, as we know, breast cancer is a pep rally. Obviously the half a million people around the world who will die from metastatic breast cancer this year are Eeyore-like losers—gloomy people with weak attitudes. Yes indeed, thanks to 3 decades of breast cancer awareness, we are showing this disease who is in charge. You know what the greatest thing about having stage IV breast cancer is? Only your oncologist cares about the pesky details. As far as the general public is concerned, we all have the same disease—and it’s all good. You’ll be fine!

    Breast Cancer Awareness Month is a magical time that brings out the child in each of us. You can keep your Santa Claus and your Tooth Fairy, I believe in the warm and fuzzy feeling of breast cancer awareness. There is nothing more heartwarming than seeing grown men wearing pink tutus or sparkly Bedazzled bras, especially when you consider how many cancer breakthroughs are directly attributable to these selfless costumes. Best of all, as if by unspoken agreement, for the past 30 years, no one has spilled the beans.

    Spoiler alert: The lump of cancer in a patient’s breast won’t kill him or her.

    Another spoiler alert: No one dies from early-stage breast cancer.

    Still another spoiler alert: Metastasis occurs when cancerous cells travel to a vital organ and that is what kills people. (Shh! Mum’s the word.)

    Too long, didn’t read: When breast cancer goes to your bones, liver, lungs, or brain, it does eventually kill you. But you didn’t hear that here. We must uphold October’s code of roses and lollipops! 

  • Brendatrue
    Brendatrue Member Posts: 1,830
    edited March 2015

    If I End Up On Life Support, My Family Knows The Type Of Long, Protracted Legal Battle I Would Want By Donald Reubens

    From The Onion ISSUE 51•08 • Feb 25, 2015 http://www.theonion.com/articles/if-i-end-up-on-life-support-my-family-knows-the-ty,38089/

    For a long time, I, like most people, put off the unpleasant task of drawing up a living will. But as I’ve gotten older, I’ve come to realize the importance of having a plan in place in case I become incapacitated and decisions must be made about whether to extend my life through artificial means. This way, if I ever end up unconscious and on life support, those closest to me will know precisely the type of nasty, prolonged
    legal battle I would want.

    I worked closely with my lawyer to put everything in writing, and then spoke to my loved ones so they would understand that should I ever require machines to maintain my vital functions, they could simply refer to this document, which clearly lays out my wishes for them to lawyer up and wage a legal war so long and traumatizing it tears the family apart.

    Some tough conversations needed to be had. Over the course of a few weeks, I sat down separately with my wife, each of my four adult children, and several members of my extended family to detail who would take which side during the litigation, who would no longer be on speaking terms, who would and wouldn’t receive money from my estate to cover their legal fees, and how many agonizing months the whole ordeal would last.

    It’s an important thing to do for your own peace of mind as well as for your family’s. The acrimonious legal maneuvering and bitter familial recriminations surrounding medical possibilities like mechanical ventilation and intubation are too important to leave to chance.

    Had I not been explicit about what I want, how would my eldest son know to hire a real attack-dog lawyer who terrorizes his younger siblings while they’re still just beginning to cope with the impending death of their father? Which decades-old slights would my kids know to bring up in tears when filing suit against their stepmother, my current wife? And who, out of nowhere, should make a last-minute power play that suddenly throws the whole thing into arbitration?

    I’ve designated one of my daughters to absolutely refuse to pull the plug no matter what. My other daughter, meanwhile, is to acquiesce after 90 grueling days, in defeat and sorrow, broken down about how everyone’s trying to kill her father. It’s a relief to know that, in the event I’m incapacitated, my final requests about which person suffers lasting emotional trauma and who sues who for power of attorney will be faithfully carried out.

    The last thing I want is to burden my loved ones with tough decisions about how to create devastating rifts in the family that last for generations. No, I want to make those choices now, so they won’t have to later.

    To be clear, I don’t expect to kick off anytime soon. But if, for example, I get hit by a car this afternoon and end up with a feeding tube in my nose and zero chance of regaining consciousness, I’d sure want everyone to be on the same page about which two of my relatives should wind up in a physical altercation that forces a nurse to call security and remove them from the hospital.

    The same goes for if the messy situation blows up and becomes a big news story—a remote possibility, I realize, but one I’ve planned for nonetheless. Simply put, my younger sister is to break down on national TV and say things she’ll regret for the rest of her life. Horrible things. Things the others will never forgive her for—each of which I’ve carefully stipulated in my living will.

    But that’s just me. No doubt other people have very different wishes for how they want their family members to rip each other to emotional shreds should the unthinkable happen. Those are their preferences, and I’m not going to judge them. I’m just glad that my own loved ones now have a plan in place to rack up enormous legal costs while they duke it out for months on end, just the way I’ve chosen.

    So, here’s a little advice. We all know that if, God forbid, we end up in a vegetative condition, it will be extremely wrenching for our families. But take it from me: Taking the time right now to decide just how legally, psychologically, and financially wrenching you want it to be for them will give you all the comfort you need.

  • Brendatrue
    Brendatrue Member Posts: 1,830
    edited March 2015

    Unfortunately, I have seen families torn apart as they challenge each other by the bedside of a loved one who is dying. In the midst of slogging through the update of my advance directives and other end of life matters, I found the above column in The Onion to be funny in a sad sort of way.

  • surfdreams
    surfdreams Member Posts: 1,132
    edited March 2015

    funny Brenda! I've always said, nothing tears a family apart like a good death or inheritance. Glad you revived this thread. I've missed it!

  • Beachbum1023
    Beachbum1023 Member Posts: 1,417
    edited March 2015

    Good afternoon everyone, I have decided to donate my triple negative cancer body to the Cleveland Clinic donation program to train our future Doctors and hopefully be a part of a much needed cure for triple negative BC. They will use what they need and then cremate the remains to be returned to the family or laid to rest with all of the other donations in the crypt in their Mausoleum at the Lake View Cemetery. And better yet it is all free to me. That leaves me to spend the money I have on me and not leave it for anyone :) That way when I check out I will hopefully do some good, and I will still be close to the Lake with a view. I told my brother I had my arrangements made, and no worries for anyone. I told him to have a party, and I will rest in peace forever. He would have to pay for the party :) If I plan it right, the last check I write will bounce!

    I did that on purpose, I want to be close enough to haunt them for eternity!

  • Romansma
    Romansma Member Posts: 1,515
    edited March 2015

    I like the bouncing check, Beachbum, lol!

  • Nel138281
    Nel138281 Member Posts: 2,124
    edited July 2015

    It has been awhile for this thread so here goes!

    I was out with a group of work colleagues Friday night. One woman was talking about how she doesn't accessorize much. My response -I really do not accessorize! - I don't wear my foob.

    I think of my foob as an accessory!

  • PattyPeppermint
    PattyPeppermint Member Posts: 11,162
    edited July 2015

    ver funny nel. Glad you revived this thread. I had forgotten about it. Love some good black humor

  • jobur
    jobur Member Posts: 726
    edited July 2015

    Me too Patty!

    Ed: Deleted the rest. My apologies to anyone who read it. In retrospect this was too dark for even this thread. Sorry.

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