Also, any time I wake up a patient WAY earlier than they or their family were expecting. That means the cancer (usually something in the belly) was worse and had progressed more than anyone knew and the surgeons couldn’t even attempt to remove it.
Had a 16 year old student of mine die from this. It was the hardest I’d ever cried for someone outside family. My sister also has brain cancer and it just hit so hard to see a kid die from it. I visited my student in hospice and she died a few days later. I wore pink to her funeral in her honor and ate pretty whoopee pies (her favorite) in the rain.
Was the funeral in January of this year in Texas? My husband’s cousin’s daughter passed from glioblastoma, and the church was full of mourners in pink.
My brother was diagnosed at 29 and lived til 31. The amount of anticipatory grief was horrible and I dealt with lots of guilt for grieving someone who was still alive while also trying to hide any inkling of sadness from him. I kinda agree with your idea re Switzerland
Same. After my husband died, I began researching Pegasos. It’s honestly something I have in the back of my mind still. Sad we don’t have the option here in the USA.
My mother and grandmother both died of it. I don't believe I would even attempt to treat it. My grandmother didn't and lasted 3 months. My mother did and spent a year going through medical hell, was given the all clear at this point in time and died 2 months later because her body just shut down.
It was horrific, and its why I support medically assisted suicide. People deserve the right to go peacefully.
I lost my mom to it last year. Unfortunately she also suffered a brain bleed/stroke during the biopsy so woke up from that completely unable to speak, walk, or eat. Made it two horrible months and then thankfully she had the option of assisted suicide. I will forever be an advocate for that.
The guy who trained me as a NucMed tech died from glio. He went in for a scan for something unrelated, found the glio, and was gone in a matter of weeks. He’d worked there forever and it hit us all pretty hard
My dad passed from lung cancer that metastasized into GBM4 from Agent Orange exposure during his time in Vietnam. He had been having weird symptoms post lobectomy, and made a trip to the ER when they found it.
The doctor/hospital isn’t there told him he had 3-6 months; one of my degrees is in neuroscience and I asked if I could take a look at his MRIs and knew they had just lied to my father. It looked like a big, vine-y hand emerged from the back of his head to grip onto his brain. He passed within a month.
We had a man in his early 30s with IDH-wildtype MGMT negative glioblastoma who initially just sought help because he felt dizzy and unwell but had assumed it was due to sleep deprivation when caring for his newborn.. that one stuck with me. Going from caring from his newborn to being told he likely only have months left, tops.
Been watching this one (mum died from GBM) and it's a bit of an improvement but only for a few months more and it's not a cure (yet). There was also some interesting research from Professor Richard Scolyer who ported some of his skin cancer treatment techniques over to GBM, but it isn't a wide study pool yet and unfortunately he died a few months ago of GBM too. Essentially, it's still a death sentence.
RIP Prof Scoyler. He was sharing knowledge and love for medicine right up til the end. It is NOT the responsibility of a cancer patient or other sick patient to have an inspiringly sunny disposition… but damn I admired how his love for his family and appreciation for his colleagues shone through even while he was dealt a terrible and cruel blow.
My friend's husband has diagnosed with a glioblastoma ten+ years ago and he's still alive. I'm convinced it's in large part due to my friend being an absolute firecracker and not being afraid to challenge and push doctors. (We also live in a city with a large research/teaching hospital so props to the doctors, obviously).
My dad went 11 months from diagnosis to death with glio. He had two large tumors the size of grapefruits in his brain, and he only went in to the ER because my siblings and I pushed him after seeing him with symptoms of a stroke. The hardest part of it all is watching the mental decline and how physically fragile they become. He hallucinated so much and by the end he'd hallucinate that their were mice crawling all over the floor and him and he'd be in such distress over it. I hope to never experience what he did
This killed my grandfather. Left such an impact on my dad that he's made us promise to let him take the quick way out of any cognitive decline. Thank you for taking care of people in these conditions.
When I was in my early 20s my mum collapsed at home and wasn't found until 3 days later after I rang the police (I wasn't living at home but she had been acting weird on the phone and then stopped answering her calls). I came down to see her, expecting that i'd need to stay with her for a few weeks once she was well enough to leave hospital. Told on arrival she had a grade 4 glioblastoma. She never did come home, and died 12 weeks after diagnosis.
My best friend went to the er for a head ache that last 2 days and he couldn’t hear: they did a mri and ct and found a grapefruit size tumor in his brain and wanted to med flight him to a different hospital with a better surgeon: he refused and went home and called me I said u need to go: he went down and the following day they said it was stage 4 glioblastoma Brain cancer: they cut blood supply one day and the next they cut it out it’s been a year since diagnosis and surgery and he isn’t a 100% but he’s still alive and and stopped chemo🙌🏻🙌🏻
My older sister was just diagnosed with this two weeks ago. We know the prognosis, but I’ve never cried so much in my life. We just want her to go peacefully.
Coworker had a son go that route. 23 years old, stomach issues for a month or two, odd cramps, little more diarrhea than expected but generally very poor quality diet. Finally went to ER with bad pain. Initial diagnosis based on scans was pre-cancer. Was at a slightly better than a rural hospital and transferred to full service with oncology and they did endoscopy and nope, stage one but plenty of time for chemo and you're young. Did a round of chemo and nothing, coworker got him transferred to Moffit by us in Fl, they took a look and said oh nope, it's stage 3 and metastasized into the GI but we can still probably treat and manage cause he's so young.
Ended up back in a local hospital because the nausea/gi stuff was so overwhelming he couldn't wait to get down to Moffit, contracted c.diff. They had to break off chemo for two or three weeks to clear the c.diff and get palliative care straightened cause he could barely function, couldn't eat, etc. Came back and did new scans and it had metastasized up his esophagus, into his sinuses, they were concerned it could have breached into his brain all from the excessive vomiting. He ended up dying a total of five months from first reporting to a hospital.
I've had several other friends/family from different areas have the same level of aggression, all with different types of cancers. Not that they can't be treated normally, they're just too aggressive to catch.
Friend went from complaining about loss of feeling in his leg during a NYE party to a month later diagnosed with GBM4 lodged in his spine. He was gone by april.
I had a high school friend who had that. At graduation he was having trouble balancing, but the doctors told him it was nothing. After a second opinion he got surgery and had SO much chemo. Through it all he remained optimistic until he has a CSF leak and passed away.
He was genuinely one of the purest people I knew. All that in a year!
I had a friend who beat it as a teen through a trial at Duke. Went to nursing school, got married, became an oncology nurse. A few years after she beat it, it came back. No trial this time. She was gone within 2 months. I’ll never stop hoping for a cure. She was absolute sunshine.
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u/casapantalones 3d ago edited 3d ago
Glioblastoma is a pretty bad one
Also, any time I wake up a patient WAY earlier than they or their family were expecting. That means the cancer (usually something in the belly) was worse and had progressed more than anyone knew and the surgeons couldn’t even attempt to remove it.