"A David vs Goliath story...part drama, part mystery, part comedy, part suspense...A brilliant read and an exceptional well-written story."
#TheCancerOlympics
My recent MRI shows that my cancer grew by 45% during the months my treatment was delayed by COVID19-related resource deficits. Respectfully asking all
#antivaxxers
and
#antimaskers
not to troll me over this sad outcome.
Today is my cancerversary. I have lived 13 years with stage IV colorectal cancer. Five surgeries, three bouts of radiation, & I have lost count of the chemos. But still alive.
I am sad to report that my cancer doctors today told me I have no further treatment options.
#TheCancerOlympics
blog describes, with an accompanying song, how I feel hearing this.
So today I went to the hospital for the bloodwork needed before chemotherapy tomorrow. The sole lab tech announces as she draws it that โeverybody in my family has
#COVID
.โ Why was she the person they sent to do the cancer patients today???
I have made it to my 60th birthday! When I was diagnosed with stage IV colorectal cancer at 48, I never thought I would see this day. Dear friends made me some birthday art!
Today my surgeon told me that many operating room nurses have been reassigned to
#COVID19
response, so surgeries are being delayed. Not just cancer surgeries - all surgeries. So my chemo will be delayed again. Thanks
#antivaxxers
- NOT
Good news at last! Dr Brendan Carr CEO
@NSHealth
will allow me to pursue private cataract surgery via
@HalifaxEyeInst
! I can save my eyesight before chemotherapy starts! Gratitude to all who have advocated on my behalf.
#NovaScotiaStrong
- NS needed this better story.
Sad cancer moment. When my cancer came back 4 years ago, my husband and I agreed that a home death for me would be our preference. Yesterday we were planning for spring cleaning pick up. โWe donโt want that stuff when we move,โ I said. โWhen I move,โ he corrected.
Hi! I'm a cancer patient. You might know me from my greatest hits including "Please include me in my own treatment decisions," "Please provide scan results ASAP" "please understand how much this impacts my whole personhood", & the unforgettable, "How long have I got left?"
Hi! I'm an oncologist. You might know me from my greatest hits including "no, I don't recommend alkaline water as your body is remarkably homeostatic and maintains your pH balance", "anaerobic glycolysis means cancer can make its own sugar", and "no, I'm not hiding the cure"
@FordJohnathan5
I once saw a video of
#Biden
comforting a boy with Down Syndrome after the boy's brother was killed in a shooting. Brought tears to my eyes. Such compassion and decency.
To all advocates who lobbied for my time-sensitive eye surgery, know that you have saved the vision of others too! Eye surgeon, now empowered to use his clinical judgment, says he can save others โway worseโ than me.
@NightShiftMD
@CTV_AvisFavaro
@carlyweeks
@tarynalgrant
Today during chemotherapy, I sat across from a patient who refused to wear a mask, jeopardizing the safety of staff and other patients. I call on
@NSHealth
to offer such a patients an alternative location for their treatments.
#COVID19
#PatientSafety
For those who lobbied to save my eyesight, yesterday when I had my follow up appointment with the eye surgeon, he said my cataract surgery โworked out perfectly.โ I CAN SEE! And chemo started last Monday.
@couragesings
@NightShiftM
@DonnaRubenstein
@sheena_burgess
I did it! Despite being derailed by
#cancer
multiple times, I made it to my natural retirement date! Goodbye Sweet โฆ
@AvrceS
โฉ and โฆโฆ
@AVRCE_NS
โฉ!
Resuming chemotherapy after a six month break that should have been only three months, if
#COVID19
- related resource deficits had not delayed it. Sadly, the cancer progressed significantly over those past 3 months. Say goodbye to my hair and eyebrows.
It was two years ago today, the
@Sunnybrook
urologist Sender Herschorn saved my QoL, performing the 13-hour pelvic reconstruction that various national and international experts told me was โimpossible.โ Ever minute of every day, I am grateful to him.
I had a 12-hour massive cancer surgery two years ago today. In hospital, someone anonymously gave me this orchid. Like me, it is still alive, and even may bloom again. Metaphor?
Touching story, advocates. The nurse who assisted at my eye surgery told me that her own son was able to get cancer-related eye injections because of our lobbying. What a privilege to help a HCP this way!
I have survived cancer for another year, allowing me to share
#NHLC2019
with Canadian healthcare hero
@picardonhealth
. Andre has promoted the
#patient
voice for years, thereby empowering every one of us.
During a zoom call today, I heard a man who had undergone 10+ years of brutal treatment for colorectal cancer. He recently had
#COVID19
. He said it was the worst experience, with the most intense suffering, of his entire life. Let that sink in.
My father flew 33 missions in a Lancaster over occupied Europe during WW2. He was just 17 when he joined. He was a navigator of the Pathfinders. I try to be as brave.
#RemembranceDay
I waited 2 years for diagnostic endoscopy despite bleeding, an immediate family history of CRC, and a positive cancer screening test. 4 doctors dismissed me as โtoo youngโ at 46. Stage 4. Guess what? They were disciplined by the College, and I successfully sued their asses.
"Nobody should be told they donโt have bowel cancer based only on their age, and referrals for further investigation should be made as soon as possible."
@theipaper
highlights our
#NeverTooYoung
findings on
#bowelcancer
patients under the age of 50
Another sad casualty of
#COVID19
- eyesight. As a rare complication of
#cancer
treatment, I have escalating nuclear cataracts in both eyes. But all eye surgeries have been cancelled indefinitely. My vision is failing fast.
One year ago today, I underwent a 13-hour reconstruction surgery with gifted
@Sunnybrook
surgeon urologist Sender Herschorn. He did was other experts said was wildly impossible - and today I am fully repaired. Thinking of him with gratitude today.
Four years ago today I was decorated by the Governor General of Canada for my work in patient advocacy. It was one of the proudest days of my life. Now that my cancer has recurred, it seems like an eternity ago.
An
#NovaScotia
teacher recently had to singlehandedly teach Grades 3, 4 & 5 in the school gym. Why? Because all the teachers at those grade levels were out sick.
#CovidIsNotOver
The study concluded that infection rates were actually 2.5 times higher for staff & nearly 6 times higher for students than what was being reported.
โThe prevalence of SARS-CoV-2 infection in school-aged children is being dramatically underestimated.โ
One day, patient rights will be considered basic civil rights. One day, people will gasp aloud to think patients could not access their own records. One day, patient voices will be integrated into policy. Wish I could live to see that day.
@AMSHealthcare
#HearingYourVoices
Tomorrow will mark my first full week back at work! Hope I can maintain my stamina when chemo starts up again this month. And I have only been out of hospital for 3 weeks.
Taking down Christmas decorations today, which is always depressing. But made worse this year, as it may be my last. Will I ever see those decorations again?
#cancer
@UHN
I had fabulous and life-sparing treatment at
@UHN
two years ago. I went there every day for 40 treatments, and my gratitude knows no bounds. Seeing the street outside Toronto General Hospital polluted by the presence of
#AntiVaxxers
breaks my heart and enrages me.
Invited to speak at
#CancerScience2019
in Spain, but cannot afford travel expenses (estimated $2000)
They waived the $500 reg fee & will not cover anything else.
When will conferences learn to hear the patient voice, we must make attendance accessible to pts?
#patientsincluded
Is it just me, or has anyone else noticed the sexism, racism, and ableism of
#antimaskers
and
#antivaxxers
? They assume because I am a woman with cancer that I am weak, but I will not be their prey. They have no idea who they are up against.
I am chuffed to announce that I won the election and will serve
#NovaScotia
psychologists on the Board of Examiners, the regulating body for the profession. Looking forward to this opportunity and challenge!
Tomorrow Canada opens its border to the United States, despite the rapidly rising
#COVID19
cases in America. Are there other Canadians as afraid as I am?
Of my six hospitalizations since my cancer diagnosis, this last one was the only time something disastrous did NOT happen. Could we be inching towards better quality?
#ColonCancer
impacts us all. Even our mighty superheroes.
A reminder:
โ No family history->screen at 45 or 50.
โ Family history->screen at 40 or earlier.
โ If symptoms at ANY AGE-> colonoscopy now
โ Donโt let
#COVID19
allow u 2 delay
Wakanda Foreverโ๐พ
#ChadwickBoseman
Today I spent all day faxing my medical records to a major Canadian hospital. Beyond inefficient! To capture corrections, I had to photograph each page, convert them back to PDF, and send with a 1950s technology. Lunacy in 2022!
#AxeTheFax
My family doctor was diagnosed with cancer at the same time my cancer recurred. His funeral was yesterday. My
#TheCancerOlympics
blog post shares my great love for him, both as a strong wise doctor and a debilitated cancer patient
โThere is no good time to have
#cancer
, but this is the worst time to have cancer given what is happening in hospitals.โ
via
@torontostar
#onhealth
Hey to all who advocated for my pandemic-cancelled eye surgery during cancer. Our message reached high places! NS healthcare leaders are now planning to provide and protect eye surgery going forward
@NightShiftMD
@couragesings
@SolidFooting
Twitter works! Within hours of tweeting my need for help,
@CTVNews
@globalhalifax
and
@globeandmail
were in contact, drawing attention to the plight of patients newly diagnosed with cancer amid this pandemic
My medical malpractice lawsuit was successful, but it took 7 years. The CMPA was hoping I would die, so they dragged it out. But in all that time, they were unable to find any doctor who would defend the horrible negligent care I received. Not one.
"Get thee behind me Satan!" I cried at the stray pizza crust I have been admitted to hospital for a bowel obstruction that refuses to resolve. No food, only fluids for the past several weeks.
@ThanksCancer
Biggest myth about cancer shown on TV? That a "positive attitude," can defeat it. I have sooo many counterparts who died despite their "positive outlook."
#myinfomyhealth
if patients had access to their own records, care would be safer. Errors could be corrected. We could prepare for medical consults. We can better advocate for care and be more engaged
As I told them,
@cbcwhitecoat
and
@NightShiftMD
don't just report on healthcare - they change healthcare. Their attention to my crisis contributed to a rapid provincial response and eyesight salvation.
I am thrilled to announce I start the workup for my eyesight-saving cataract surgery on Monday at
@HalifaxEyeInst
! Local
@KingsNSnews
published this excellent paper on my struggles, tieing them to
#TheCancerOlympics
Kudos to
@UHN
for sending out an email to all patients, asking us to avoid coming in for routine follow up appointments. I got it JUST IN TIME - I was about to hit the button to check-in for my Toronto flight. Hoping
@Sunnybrook
follows suit. Portals rock!
Today I celebrate the 3rd anniversary of a spectacular surgery done by the gifted Sender Herschorn of
@Sunnybrook
. National and international experts said my pelvic reconstruction could not be done, but he did it in 14 hours. Forever grateful.
I am proud to be a member of this group, Patients for Patient Safety Canada. We are a vetted group of harmed patients passionate about improving healthcare. We work with the system. We do it to make sense of our loss.
@patients4safety
@Patient_Safety
@KathyConWom
My Dad flew 33 Lancaster missions during WWII to defend the UK. In contrast, you wonโt wear a piece of fabric to help your community or your country. Sit down.
A private opthamologist with his own surgery has offered to help. I wouldnโt be using any
@HealthNS
resources at all. But he is forbidden under the blanket ban. Just one phone call from public health would allow him. ..
Patients under 50 are 58% more likely to be diagnosed with advanced (stage III and IV) colorectal cancer than older adults. The latter have access to screening, and the young face skepticism regarding their symptoms. Time to push for change.
#ColorectalCancerAwarenessMonth
Wishing the great Sender Herschorn, urologist and surgeon at
@Sunnybrook
, the happiest of birthdays today! He repaired me after 5 other doctors said it could not be done. Grateful every day.
Update: I am hoping to hear from the head of Opthmology at
@HealthNS
. Latest news is that they are only doing retinal surgeries, no cataracts. At my current rate, I will lose vision to drive in 6 months and all vision in 12. My last chemo was 6 months long. Out of cards?
T16: While at Sunnybrook as an inpatient, I signed up for the MyChart patient portal. It was easy to do, a simple phone call. And within 20 minutes of a blood draw, I could see for myself my own results! My sense of safety was greatly increased. Patient portals are gospel!
It is not true that cancer patients are allowed family support in
@HealthNS
Today the chemotherapy unit called me to say that despite
@CBCNS
story, no one can accompany me to chemotherapy
Coverage of my time-sensitive cataract surgery dilemma: unopposed cancer or blindness by
@globeandmail
@carlyweeks
. COVID19 restrictions result in blanket ban. Please
@HealthNS
, make an exception for me
Privileged today to speak virtually to medical students via
@MedReal9
today. I was getting chemo at the time. A real world example for them to see of the sad outcome of diagnostic malpractice.
When I first underwent
#cancer
treatment, I had a child at home. By the time of my recurrence, he was grown and gone. It was so much easier logistically to go through cancer without parenting responsibilities. My heart goes out to Moms juggling cancer and kids.
One day, I would like to share with you my own story of tackling medical error each of three ways: the College complaint process, malpractice litigation, and the official error and apology route in my province. Three paths with 3 different satisfactions and challenges.
I am sooooo honoured to be part of this high-octane panel about patient perspectives on healthcare tech. Thank you Julie Drury
@SolidFooting
for the invite!
Let me make this clear. You
#antivaxxers
chose your degree of risk. As a cancer patient, I did not. If I cannot get timely treatment, my chance of death is 100%. My treatments are delayed because healthcare resources have been deployed to save your sorry asses.
Medical Errors Exposed.
@CTVW5
investigates the uphill legal battle Canadians take on after doctors make grave mistakes. Watch โStacked Oddsโ this Saturday at 7pm.
@CA_AstroComm
I was beyond appalled by the
#WSJ
op-Ed mocking
#DrJillBiden
โs hard-earned credentials. My doctorate took years of blood, sweat, and tears. Here I am with it, haters be damned.
Chuffed to announce that our team (and yours truly) was the top
#RelayForLife
fundraiser for Kings and Lunenburg County in
#NovaScotia
! We raised nearly $7000, and I raised $5000 of that. Go Canadian
@cancersociety
!
A good story. My nephew is an EMT. They were transporting a
#COVID19
patient to hospital by ambulance. The patient died enroute, but my nephew was able to revive him before handoff to the ER. Frontline first responders rock.
Marking the 7th anniversary of my "impossible surgery", done by the unrivalled Dr. Sender Herschorn of
@Sunnybrook
. And it is his birthday today! Here we are in 2019, celebrating my return to normalcy.