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Glioblastoma is so aggressive i lost my healthy dad from one month of diagnosis..

I just came across your video, I am so glad I did, see my husband had Glioblastoma, and took his life in 2016. I've never really would have known what he would've gone through if he stayed, even though this story of your fathers passing seems so peaceful in a sense. I commend you for the care you gave your father. It's hard, and I wanted to say thank you for sharing your story, your point of view, and for allowing me to kind of understand my husbands passing. Thank you, thank you so much for this. I believe this has really helped me understand so much I never knew, and I feel almost a sense of closure, peace if you will. I hope you see this because I want you to know finding my husband has left me with serious trauma and PTSD Ive struggled with the why, how come, why would he, and tonight I got the answers I needed. You've just genuinely helped me heal more than anyone in years!!! I'll never forget you, and I will always support you from this point on!! Thank you really doesnt even show how appreciative I am. May god bless you and your family!🙏🫶

My grandmother who was 74 years old died of this hideous scum that lurks in our loved ones..4 months ago she was completely fine, the next thing you know, she struggles in her bed helplessly, but we avoided any therapy or surgery for quality of life. It’s a disgusting thought that you will never see a loved one again in your life..but we make the most out of it!

Hi AJ/Alex/Alexander, Thank you for your videos on your father’s glioblastoma. I am 72 years old and have glioblastoma (GBM). I am an outlier in that I was diagnosed with cerebellar GBM in May, 2021, went through the surgery, TMZ and radiation therapy and have been doing relatively well, other than some balance issues,, double vision, fatigue and a smidge of depression. And I just want to say thank you for the videos. So, having some idea how it will eventually, and likely inevitably , progress, I am waiting for the next shoe to drop. Sure, the videos are a bit frightening and I worry about the impact my illness may have on my wife, son and daughter. Like, YIKES. But honestly, I needed to know more about the impact, emotional & otherwise, my GBM will eventually have on those I love. I have my own ideas about how to do some planning to, I hope, decrease that impact. If you ever get the chance, please comment about what you would have liked your father to have done ahead of his deterioration that may have helped you? What letter or recording/ video from him would have helped assuage the suffering, guilt, & emotional fallout you experienced as his son and caretaker and you may continue to experience? I know these questions are a big ask so if you can’t respond, I certainly understand and I will still very much appreciated the videos you have already done. So, in the meantime, I have a basement to clean, files to organize and a living will to update. Thanks again.

I agree we need death and hospice education. We just go “oh they’re in your heart forever” “oh they’re in a better place” and move on avoiding it. But it’s important to be prepared for the process of what death looks like and the different ways it can look. It’ll be a horrible process no matter what but being prepared helps. Normalizing death as a natural process and occurrence so you aren’t shocked helps. And knowing hospice is an okay option is so vital, a lot of people are on hospice too late. They could’ve been more comfortable if they’d been on it earlier instead of having this mindset that you HAVE to “fight” and that accepting death is giving up on someone. It isn’t. I’m not saying people shouldn’t fight for more time if that’s what they want and with advancements in medicine, most cancer is fightable - glioblastoma is the worst possible diagnosis but in the case of other cancers there’s usually some options. But hospice is one of those options and it’s okay to choose .

These laptops have doubled in price. You can resell them for 3000+

Thanks for sharing...sad story but well put in the context. Now, enjoy the life your dad gave you man.

THANK YOU SO MUCH FOR THR DETAILED CLARITY OF YOUR EXPLANATION;I AM ON THIS JOURNEY AFTER SURGERY AND INTO CHEMO/RADIOTHERAPY AND NEEDING TO UNDERSTAND THE POTENTIAL PROGNOSIS.SINCERE BEST WISHES

Is there anybody who used to feel a lot of pain even before surgery? Is this postoperational pain similar to that one, just worse?

Came across your video when looking up Lenovo keyboards...how's that working for TH-cam's algorithm😆 Anyway, I'm not a writer but I do journal on my laptop. I have been using a Lenovo Yoga 7 but found the keyboard not that great for touch typing. I mainly use the Yoga 7 for work as I extensively use the touchscreen and tablet functionality. Anyway, just want to mention, my go to 'writing' (journaling) gadget now has been a refurbished THINKPAD X270. I bought it as it's a 12.5" business laptop, much smaller than my 14" thin and slim Yoga 7. The X270 I bought has 4G LTE which means I can connect to the internet with a data/internet SIM. It was something I needed when out and about as I can sync with my Google Drive and OneDrive accounts (so I can access my journal files on any internet connected device). Love the Thinkpad's X270's keyboard as well! Great key travel and tactility and because it's small I can just shove it in my backpack and write anywhere. I bought a privacy screen/shield and an extended (larger capacity) battery just like you showed on this video and to me, the Thinkpad X270 laptop turned out to be my 'ideal' journaling laptop 👍

This sounds like exactly like what is happening to my Dad. He has only just found out he has this tumour whilst undergoing 2 completely independent neurosurgeries for hydroencephalitis so he has a shunt. These surgerys hid the fact that this glioma was growing in the other side. Thank you for this video. It must have been difficult. I am also a writer doing my doctorate.

Ice packs helped me

Great video. Thanks for sharing

Sir, I have the exact same dramatic experience, but with my mother. The disgusting treatment of her in the hospital still makes me sick. And after endless procrastination and ultimately a complete useless brain surgery, she died, 1 day after she got her diagnosis; glioblastoma, version “terminator.”

I got my hemorrhoids initially because I had a severe constipation for two weeks during freezing mid winter exams. The stars aligned against having an easy bm, or any at all. I looked pregnant and felt pregnant although I am a dude. Tried everything and took everything to give birth, even went to the dorm clinic and they gave me fibers instead of softeners or whatever. Anyway, not sure at what day of those two weeks, I went in our near absolute zero toilets and tried to go but instead I ended up just tearing myself and bleeding a lot. WORST PAIN EVER IN MY LIFE. The only thought on my head at the moment was *"I want all my enemies to have this and feel it even worse"* Couldn't push anything out and went to pass out in suffering on my bed. I couldn't handle it anymore and drove two hours to go back to our warm home with hot water to get that demon out. It worked and got that huge monster out painlessly somehow, but the damage was already done and the hemorrhoids have taken roots and left hideous skin tags giving me nightmarish weeks, and flareups over the years. That's why I say *the surgery isn't bad because it didn't hurt as much* almost not at all, but the discharge is worse so far but I hope it will be gone soon enough.

Dnt eat red meat

Watching this video six months ago, just a month after my dad's glioblastoma diagnosis, gave me a lot of insight and helped me prepare in ways I didn’t think possible. Even though you can never truly be ready, I’m deeply grateful to you for creating this.

P.S. Thank you for sharing though.It's very helpful

you're brave to talk about this so openly and honestly. this is very helpful to a lot of people including me. thank you

You're putting limits on what God can do.Respectfully Elise Gunn from Mo

I'm trying to avoid subscription based things after my Microsoft office was hacked. But hearing that if I want to toggle from my Mac to my PC, I'd have to use Dropbox, is a bummer. I just got rid of that service and have no desire to resubscribe.

One of my friends living in Ontario, Canada was diagnosed GBM in 2017. She went through all the surgeries and chemos but her health ony got deteriorated. Unfortunately, I've lost the contact of her and need to know her condition right now. Would anyone please help me?

Had a Lenovo laptop for over a year, & had to get rid of it because it went bad.

Tumour there to prevent cancer cells spreading...RESEARCH N STOP BEING SPOON FED LIKE U WERE WITH THE SMURFASEEN.....

Probably great for plotters and non-fiction types of books. I can see how these features would be useful in that case. Terrible layout for a pantser, though. I only want to see the printed page on my screen.

I can understand the change from going to the toilet to just pooping in his diapers. My father didn't have cancer, but it was very old age where that fine line between walking to the bathroom and just doing it in bed hit us.

An offline Chromebook with focus mode on and grayscale mode works absolutely perfect for me, for a fraction of the price....

Imagine having 9-12 employees, but only one developer. For three platforms. At this point, there haven't been updates in 18 months and it doesn't help that the UI for SCrivner looks l ike it was created in 1998.

Pablo Isaiah Kelly followed the Dr Seyfried Metabolic Cancer Therapy using keto. Although he was IDH1 he survived 10 years. Did anyone suggest Keto Press Pulse

I love Scrivener and I love Vellum.

You did a great job giving your dad your everything and you will always feel guilty that you didn't do some things right. Forgive yourself just like you would want him to do if the tables were turned All of you have gone through a tough and sad time dealing with cancer. It's horrible & we are hearing about it more than ever. How many on here with cancer or a loved one previously healthy that got cancer suddenly after a covid 19 shot? Thank you!

Anyone tried laser ?

My grandma diagnose with brain tumor and I don't know what to do I am very sad.

I’m not a digital artist, I’d use it for Scrivener and other writing and text editing/commenting work tasks. Considering my old iPad is broken, I do need a new one to write/work on the go, and I would buy 11” again. The Pro would be overkill for me, wouldn’t it? But the Air isn’t that much less expensive, so I’m very uncertain.

My heart goes out to all GBM patients & fam! My husband passed away 3 mons ago being diagnosed 5 mons ago. Other than a slight personality change which chalked up to him getting old he was working nights & driving ! Being he had prostate issues for yrs taking Tamsulin Hydrochloride 2 pills a day doubled by his family Dr. for 2 yrs I suspected still do his enlarged prostate metastasized in cancer Upon emergency CT scan found 2 legions in his brain frontal lobe and left side which was later confirmed by a biopsy 11 days later. I didn’t bring my husband home to die he had a seizure leaving his left side unable to move He was a solidly built man who hiked biked swam walked daily. Lost ability to talk then:( We had many stairs in our 4 story split home For a brief period after he was given steroids he improved for five days where wth help he learned to walk aided.Thought if he improved I could bring him home! He suffered another seizure after which never walked nor could communicate other than the right hand he couid squeeze yes or not for no. He insisted he had no pain but was administered anti-seizure meds and statin drug for thrash he developed on his tongue couldn’t eat well:( After reading comments wish he could’ve died at home spread fast no treatment bcs of how fast the Glioblastoma Multiforme moved The Neurosurgeon said this stage 4 brain cancer wouid’ve had same outcome if he was seen mons before and prob years in the making unbeknownst to both of us. Tried to get my husband help to get prostate gland removed yrs before he wouldn’t listen. Some of his family saw changes more obvious if only they would have gotten him to listen the time he went overseas to visit family! Also at work mons before noticed mistakes he was making not telling me. We all could have told him and if a male friend insisted to get 2nd opinion yrs ago believe could have saved him Hope this wakes men to their pride and go get prostate surgery or if noticing changes in their behaviour even slightly get brain looked at to see if dementia or cancer forming! Thx Note to Drs should be part of physical a CT of the brain to prevent later developed cancer

They removed a chunk of my brain too I'm recovering much better it sounds in maybe 3-5 weeks after surgery now... Oligodendroglioma. I am only 29 years old. Kinda dick when you called him dumb.

March 21,1982 - I was 16. The oldest of three siblings with a functionally insane mother and a hard-working blue collar dad, tolerating his wife. On March 22, 1982, I was at my dad's bedside, at 5:30 a.m., watching him writhe in his bed, having a grand mail seizure. He was healthy yesterday. 10 months and five days from today, he would be dead. The parentification I was forced into at 16 stole my adolescence and now, at 59, I am still trying to recover it. My day was 42 when diagnosed with GBM 4 on Easter Sunday, 1982. He was three days shy of his 43rd birthday when he passed on January 27,1983. At 17, I had made the decision to "pull the plug". It's something no one should have to do, let alone 17 year old kid. I am now working on a book about the soaring highs and horrific lows me and my dad and family experienced in those 10 months. My heart is broken and it breaks a little more when I see the stories of people dealing with this motherfucker of a disease. And, like many others, I have suffered from PTSD and severe depression since the age of 17.

Celeron tends to clock around 2.4, does a lot better then it looks on paper.

I'm currently at 14:50 in this video , everything that you explained has already happened but within a span of 3 months and the rest is busy playing out like a horror movie . Now deciding if home nursing or Hospice is the best option .The conclusion of this video hits hard , my moms suffering weights so heavily on my heart that I feel emotionally drained and anxious , knowing that a loved one is in distress and there's nothing I can do about it. I think about it every hour of every day ....

I just did my surgery 6 days ago for hemorrhoid and fissure which is why im here watching different videos.the fìst night after the surgery was hell💥💥💥 a night i will always remember but today I feel much better no pain BM ok so im praying for anyone with the same conditions keep strong drink alot and eat a lot of fiber. You're not alone ❤

I lost my seven year old in September from a glioma. He only had symptoms for five weeks and then was gone. It has been terrible and I feel for all the people going through this.

Dude really thanks for the 😮😢😢 now I want to chance my surgery should have stopped watching your video.

Thank you AJ. I bought an iPad Pro 2 months ago and a Procreate app, and I'm loving it for writing and comic making. I was using Scrivener on my older MacAir for my novel writing but now have have no idea how to transfer my projects to my iPad. Have you had this problem? Thank you

My dad just found out he had a brain tumor on the left side and its so big they are not able to operate. Dont know the results yet about it being cancerous but they are thinking it is.

Your detailed and forthright discussion is so helpful to me. I learned on Tuesday, 11/5/2024, at the age of 70, I have a large GBM tumor on the right side of my brain that explains why over a period of just four weeks I have lost the ability to easily ride 40+ miles a day on my bicycle to struggling to walk without falling from extreme muscle weakness in my left arm and leg. I was told I have 12 to 18 months to live with quality of life not yet determined. A brain biopsy next week will determine a radiation/chemo program that might get me to 18 months. It doesn’t seem worth it and I am researching assisted death options that can’t be taken until a doctor says I have less than six months to live. Quality of life is much more important to me than quantity. Thank you for sharing your experience with this.

My brother (42) was diagnosed with glioblastoma multi-forme, wild type, nonmethylating and inoperable tumors (4) 19 months ago. His body cannot endure more treatment. He wants me to help him by writing down his final words for his children, but he cant think of the words. He thinks anything he says could leave ambiguity for the kids (young teens). He is afraid of interacting with his kids now since he knows he doesnt always make sense and he doesn't want them to remember him saying something strange or disconcerting to them. What words did you need or want to hear from your dad?

My mom had GBM, and avastin caused a hole in her stomach. At this point she didn’t recognize anyone. Friends calmed her down, so we were watching it, and I made her breakfast, and helped her go to the bathroom. I didn’t know yet, but what she said would determine the rest of my life. She turned to me and said “you’re really nice, can I live with you?”I was 26, and am now I’m 40. I’ve watched my mom die, my brother who was 33, and my dad from colon cancer. 8/26. I’m trying to get out of this hole I’ve dug myself. But I’m 40 now, and i don’t see myself having a happy life.

Do not feel any guilt although is normal to feel it, with time you realize you did your best and in such cases that’s all we can do, in medical terms we can have diagnosis and option to treatment but our bodies specially the brain are sometimes unpredictable, be proud of giving the care your father needed, be proud of this video because I’m sure few ppl will learn from it ! May you have a wonderful life ahead of you and may your memories of your dad be the ones of joy and the good times you shared with him 🙏🙏

Thank you for being so direct with your experience… my mom passed at age 71 due to brain cancer, metastasized from lungs. I truly appreciate you posting these videos…. It doesn’t feel as lonely. ❤ Hugs to you, and your family.

Have you tested any mechanical keyboard that comes close to the typing experience on a ThinkPad? I currently resorted to the external thinkpad keyboard. Just curious if you've found something similar ?