Julie Rohr ( ͡° ͜ʖ ͡ °) In Memoriam
@JulieRohrYEG
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Thank you all so much for your positive response to my story. Thanks especially to
@TravisMcEwanCBC
and
@korysiegers
for prompting me and helping me to share it. It’s a bit unnerving to share such an intimate part of our lives, but you all are so kind.
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It is with great sadness that we, Julie’s family, must inform all of you that Julie has traded her earthly clothing for that of the eternal universe. She has passed from this life to the next, and this is what she wanted us to tell you. (1)
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Hi, Alberta 🧵
I’m an end-stage cancer patient, dealing w some of the most difficult decisions I’ll ever make
I have to get my lung drained in order to breathe. Doc wants me to come to a hospital ER to do the procedure. But hospital ER’s have Covid outbreaks.
#abhealth
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I JUST SAW THIS AND I AM SCREAMING
😭😭🙌🏼🙌🏼❤️❤️
@danjlevy
& everyone at
@SchittsCreek
- your show carried me through some dark, dark nights dealing with this disease, and laughter was my medicine. Now, at the end, it still lifts and delights me.
THANK YOU for this gift!
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I am trapped. If I get delta these lungs are done for. They wouldn’t even treat, based on my condition.
Do you see how this WORKS??
Covid vaccine deniers are getting my bed.
The one I need to survive a little longer with my children. And puppy.
Here they are. 2/
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“This is goodbye for now. I leave you with some of my favourite poems, “Epitaph,” by Merrit Malloy, & words of Mary Oliver. Be good to each other. Be kind to yourselves. May you open your heart to love even though it means inevitable pain.” (9)
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Also hi hello am I dreaming?
@chantalkreviaz
just had a 20 minute Facetime with my husband & I, serenading us with her cover of Leaving on a Jet Plane (his fave) & Feels Like Home (my fave.)
There were tears. Thank you, Chantal- that was incredibly beautiful & encouraging. ❤️
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“Allow yourself to contemplate the existence of God. Choose love over fear, every time. Thank you all for being part of my life here.” (10)
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Do you have ANY clue how your lack of empathy, ability or any sort of heart has led to a complete breakdown of our system?
OWN IT. If I die because I can’t get this procedure, I want my story to be read in the Legislative Assembly. I want you to apologize to my family. 4/
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And now, because my blood pressure was off the charts to begin with, I have to stop for the night.
PLEASE UNDERSTAND EVERY ACTION HAS A CONSEQUENCE. Own it. The stampede was a stupid failure, the start of the fourth wave.
Do better. For those who will live on. Do better.
-fin
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RICK MERCER 😭
Oh my goodness thank you for this!!
@rickmercer
. Yes, my friends have turned the Twitterverse upside down, indeed 😂😂 They’re amazing.
Thank you for taking the time to share.
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These are my parents. They are likely going to have to see their daughter go before them. Look, I know you didn’t cause Covid or cancer. But you certainly mishandled it SO BADLY that now people like me may die sooner than we have to.
You have screwed up
#AbHealth
. 5/
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“Cry for a time, however long that may be. Feel the grief you feel, as I allowed myself to do. Lean into the pain of goodbye. But eventually, lift your face towards the sun and allow joyful memories to be the lingering thought. Both and.” (7)
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And a message from
@VancityReynolds
- oh, my goodness gracious my heart feels absolutely ready to explode.
I am so overwhelmed and honoured, thank you for your kindness in sending this message. Last night was one of the hardest in my life and today is just coming up roses! 😭🙌🏼
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Her final wishes to us were to leave you with these words.
“Friends, it’s been a wonderful life. I leave with some sadness, of course; I wish I could have stayed with you much longer. I had so many memories to make, so much I still wanted to do, say & experience.” (4)
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I probably watched this video from
@brittlestar
five times to laugh and laugh about your thoughts on Dan Levy & Ryan Reynolds 😂 There’s no competition, sir, you’re the Internet’s favourite Dad!
Thank you for making me laugh, with your comedy AND with this video. 🙏🏼
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“But I leave this earthly world with no regrets- I have told the ones I love how much I love them, I have opened my heart to life and many of you have opened your hearts back to me in turn. My life experience has been rich and beauty-filled.” (5)
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All I can do at this point is have tears of joy & be slightly overwhelmed at all of these videos & messages. Hundreds.
This one is from man, the myth, the legend: Johnny Rose (Eugene Levy)
Thank you for this, Mr. Levy. Your encouraging words make hospice more tolerable.
@JulieRohrYEG
more ♥️♥️ coming to you from
@Realeugenelevy
@SchittsCreek
Thank you
@karenrobinson01
#welovejulierohr
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“I hope I brought you joy. I hope I enriched your life experience. I hope my story inspired you to reach for strength & love even on the hardest, most painful days. Every day is a gift. May yours be full of beauty and wonder.” (8)
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Thank you, each one of you, for being a part of her journey. So many of you went from being Twitter friends to real-life friends, and she was so grateful for that, for you, for the experience. She cherished your support and friendship. (2)
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Look, I’m angry. I’m not one who lives with a victim mentality, pointing fingers in blame at others. It doesn’t help me to do that. But in this case?
The UCP needs to to be held accountable for this colossal failure to govern & the colossal amount of harm you’ve done here. 6/
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The sidewalk messages I saw as I left for hospice yesterday. 😭
I’m cozy here this morning, it’s lovely here. This is my window- and the first meal they brought me was a delicious fresh green smoothie. As if they already knew me. I will get to have plenty of outings home, too.🙏🏼
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Julie Rohr’s family would like to sincerely thank each and every person who has reached out with love, caring gestures, and offers of support during this challenging time. At some point in the future, there will be a celebration of Julie’s life when it is appropriate. (1)
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“Thank you for your support in the past years. My family & I have been incredibly grateful for the outpouring of love and encouragement from so many of you. I often said it lifted me above the pain and suffering of the disease I lived with.” (6)
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We will eventually be posting detail of her memorial service, which will be open for you to attend in person or via livestream. She made detailed plans for her life’s final party, which will not be a surprise to anyone who knew her (3)
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Dear
@cmcdavid97
: you couldn’t have known (because I was too tongue-tied to tell you) that I had just been at the cross cancer for scans before I ran into you & you agreed to snap this photo with me today. Thank you! My kids, hubby & I are HUGE
#Oilers
fans, you made my day.
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Well, folks- it’s a celebratory day for me. Five years ago today, I sat in shock in my doctor’s office as she read to me the word “Leiomyosarcoma.” I was told the median survival rate was 12-18 months.
I’m not out of the woods yet, but I’m still HERE, five years later. 😭🙌🏼
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Allow me clarify:
I don’t just need lung drained (I could do that elsewhere) but a pleurX drain actually inserted, harder to do outside hospital.
(I’m not dying right now due to this, but these end stage decisions with a screwed up health care system can be/are disastrous.)
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AAAAAAHHHHH
@karenrobinson01
!! The one and only Ronnie!!
I squealed- you just brought me SO MUCH JOY. And yes, my friends are unreal. I cannot even believe this day. I’m sitting in hospice just struggling to walk ten feet but TODAY? I’m flying 🦋
Thank you thank you!!
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Sepsis seems to be spreading,
Emergency surgery.
See you on the other side of this.
All my love.
Hold your loved ones tight.
Be kind and brave.
Be strong and vulnerable.
Choose love over fear.
❤️
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@TitaniumGirl16
@Sarah7788
@tocdorje
@TheRealCDK1
Ah, folks. I’m watching your conversation & tearing up over here. I’m living w stage 4 cancer & my boys (10 & 12) care for me so sweetly. I pray daily that they have grace to survive & thrive even after I go. Your hearts are so beautiful- thank you for loving your Mamas thru it.
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I’m headed to the cross cancer for scan results. Last night I said to my husband “won’t it be amazing when I sit down with my oncologist and he tells me, inexplicably, that they can’t see any cancer anywhere in my body?” 😉🙌🏼
Though unlikely, that’s my constant hope & prayer.🙏
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Morning, everyone.
checking in- trying to catch up on replies & thank you’s; the ongoing & increasing exhaustion makes this difficult but please know I am reading (or having read to me) all your many kind messages of support.
Thank you so much. 🙏🏼
Some front-porch flowers 😍
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YOU GUYS. 😭😭❤️❤️
The most incredible thing just happened. Eleven (twelve?) of my neighbour ladies just SHOWED UP AT MY WINDOW & performed a CHOREOGRAPHED DANCE for me!! 🙌🏼 Complete with “We Love Julie” letters on their backs at the end.
I’ll post video when I stop crying 😭
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She walks... ouch- but she’s walking!
Emergency surgery through abdomen to small intestine happened early this morning and they’re already making me walk.
I adore these fabulous health care workers that keep me going. ❤️ (Plus my cousin back there with her photobomb face 😂)
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🤭🤭
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I’m totally blown away with these loving videos. I can’t even say what they mean to me.
Glennon, “Love Warrior” was an important book in my life; I got a signed copy and read it in a day straight, flying to NYC. (Bawling.) Abby, I’m a big soccer fan/mom, too!
Thank you both.
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He’s 11, and every year getting harder and harder to convince him a matching costume with mom is cool, but I managed a 2020 version, with his permission to post 👍🏻😉 The scariest costumes we could imagine this year...
Have fun out there today, folks!
#HappyHalloween
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Yep. True story.
Thank you for this, Connor and oilers organization. 🙌🏼 I’m filled with gratitude.
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Hi
@630CHED
: whatever the reason behind
@ryanjespersen
no longer being a talk show host with your station- it was a poor choice on your end. You’re going to let Danielle Smith continue to blather her nonsense and let this guy go? Only to your own detriment.
End of an era.
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Oh dear goodness.
Septic shock : solved. 1cm hole blown through my small intestine due to ulcer.
Made it.
Thanks, pals: I’m exhausted so I’ll be drifting off here, but wanted to thank all of you who commented & shared. Now the slow crawl back out of post-surgery haze 🙌🏼😴.
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Taking “Saturday Night Fever” a little too literally this weekend 😬
Grateful for a partner who is here through all of it. 🙏🏼
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Friends- today I went in to my oncologist for results of a bone scan, on which they previously saw tumours on my spinal cord and iliac bone. I don’t know how, and I’m at a bit of a loss for words, but- the bone scan was clear. They can’t see any active cancer in my bones. 😭💫
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Just a reminder that your precautions- like masks & social distancing- are protecting folks like me with compromised immune systems. A normal white blood cell count is between 4-11, my morning bloodwork showed mine is at 1.
Thank you for caring for those of us at higher risk.❤️
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This one made me cry.
I was over the MOON that
@OmarMouallem
had arranged for
@petermansbridge
to be at our
@PandemicSchool
“grad,” but this personal message means so much to me.
Thank you ever so much!!
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@shazmamithani
@drdagly
Honestly? You two are angels 😭 my palliative doc (who read my tweets 😂) is trying to get me in with an interventional pulmonologist tomorrow, but if I can just pop in and out that changes the game. I’ll talk with him again in the morning.
You’re seriously incredible humans.
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I am Albertan.
I stand with our physicians & nurses, because they’ve saved my life many times over.
I stand with our teachers, because they educate my children.
I stand with the vulnerable.
I stand for honesty & transparency.
I stand opposed to the
#UCP
government.
#IAmAlbertan
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The outpouring of responses to my hospital post yesterday have been *totally* overwhelming. Some of you have asked how it has resolved at this point. Thanks to several doctors on my care team who went above & beyond on a weekend, I was able to get to ER, bypass waiting room, 1/
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I got the call... the second set of eyes agrees.
I’M IN!I get to be part of this clinical trial!! 😭❤️🙏
Not to put too fine a point on it, not to get my hopes too high, but this drug has the potential to save my life.
I’m in absolute happy shock right now. I begin mid-August.
... and the test results still have to "go through one more set of eyes" but they think, given the initial testing, that I have the genetic abnormality that will allow me to be eligible for this study. 😭🙌🏻🙏🏻
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Oh good gracious.
A big 👋🏼 to my new visitors here. If you’ve come here because you believe I’m some sage guru with wisdom to dispense to all, I’d like to introduce you to our teen boys who may disagree. 😬
We are not perfect people, we simply try to live each day fully. 🙏🏼
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Some people are pretty chill about their birthdays- like, they don’t make a big deal about it. Sometimes people even hate their own birthdays.
Me? Today’s my birthday, it’s a very big deal, and I have exactly *zero* chill about it. 😉🥳
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Happy Birthday to me!
I have loved birthdays my whole life- I’m generally a pretty excitable person and love parties- but NOW, each one is a special gift. I’m so, so grateful to be alive. We celebrate accordingly around here!
🙌🏼❤️🥳
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Julie's family is grateful for this tribute, and the legacy she leaves.
#welovejulierohr
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I just found this thread, and people-
😭😭😭😭😭😭😭😭😭
I don’t have words. Oh my gosh.
I’m reading this in a hospital bed waiting for a lung to be drained and ya’ll just turned me into a total puddle.
Thank you. 🙏🏼
Julie Rohr has given so much hope, positivity and love to the city of Edmonton and she needs some in return. Share your favourite thing about this wonderful woman.
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I’d also like to point out that I wore a mask from 9:30 am until 2:15 pm. Even I, with multiple tumours on my lungs, still had an oxygen saturation level of 99% at 2:15.
Just putting that out there.
(Kindly keep your mask conspiracy theories out of my general vicinity.)
At the Cross Cancer in a 4 hour recovery; just had 4 deep needles into my liver for a baseline biopsy. Not my favourite procedure, but required for the trial. The staff here is so amazing. I’m grateful to live in a country where I don’t have to go bankrupt for medical care. 🇨🇦
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Not going to lie; had a brutal morning, physically. I needed to call my parents for help. Symptoms kicking my butt. But I wouldn’t miss #
#yegclimatestrike
for anything. Almost at the ledge now.
#GretaInAlberta
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Well, today wasn’t the day for me to hear the word “remission,” but scans were ok. Not the best, not the worst. Some stability in liver & spleen, a small amount of tumour growth in lungs.
I’ll keep on keeping on, continuing to hope for health! Thanks for believing with me.❤️😊
I’m headed to the cross cancer for scan results. Last night I said to my husband “won’t it be amazing when I sit down with my oncologist and he tells me, inexplicably, that they can’t see any cancer anywhere in my body?” 😉🙌🏼
Though unlikely, that’s my constant hope & prayer.🙏
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Oh, Twitter friends.
Please keep hoping with me this is just a small twist & not progressive disease. The surgeon who just saw me seemed awfully serious, indicating surgery might be needed, and I’m very, very weak from chemo infusions.
I walk forward with peace. Walk with me?
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Would you like to hear a good-news story? Meet Emad. His family came to
#yeg
from Syria via Jordan 1.5 years ago. When he arrived here, he began to talk about opening a shop for freshly-roasted nuts and coffee. We, his sponsor group, were trying to put the brakes on.
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I don’t want to be a “vaxhole” by posting, but I’ve been severely immunocompromised for five years, & I’ve never been so grateful to have an injection in my entire life.
(The vaccine rollout is a total wild west out here. My heart goes out to everyone waiting. Gong show.)
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It’s your girl, just saying hey with NO NOSE TUBES.🙌🏼 Yep, this means I’m sipping water, broths, juices today!
Had a wee visit from this guy this afternoon. Thank you so much for sharing in our joy. Still watching cardiac and WBC complications, but on the right track. GRATEFUL.
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My boy just used some money he had saved up to buy his pal a (refurbished) xbox for his birthday (with his parents' permission).
I talked it over quite a bit with him ("are you SURE? It's pricey.") He said 'it's a gift to ME too, because then we can play together online!'
😭❤️
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A high school friend of mine lost her husband to cancer just months ago. She’s now raising their 4 young kids alone. She went into Marshalls the other day, saw this blanket & put into her cart, but decided it was too pricey & put it back.
A woman watching bought it for her.😭❤️
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@TheRealCDK1
@TitaniumGirl16
@Sarah7788
@tocdorje
I believe it! I am a huge believer in miracles. 💫🙏 I’m living with a rare and aggressive cancer but the trick is just to hang on until tomorrow, because research is so close. Thank you for your kind words. ❤️
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Recently I posted about health issues. Shortly after I realized I’d missed a call from
@AmarjeetSohiYEG
. “Oh, from the campaign” I thought- then saw this text. 😭🙏🏼
You already had my vote, sir, but I am moved, again, by the compassion you &
@SarbjeetSohi2
have shown. Thank you.
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I cannot stop thinking about where Alberta would be right now- not just covid but overall- if we still had
@RachelNotley
in charge. It is a thought I have at least once a day now, usually more.
We needed her so badly, but many Albertans couldn’t see it. I wonder if they do now.
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Ok ya'll are going to love this: my friends have a toddler who loves to play with the remote control. Recently, he got into the Shaw pay-per-view and downloaded a movie.
Shaw had some promotion where one person who downloaded THAT movie won a trip for two to Tokyo.
They won 😂
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With his permission, I’d like to publicly recognize the surgeon who, almost two weeks ago, took me into emergency surgery for ruptured intestine and septic shock.
He saved my life.
@mjkimmd
, you are a gentleman and on my list of personal heroes. Thank you. Forever grateful.
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President Biden:
Many of us in Alberta are mortified by the infantile behaviour of our Premier. We hope that you & our PM Trudeau have a good working relationship going forward.
Just ignore Kenney’s tantrums. They’re embarrassing, and we’re so sorry. 😳
Also, congratulations!
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Well, looks like this is happening... 😳
Thank you for the invitation,
@ryanjespersen
. I’ve been blown away by how this story resonates with the public. Looking forward to 9am!
#RealTalkRJ
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(Is this real life?)
(Am I hallucinating from pain meds?)
Thank you for the support and prayers,
@charlesadler
. It means more than I can say. I’m in the thick of things right now and this just lifts me. 🙏🏼
Thank you Dr. Markland for responding to the most compelling Canadian story on Twitter right now. We are all rooting for
@JulieRohrYEG
. Please follow her, offer your best thoughts, and if you pray, please pray for her on this Sunday, September 5th, 2021.
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A beautiful treasure I just found in my mailbox, including a heartfelt card from creator
@slav_metalurges
. 🙏🏼🙏🏼🙏🏼
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Our dinner practice is to hand out a stone at every plate, go around the table, say what we're thankful for & return our stone to the bowl.
At dinner tonight our little guy softly said "I'm thankful you're still here with us, Mom."
(Yes, I may have had glistening eyes. ❤️)
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New year, new profile pic. I finally have some hair on my head (and hopefully no chemo this year) so I figured I’d better update my look here so we can say hi when we meet out in the wilds of real life. (You know, when we start... going outside again one day.)
So- hiiiii 👋🏼
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When we got to the top, he put me down. I started to sob. I hugged his neck & cried with the humility, vulnerability & love I experienced in that moment.
This journey is freaking hard, but don’t let anyone tell you it isn’t beautiful. There’s beauty there if you look.
-fin
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Today was an emotional one for this mama, on a lot of levels.
Congratulations, little man, on your first day of grade 8. I wish to God I could protect you from the system you’re facing & other life traumas. 💔 All I can do, as a good mama, is give you strong roots & wings.
xo
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Being in the hospital right now gives me a chance to apologize, in person, to every health care worker I interact with about how horrific this government is.
I just spoke with a nurse and said “I’m really sorry about how terribly this government is treating you.” 1/
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Ahhhhhhhh I just texted my husband to let him know they’ve moved me- again- because my recovery is progressing. I was so excited to have a room “with a view” and shared it. Look what he sent back 😭😭😭 How did I ever find this gem of a man?! ❤️ Oh, my heart. I loves him.
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Oh hi it’s 1 am and I’m just over here googling “cancer remission” YouTube videos and blog posts to remind myself that remissions do happen, sometimes, even when a cancer diagnosis is deemed ‘incurable.’
(Every once in a while, on hard days, this is how I cope with my journey.)
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What happens when you take a Twitter break for family reasons:
This is me with all my nieces and nephews in the mountains and I think my heart is going to explode with happiness. My whole family has surrounded me with love. We’re all together and I couldn’t be happier.
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I can't stop laughing... nicely done,
@Albert_Nobbs
. I hope the sky palace diners have to walk right past you today.
#AbPoli
#AbLeg
#DropTheUCP
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Yiiikes it’s getting real- my docs just stopped by the room and they want me OUT OF HERE NOW, they’re expected COVID patients on this ward later today and don’t want me anywhere in this hospital any longer. 😳 They’re working on my release papers...
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Friends: docs tell me I have to rest, mentally, so that may mean a day or few off Twitter: please know I’ve read your outpouring of support, I’m so grateful. I’ll fill you all in when my body is stronger.
You all have lifted me through this experience. Thank you, thank you. ❤️
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Exactly one year ago today, I was enjoying brunch at OEB with this beauty, my dear friend Amanda. (Remember restaurants?) Near the end of the meal, I began to experience intense abdominal cramping. The pain was unreal. I excused myself & almost passed out in the bathroom. 1/
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Hair today, gone tomorrow. You know, after having long hair for almost all of my 35 years, it was certainly a surreal experience to see the locks falling to the ground. But once it was all said and done- not so terrible after all. I may have cancer, but it doesn’t have me. 💪🏻
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One side effect of living with cancer they don’t tell you about is when you’re driving, listening to Brandi Carlile’s ‘Wherever Is Your Heart,” seeing a double rainbow & bursting into full sobs of gratitude to just be alive in this moment.
They don’t warn you about that ❤️
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My grade 7 child just had to write a report on a 'Canadian leader' for school. He picked Jason Kenney, but when he had to list which 'qualities' the leader has & how they 'inspire' others, he couldn't think of any. He asked me for help.
We ended up changing to Tommy Douglas.
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July 16th: 10 months since Julie passed away. Suggested homework in her honour: If it's sunny outside, lift your fact towards the sun. If it rains, laugh, (bonus points - do a little dance!)
Whatever the weather - If you love someone, tell them.
We love you forever, Julie 💜
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I’m a frequent
#AbHealth
user. I have important CT & MRI scans booked for Wednesday. Does the
#AUPEstrike
affect this? Maybe. I might not get my scans.
Am I mad? At UCP, sure. But not at
#AbDocs4patients
. I’ll gladly march the streets with them on Wednesday instead. ✊🏼
#AbPoli
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WHAAAAATTTT?
The things I miss when I’m sleeping 😩
Thank you for the support!
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571
What a rollercoaster.
Five years ago I was told this diagnosis was one in one million. That the average survival rate was 12-18 months. "Get your papers in order."
Four years ago I was told I had less than 20% chance of making it to 2020.
Still kicking. Grateful beyond words.
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Funny,
@MattWolfAb
: I don’t recall the
#UCP
running on this platform?
-undermining & demonizing Alberta physicians, attempting to privatize health care system, driving doctors elsewhere
-harassing & demeaning teachers, firing 25,000 educational staff IN A WEEKEND EMAIL
#abPoli
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So it looks like the CT scan is showing a bowel obstruction causing the immense pain. They don’t believe it’s a tumour due to how fast the pain came on, but rather a “twist.” Starting antibiotics now to prevent sepsis. I’d love your thoughts and prayers to avoid surgery. 🙏❤️
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