Susan Rahn
@Stickit2Stage4
Followers
5,954
Following
2,378
Media
5,104
Statuses
40,611
#Metastatic #BreastCancer & #Writer for @AdvBreastCA_HU | #AidinDying #Advocacy #PublicSpeaker for @CompAndChoices . She/Her ⚡️Stop Using Battle Language⚡️ 💙🌊
Rochester, NY
Joined February 2011
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Send us removal request.
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Pinned Tweet
In April 2018, I joined
@CompAndChoices
& other NY advocates in Albany to tell our stories to State Legislators. NY should have Medical
#AidInDying
as 10 other states & Washington D.C. do. I’m not dying now but I should have this option available when I am.
#StopTheSuffering
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Asking for positive thoughts, prayers or whatever good juju can be sent out into the universe for a family member starting a rigorous multi-chemotherapy protocol tomorrow for an aggressive
#cancer
.
Thank you….💙
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2K
Unpopular Opinion
People with
#Cancer
don't need to hear how a positive attitude will make things OK. We are allowed to be scared, sad, and angry. If we verbalize those feelings, offer empathy. Don't shut us down by policing our emotions.
Kthxbye
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I just can’t -
@LibbyMbc
you will be missed 💙
#BCSM
#ThisIsMBC
I hope the
#KarensOfCancer
have MANY sleepless nights.
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Waiting for results of a Brain MRI is my least favorite waiting game. But I need to know why this is happening to my arm and leg.
If the news isn't good, is it wrong that I'm hoping for MS or Parkinson's and NOT
#cancer
??
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Waiting for my MRI…….
I need to hold it together and get thru this scan.
I don’t say this often (or ever) but prayers would be appreciated 😞
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No one knows how much time we have, but we shouldn’t be spending it tearing others apart and waging public campaigns against each other.
Peace & Love
Susan
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I need prayers - please!
I’m not in town and my dad fell. My mom is hysterical and the fire department is en routes.
I don’t know why he fell or how bad it is. Please, keep him in your thoughts.
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Are there people who have faked a diagnosis? Yes. Libby wasn’t one of those people.
Today, I grieve for Libby’s family and her daughter Violet. I can only hope that these women who treated Libby so awfully will learn from their behavior and be better.
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Dear Oncologists Everywhere,
Please stop using
#clinicaltrials
as a last resort or waiting until your patients have gone through 3-4 treatments. You’re waiting too long. Start looking the day we walk into your office.
We want to live,
Cancer Patients Everywhere
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📣THIS IS WHAT ADVOCACY LOOKS LIKE FOLKS! .
@Sarah_Hyland
just took her shitty experience and used it to help everyone that told her THEIR shitty experience with .
@cvspharmacy
in the hopes of making things better for EVERYONE not just her.
#FuckingAwesome
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Cancer either breaks a marriage or it brings a couple closer. More often than not, they are beyond repair.
I present to you one of the most dedicated, attentive and loving husbands, who's wife, Katie, has
#MetastaticBC
. This is true love.
#ThisIsMBC
#bcsm
Not every hero wears a cape, sometimes he wears a hospital blanket at 4:30am because his 33 year old wife has terminal cancer and he refuses to leave her side at the hospital.
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If you have to take shots at someone who recently had a medical emergency because you have no redeeming qualities AND you have the credentials of M.D behind your name: you might be
@DrOz
New Dr. Oz ad attacks John Fetterman as “hiding from voters” while simultaneously acknowledging Fetterman has been off the campaign trail recovering from a stroke.
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There was no empathy, no compassion, no love shown to her. They never apologized to her. They never admitted they were wrong.
Now she’s dead.
It is not our responsibility or job to be Google investigators against our peers in the MBC community.
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HOWTHEFUCKEVER
Libby wasn’t faking it. She suffered
She broke bones weak from cancer. Her lungs filled w fluid containing cancer cells. Her brain had metastatic tumors. She used social media as an outlet for her anger.
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She posted raw pictures to show how MBC slowly destroys the body from the inside
This harassment & grown ass bullying is just 1 reason why I left advocacy, the biggest. Women I loved, that I considered friends were downright awful to a young mother living w the same illness
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No one “battles”
#cancer
.
They live with it while treating it. Some people go on afterwards & some end up dying from it.
There isn’t a “battle” - there never was and never will be.
#FreshWords
#EndBattleLanguage
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Spot on! None of us are our illness. Libby did her best to raise awareness, money, and make memories for her daughter. 💙
@Stickit2Stage4
Libby was not her MBC. She was a mom, to an adorable 4 year old daughter. She was an artist and a talented photographer. She was open and brutally honest about what MBC did to her and her family. I will miss her
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They didn’t believe she had cancer. They believed her fundraisers were fraudulent. They were out for blood like a pack of wolves hunting their prey
They went after her when she refused to leave Canada, her home & family to travel to USA at a well known Cancer Center in Manhattan
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Having to explain to people that I'm not a survivor, a thriver, a fighter, a warrior or any other word they need to use to describe me to make themselves more comfortable. I'm just doing what I have to in order to stay alive as long as possible
#CancerRealityCheck
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These women couldn’t fathom why she would turn down such a generous opportunity to get a second opinion and a place to stay. SHE MUST BE FAKING CANCER. They scrutinized her scan results. They even contacted her oncologist in Canada in the hopes of proving this massive charade.
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@refinery29
understands how important it is to untie the pink ribbons & put the spotlight on
#MetastaticBC
giving those of us a platform to tell our stories in our own words. Thank you to
@Novartis
for sponsoring this video.
#KissThis4MBC
#bcsm
#bcam
#PinkIsNotACure
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Thanks, everyone! I'm home & waiting for MyChart to ding me with results.
Knowing I have all of your support makes this whole process easier.
#ThisIsMBC
#bcsm
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I just donated to see
@JohnFetterman
run for Senate in Pennsylvania.
While I don't live in PA, we need to for ppl that genuinely want the best for America & their constituents & make sure those that don't never hold office (again).💙
Will you join me?
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It's just hitting me that this is the last of my son's teen years and I'm still alive!
Shortly after his 14th birthday I was told I had 2-3 yrs left to live.
Today, I celebrate with my boy. Special lunch with him and cake with our family later.
#gratitude
#ThisIsMBC
#bcsm
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My Dad is having a second surgery for bladder cancer. Please send good juju into the universe for him & my mom.
It's going to be a long day tomorrow.
#ItNeverEnds
#ThursdayThoughts
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@TheEllenShow
Thank you!!! It's so important for people to know that It's OK to not be OK. We all need help sometimes. We need to take away the stigma surrounding mental health issues like depression, anxiety and the rest.
#BellLetsTaIk
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This is why you need to follow
@Stonekettle
- his tweets get picked up by national media
@HuffPost
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Calling on the
#bcsm
crew to say prayers or whatever you do when one of us is preparing to head back to the heavens.
#ForTori
#ThisIsMBC
💔
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⚠️ FAIR WARNING ⚠️
Please, please do NOT write, say OR think Tori is “loosing” or has “lost” her battle
I will come after you
She does not want that said about her & I promised her on many occasions I would honor her request.
I hope our
#bcsm
fam will
also have her back
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Tori has been sleeping since I arrived. I’m sitting by her side. Holding her hand & reading her all the beautiful messages from everyone. 💙
#bcsm
#ThisIsMBC
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A “fake” article was published today about
@LibbyMbc
A public apology needs to come from every single person who dragged Libby the last 2 yrs of her life - the most difficult ones. Esp those that dragged her the week before she “fake” died
#MBCTravelers
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Tomorrow morning I finally see the
#PalliativeCare
pain doc. I’m ready for relief regardless of how it happens. I really hope he can do something for me and that I don’t have to wait longer
#ThisIsMBC
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Just want to clear something up for healthy people:
If someone has had
#cancer
, gone thru treatment & receives an "all clear" from their Oncologist, they are NOT "cured"-Let me say that again..
They are NOT "cured".
That person is No Evidence of Disease.
Cancer CAN return.
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Dear
@GMA
I’m not “thriving in Pink”
I’m living w/
#MetastaticBreastCancer
Why is it necessary to turn a deadly disease into a slogan; implying we are living our best lives & while wearing Pink?
Be truthful telling patient stories w/o glossing over the facts
#bcam
#bcsm
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If you're not following
@Stonekettle
your Twitter feed is severely lacking
Congressional Representatives are SUPPOSED to look out for the people in their districts. That's LITERALLY their job.
Trump seems to think his job is to look out for rich assholes, banks, the GOP, billion dollar companies, Russia, and Kim Jong Un.
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The worst kind of heartbreaking pain is having your dearest friend ask you to visit her before she dies. 💔
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All dignity was lost today. Stopped MRI after 2 scans. Tears streaming down the sides of my face. The tech was so nice and added a pillow under my knees.
It made a HUGE difference
When it was all done I BEGGED him to find SOMETHING/ANYTHING so I can get this fixed
#ThisIsMBC
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Ok - apparently we need a 🧵reminder
#BreastCancer
that does NOT leave the breast can successfully be treated. It may never return.
But it CAN and DOES in many people. Sometimes up to 20 yrs later.
When it does & goes to lungs, bones, brain and/or liver - it’s NOT curable 1/5
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As I sit here drinking fucking contrast, reading tweets that Cokie Roberts died, my blood boils. Every news outlet is ignoring that she died from Metastatic Breast Cancer.
#SayTheWord
Say it! Educate!
Honor her by not sugar coating her disease. Report honestly!
#CokieRoberts
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This woman is a straight-up badass Married 64 yrs, raised 2 kids,moved across country (twice), lived thru 3 separate cancer diagnoses (so far), moved her mom in with her when dementia took hold, now recovering from a hip replacement & puts up w/my BS💕
#HappyBirthdayMom
#ThisIs83
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Thanks to science & a fuck-ton of luck, I'm still NED! Thank you all so much for the positive vibes and well wishes 💙 A big thanks to
@UR_Med
for updating their
#mychart
system so I could see my scan reports within 12hrs!
#bcsm
#ThisIsMBC
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@mattbc
This includes everyone, correct?
Including terminal cancer patients who've been prescribed, say, Ritalin due to treatment? Even if palliative care is managing all medications with an oncologist?
This could mean pharmacies will treat us just as shitty as when we pick up opioids?
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As a blogger of 7+yrs, I find it appalling when someone does a copy & paste on their site w link to the original blog at the bottom You’re not doing what you think you’re doing
Get express permission, ask for a guest post OR write your own intro & post a link to original content
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@JaniceTNBCmets
@LibbyMbc
I know we all can’t be BFF’s but we can and must respect each other. We all bring strengths to the table. I’n this community It’s about everyone as a whole not one individual person.
Sending big hugs 💙
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Jesus Christ
Not only am I going to be denied a ventilator because my pre-existing condition excludes me due to the shortage but I'll also die alone
should I go to the hospital if I get
#Covid_19
?
Decision made. I'll die in my own bed, thank you very much.
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10 years living with MBC. It's a significant milestone. Today is that day for me. I'm having a difficult time reconciling this day with those who haven't and won't.
#BCSM
#ThisIsMBC
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Just received the results of my spinal MRI. Literally, 15 mins ago.
From T12 (where I previously had radiation for metastasis) all the way down to S1 - each disc is herniated. Some of which are hitting the nerves
It’s a wonder I’m still mobile at all
#ThisIsMBC
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Giving not so awesome news to my son is by far the absolute worst.
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@nowthisnews
When you think you're going to crush someone because you use words like ”peer-reviewed” only to be counter crushed because you're up against the Goliath of the medical community and never had a chance in the first place.
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Welcome to the world!
Piper Olivia -Born 01/10/2022
Nonnie loves you 💕
#ImAGrandmother
#BabyGirl
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9yrs ago this week, I saw my GP. Little did I know how drastically & fundamentally life would change by the 28th
This isn't me celebrating a "cancerversary" because the days/weeks leading up to it sucked
This is me acknowledging how lucky & thankful I am to be alive💙
#MyBeauty
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@DartmouthFfl
@AndyOstroy
Wrong
His 18 yr old friend bought the gun for Rittenhouse and then gave it to him that night.
His friend has been charged on felony counts that could put him away for 25 yrs.
Bottom line, this never would have happened had he just stayed home
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Dear Healthy Folks,
This post is for you. Stop using battle language when talking about Cancer patients while we are living with Cancer and especially after we die. Most of us hate it. 👇👇👇
In a new report titled “Missed...
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Obligatory
#ScanDaySelfie
this morning as I head out for my bone & CT scans. Thanks to better living thru chemistry, my fabulous GP &
#PalliativeCare
doctor, I am not anxious nor worried today. I also had a restful night's sleep! Hopeful the NED streak will continue 🍀🤞
#bcsm
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Dear
@SU2C
@katiecouric
Your intentions are good but your narrative is misleading
FACT: Mammograms are a diagnostic tool, they FIND cancer, they do NOT save lives
FACT:
#BreastCancer
can return up to 20yrs after successful treatment
FACT: Up to 30% dx’ed will develop
#MBC
Jo caught her
#breastcancer
early and treated it successfully. Learn what screenings are right for you at .
#CancerScreenWeek
#StandUpToCancer
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Breast cancer isn't a pretty pink party. It's a lonely, awful isolating disease. Especially when ur terminal.
#BreastCancerRealityCheck
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When I tweet a thread about Stage 4 breast cancer - it isn't to offend or divide people. I am inclusive to those who had an earlier Stage and are healthy now after treatment.
My purpose is to educate those who have perhaps heard only one side of the breast cancer narrative 1/2
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I am SO excited to share my beautiful precious granddaughter. She is almost three months!!
#DisneyVibes
#GransPrincess
👑
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Dear
@KellyRipa
I appreciate you doing a segment regarding
#BreastCancer
HOWTHEFUCKEVER
For the love of everything - STOP saying “prevention” it’s impossible & paints a false narrative. RISK REDUCTION is the accurate language.
From all of us living w/
#MetastaticBreastCancer
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@mattbc
The elderly & disabled are viewed as disposable - even here in the States.
I hope that changes some day but I know it won't be in my lifetime.
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I have finally been given permission to announce.....
SHE SAID YES!!
My son and his longtime girlfriend are now engaged!! 💍
#NewGoals2021
#WeddedCollegeGrads2021
It's amazing how your whole day can change on a dime.
My heart is full, so very full.
#April192020
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Dear Adam,
If .
@GOP
votes to kill me and others like me, know that we did everything we could to stop it. We made calls. We were on social media. We will continue to fight. But if my medical care ends & I die, go after those mother fuckers.
Love, Mom
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An unexpected port draw this morning revealed wonky labs. Low Potassium, high liver enzymes and anemia. Scans in June.
#ThisIsMBC
#bcsm
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A family member of mine is very ill & in the hospital. He could use any & all prayers, positive juju or whatever offered for quick recovery with no permanent consequences.
Thank you 💙
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@Caylee42401479
@TheEllenShow
Hearing "Be more positive" or "Just smile more" isn't helpful. When you're in the thick of it, it's like slowing sinking into quicksand w/o anyone to pull u out. We should be cognizant of symptoms in others the same way we are of heart attack/stroke symptoms so help can b offered
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My dad broke his femur in two places up near the femoral head of his right artificial hip. He’s definitely going to need surgery.
And I’m not home…, 😣😢
I need prayers - please!
I’m not in town and my dad fell. My mom is hysterical and the fire department is en routes.
I don’t know why he fell or how bad it is. Please, keep him in your thoughts.
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A HUGE thank you to everyone (especially my son & daughter in law) who made this possible. My flight leaves at 4pm EST. I could not do this without the love & support that’s been shown to me & especially
@ChefGeib
💙
#bcsm
#MBCFam
#ThisIsMBC
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In my 4yrs as a terminal
#cancer
patient, I have caught so much shit because I hate the use of “battle” language.
Folks have tried to argue with me, tell me my thought process was wrong. (what?)
Should anyone say I ‘lost my battle’, I’ll haunt you from beyond - Forever
As a cancer patient, I'm no warrior & I'm not in a fight. Cancer may kill me but I will not die the loser of a battle. Cancer doesn't give a shit if I'm positive.
There's so much pressure on a patient to 'fight' but it's an arbitrary idea; the drugs either work or they don't.
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@alejandraaa267
@mattbc
My son’s university also wants as many students to move off-campus as possible but understand that not everyone can & acknowledge those who can't, can stay.
I believe Harvard has the same policy
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Selfishly, this is unbearable heart shattering pain.
It’s probably nothing compared to what she’s feeling/experiencing & I feel like a failure for not being stronger thru this.
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Dear
@GMA
#metastaticbreastcancer
is not “usually” incurable.
It IS incurable. The best we can hope for right now is NED (No Evidence of Disease).
120 people in the US die EVERY 👏SINGLE 👏 DAY 👏
Kthxbye
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Dear
@lisarinna
-
You cannot get
#cancer
from holding ANY kind of feeling inside. That's not how science and biology works.
Sincerely a person living with incurable cancer
Kthxbye
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When I die and anyone says I died from ”complications of breast cancer” I will haunt every last one of you paranormal activity style
#SayTheWord
#MetastaticBreastCancer
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I’ve had 3 COVID vax
I still wear a mask
I distance myself
I wash my hands after being out
Wipe counters, door knobs & light switches at home
Why do I STILL do this?
1. I love my family
2. I’m immunocompromised
3. My 1st grandchild is due in 19 days
#ThisIsMyWhy
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Today we lost a friend, a fierce advocate & champion of others.
Today a husband lost his bride, his love, his partner
Today a family lost a daughter, a sister, a niece, a cousin & grandchild
Tomorrow we all fight harder so we can keep our dear ones w/us where they belong
#bcsm
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Dear People That Have Never Had Cancer,
We don’t want to hear about what YOU think will cure
#cancer
or what YOU heard/read or was told will cure cancer. We don’t want to hear about conspiracy theories.
We know you mean well but it’s ALL bullshit.
Every Cancer Patient Ever
Ty woman at the gym creeping on me in the locker room. Spies my mastectomy scars and tells me tumeric will cure my cancer. 🤦🏼♀️
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Today ended up being a good day even with the pain. Had an unexpected visit from my son, daughter in law & my gorgeous granddaughter 💙
Later, Dad called checking on me. He normally doesn’t call. That tells me he’s worried. It was the sweetest expression of love 💕
#SaturdayLove
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Headed to Albany. Going to meet w as many lawmakers as I can tomorrow that haven't co-signed onto NY’s Medical
#AidInDying
Act
I may look OK, but don't judge a book by its cover. My next scan may tell a different story. I don't want a painful/lingering death at the end of my life
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Living with
#MetastaticBC
is hard enough but when your friends are dying around you it's soul crushing. You never get over the devastating loss and then it hits you that you're seeing your fate play out in front of you.
#KissThis4MBC
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Hey
@ABC
how about you add Cokie Roberts died from
#MetastaticBC
?
Now would be a great time to remind the public that BREAST CANCER STILL KILLS The same cancer that will kill ME. It's not the ”good” cancer, the cancer to celebrate, the pink, fluffy, let's have a race cancer
#bcsm
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Except for those of us
#advocating
for more funding for
#metastaticbc
research. We’ve all been screaming and yelling about the recurrence rate for years while being told we are
#angry
,
#bitter
and
#negative
. Now, there’s proof we were right all along.
A new study reveals the risk of breast cancer returning up to 20 years later is "higher than many of us would've thought."
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Spending my afternoon attending a funeral for a dear friend who just celebrated her 30th birthday this past July is nothing I want to do but thanks to 37yrs of bullshit, here we are.
#AmyDiedWaiting4ACure
#bcsm
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Faslodex, xgeva and port draw.
Usually straightforward, however, my port isn’t cooperating. Small clot is preventing blood return. So, here I sit for 30 mins while a medication works to clear the clot.
There better be tequila in my future!
#ThisIsMBC
#bcsm
#SixPokesInTwoDays
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