
chronic illness, parotid cancer looking to get better somehow someway #fuckcancer #Dysautonomia #postviral 😥 #complex patient
Canada
Joined November 2020
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Wenddy 1 #Complex Patients😢 retweeted
262 days.
It’s been 262 days since you were airlifted to BC Children’s Hospital.
262 days since we were told, “We did everything we could, but we don’t think she’s going to make it through the night.”
Since then, I’ve watched you fight for every single one of those days.
251 days ago, you opened your eye, moved it, and shifted your leg only to be rushed back for emergency surgery that morning when hydrocephalus set in.
238 days ago, you were extubated and breathed on your own for the first time.
230 days ago, you felt the sun on your face again.
224 days ago, the cranioplasty we had planned turned into yet another emergency when an infection was discovered.
214 days ago, your EVD was finally removed.
213 days ago, you sat on the edge of the bed with a little help, and I wrapped my arms around you for the first time since the morning I left for work before any of this began.
191 days ago, the NG tube came out, and I saw your beautiful face completely clear of tubes and tape.
179 days ago, your prosthetic skull was placed. Your fifth surgery, and the one that finally stuck. After that, things slowly began to feel possible again.
145 days ago, you smiled for the first time (intentionally) while we played thumb war.
140 days ago, I wheeled you off hospital grounds for the very first time.
61 days ago, I heard your voice again.
40 days ago, we celebrated your 13th birthday at the Foo Fighters.
And today, today you’re being released.
There was never a day I stopped believing we would get here. The road ahead is still long, but this is a milestone no one thought we would reach. Maya, you are the bravest person I know. You are an inspiration to so many people. Giving up was never an option for me, and it clearly never was for you either. You refused to accept the words we heard 262 days ago when you came out of the OR. Look at you, my girl. You blew every expectation out of the water.
Thank you to the incredible nurses, doctors, and therapists who walked every step of this with us. Thank you to everyone who supported Maya and our family we could not have done this without each and every one of you.
Now it’s time to leave these hospital walls behind and keep moving forward, Maya Bear.
I love you forever and always.
—Dad ❤️
Wenddy 1 #Complex Patients😢 retweeted
Replying to @PanCAN @CanopyCancerC
This matters a lot for pancreatic cancer patients. When digestion isn't working well, food can pass through without the body getting what it needs from it — and that can quietly drive weight loss. It's worth asking your doctor or dietitian whether digestion could be part of the picture, and whether enzyme support has been checked. Thank you for putting practical guidance like this out there.
This Toronto cancer patient called 911 to request an ambulance. She said the operator told her she wasn’t ‘sick enough’ cp24.com/local/toronto/2026/…
Wenddy 1 #Complex Patients😢 retweeted
Small trial but very exciting for HER2+ leptomenigeal disease. Median survival was 32 months vs historical survival of only 4.4 months. Zap it, give trastuzumab & pertuzumab into the brain/spinal cord (intrathecal, IT), can continue systemic treatment too.
Honored to share results from INSPIRE-LM, Ph2 trial of RT followed by IT H/P. Multi-d effort between @MoffittNews @LurieCancer @huntsmancancer to improve outcomes for HER2+ LM @PeterForsyth27 @celloradonc @MoffittRadOnc
Wenddy 1 #Complex Patients😢 retweeted
6,800 patients on NL's MRI waitlist as delays exceed 600 days | PNI Atlantic News
New figures reveal stark regional differences in MRI waits, while some patients turn to private scans to avoid lengthy delays
saltwire.com/newfoundland-la…
Wenddy 1 #Complex Patients😢 retweeted
The more I see new refractive surgeries come and go in my career, the more I’m convinced we just need to stop fucking around with healthy corneas.
According to a study by Lukas Neuhann, MD, and colleagues:
Younger patients who underwent keratorefractive lenticule extraction had better efficacy and safety outcomes compared with older patients.
Read more from @JRSJournal: 🔗
vist.ly/5qe7a
#Vision #EyeCare
Wenddy 1 #Complex Patients😢 retweeted
I have been alerted to a condition that is likely affecting me along with the cancer. #Cachexia is eating my flesh more or less. Wasting.
Dr. Zhangs (@CureFinder ) book is my bible on the matter. I will be taking his book with me to my next consultation with the oncology big boss to ask for help and any clinical trial information that may be available here in Calgary.
There might be one clincal trial effort to treat patients with GI issues that fits me. It requires medication perhaps vs strategies to overcome symptoms.
I have the tell tale signs of massive weight loss and muscle loss even when my weight stays stable, nutrition is ample and I exercise almost daily. I can't hold weight or muscle to my body! I have swollen feet, low Albuminum levels, and the Lympocyte ratio is indicative of cachexia.
Studies suggest as many as 80% of #esophagael #cancer patients exhibit signs of wasting and its as deadly as the cancer itself. Many in the health profession know what Cachexia is and what it does, but the information is not getting to patients like myself. I really appreciate and promote Dr. Zhangs book and lifeswork to help inform others!
Swoolen feet and limbs is another sign of Cachexia!
The link to his book that I purchased is available in paperback or kindle versions. Highly recommend this plain language research driven and compassionate outreach from Dr. Zhang if you or a loved one has cancer. It affects a lot of cancer patients and we never heard of it!
📚 amazon.com/dp/B0HKWZLF7P
Wenddy 1 #Complex Patients😢 retweeted
In medical school, we are taught a golden rule: "When you hear hoofbeats, think horses, not zebras." It is a reminder to look for the common explanation before the exotic one. But after decades in cardiology, I’ve learned that if a patient is still suffering after the "horses" have been ruled out, a doctor must have the courage—and the curiosity—to go hunting for the zebra.
Sarah was a thirty-four-year-old marathon runner and a devoted mother who came to me after six months of being told she was "fine." She had been bounced from one specialist to another, each one pointing to her normal EKG and standard blood tests as proof that her crushing fatigue and racing heart were simply the result of "new mom stress." By the time she reached my office, she didn't just look tired; she looked invisible, as if the medical system had stopped seeing the woman and only saw the data.
Instead of re-reading the normal test results that had already failed her, I asked Sarah to walk me through her life. We talked about her training and her family, eventually landing on a backpacking trip she took to the Mendoza province of rural Argentina. She described staying in a charming, rustic cottage made of sun-dried mud bricks. She mentioned waking up one morning with a strangely swollen, purple eyelid that she assumed was a simple spider bite.
As she spoke, a memory surfaced from a biography I had read years ago about Charles Darwin. Most people know Darwin for his theories on evolution, but medical historians have long puzzled over the mysterious, debilitating illness that plagued him for decades after he returned from his voyage on the HMS Beagle. Darwin had written in his journals about being bitten by the "great black bug of the Pampas" while sleeping in mud-walled huts in South America. He spent the rest of his life suffering from heart palpitations and exhaustion that the Victorian doctors of his time could never explain.
I realized then that Sarah wasn't suffering from stress; she was likely hosting the same "silent killer" that may have haunted Darwin: Chagas Disease.
The "Kissing Bug" lives in the cracks of those mud-brick walls. It bites its victims—often near the eyes or mouth—while they sleep, passing a parasite called Trypanosoma cruzi into the blood. The danger of Chagas is that the initial symptoms disappear quickly, but the parasite can hide in the body for years, slowly weaving itself into the muscle and electrical "wiring" of the heart.
To confirm this, I moved beyond the standard tests. I ordered a specialized "Strain Rate" ultrasound, which doesn't just look at whether the heart is pumping, but at how the individual muscle fibers are stretching. We saw that while her heart looked strong to the naked eye, the fibers were "stuttering," a sign of early parasite-induced scarring. A specific blood test for the parasite's antibodies confirmed the diagnosis.
Treatment required a difficult, sixty-day course of anti-parasitic medication to stop the infection, paired with a protective heart regimen to keep her electrical system stable while the inflammation settled. Because we caught it before her heart was physically damaged or enlarged, the recovery was a success.
Months later, Sarah returned to my office, her vibrant energy restored. She brought me a leather-bound copy of The Voyage of the Beagle with a note tucked inside. She wrote that while other doctors had looked at her charts, I had looked at her. This case remains a vital reminder for my memoir: in a world of high-tech scans and AI, the most sophisticated diagnostic tool we possess is still the human story. When we truly listen, we don't just find the disease—we find the patient.
Good morning.
Wenddy 1 #Complex Patients😢 retweeted
G7 country.
Why some Canadians are using their savings, GoFundMe to pay for private surgeries
cbc.ca/radio/whitecoat/canad…
Wenddy 1 #Complex Patients😢 retweeted
Nursing homes are never up to code, never meet residents needs and it's getting worse.
Ford needs to setup and fix healthcare in Ontario for our aging population.
Honestly, no wonder MAiD is getting used when the healthcare system sucks.
Who wants to die in these nightmare homes?
Internal records show nearly 300 Ontario long-term care homes fail to meet the promised four hours of daily resident care. thestar.com/news/investigati…
Wenddy 1 #Complex Patients😢 retweeted
Internal records show nearly 300 Ontario long-term care homes fail to meet the promised four hours of daily resident care. thestar.com/news/investigati…
🎯
I don’t really understand this. There is a science to crowding and solutions, both mitigative and definitive have been articulated and are well understood. The only conclusion can be that governments the world over either don’t give a shit about the unnecessary suffering and death or collectively are science deniers.
Wenddy 1 #Complex Patients😢 retweeted
Manitoban denied out-of-province care for rare condition says he's 'tortured every single day'
Tomas Ponzilius, who lives with Ehlers-Danlos syndrome, says he's considered medically assisted death
cbc.ca/news/canada/manitoba/…
Wenddy 1 #Complex Patients😢 retweeted
My MBC started out strongly ER/PR+, and while we have new treatments, we need more options. And that takes research. Please donate to @metavivor
Day 24 - Hormone Positive Breast Cancer (HR+)
HR+ breast cancer treatments can be effective but often cause serious side effects. We need better, less toxic treatments that not only fight the cancer but protect quality of life.
Don’t ignore stage IV.
#metavivor #METober
Wenddy 1 #Complex Patients😢 retweeted
Dr. Zhang, PhD
@CureFinder 👇
My book is free on Kindle this weekend. When the Body Turns Against Itself: A Patient's Guide to Cancer Cachexia. If someone you love is losing weight to cancer and no one has explained why, I wrote this for them. amazon.com/dp/B0HKWZLF7P
Dr. Zhang made me cry because he devoted his life to saving people from cancer. Im a sentimental old man who likes to shine a light on compassion. ❤️🩹🔦
I purchased the paperback out of gratitude for his reply to me to start me on a road to knowledge. I will greedily download the Kindle too. I found out I can use Kindle books on my Samsung notebook with an app.
Replying to @DeanJC420
Thank you for reading — and for the kind words. I hope the book helps you make sense of what's happening, and please pass it along to any family who might need it.
Wenddy 1 #Complex Patients😢 retweeted
Day 24 - Hormone Positive Breast Cancer (HR+)
HR+ breast cancer treatments can be effective but often cause serious side effects. We need better, less toxic treatments that not only fight the cancer but protect quality of life.
Don’t ignore stage IV.
#metavivor #METober
Wenddy 1 #Complex Patients😢 retweeted
The mets in my bones (at least most of them) are ER+.
The mets in my liver are triple negative.
While there have been major advances for HER2+ and ER+ MBC, there haven’t been as many for TNBC.
We need research. Please donate to @metavivor
Day 23 - Triple Negative Breast Cancer (TNBC)
Triple negative breast cancer (TNBC) makes up about 15% of breast cancers.
We need safer, more effective treatments—and that means more metastatic research.
Don’t ignore stage IV.
#metavivor #METober
Wenddy 1 #Complex Patients😢 retweeted
I recently had a young mother in my office with an oncologic neurologic emergency.
We diagnosed new brain metastases on a CT scan.
I called her oncologist personally with the update. She told me, "She's not getting treated, she's just doing those vitamin C infusions."
In preparation for the ER, I called ahead to notify them about her. I requested to talk to a physician in the ER three times and was told, "We don't do that here."
This was a hospital I used to work at.
My patient was admitted to the ICU for 3 days, and not one person called me one time.
Let's get into how this entire story went sideways.
Wenddy 1 #Complex Patients😢 retweeted
Potentially practice-changing results from the BRIDGET trial for HER2+ #MetastaticBreastCancer! Treating isolated brain mets progression with SRS + adding tucatinib to ongoing systemic therapy, rather than switching an otherwise effective treatment regimen. Promising findings for #BCBM!
@OncoAlert #ESMO2026 #bcsm
Isolated brain progression in HER2+ MBC shouldn’t mean switching everything 🧠
BRIDGET: SRS + tucatinib added to ongoing HP/T-DM1 → 59% free of intracranial progression at 18 mo, vs a historical median of 5 mo.
Keep what works, treat the brain. Practice-informing 🔥 To be Presented at #ESMO26 #OncoAlert4SIGHT




























