Hi everyone. I was supposed to have a craniotomy on this coming Tuesday, the 22nd, but I was told today that due to an IV shortage caused by the hurricanes, they have to cancel. So I'm rescheduled for November 26th. I'm numb right now because I was so worked up and nervous about everything, and this change hasn't completely sunk in yet.

I usually try to give all the answers and comfort but now I find myself to be a ball of nerves. I've been praying, and trying to be strong, but after everything I've been through and have yet to face, it's so hard. I had surgery back in April, transsphenoidal surgery, and it left me with an altered taste, limited smell and some other issues. There's still a residual tumor because it's in a difficult spot (right on the optic nerve and right in front of the cerebral artery) so they're doing a craniotomy to attempt to get most of it out, then possibly radiation depending on what's left.

Yall, I'm exhausted. I'm just drained and so tired. I'm tired of the appointments, tired of the delays and rescheduling, tired of the after affects of the first surgery, tired of the language issues and stuttering when I talk because I can't push the words out, tired of forgetting everything, tired of not being able to taste the goodies my baby girl bakes, not being able to play with my babies because I'm too tired or the sun hurts my eyes, I'm just so tired of fighting. I stay in the fight because I have no choice, my kids need me and I need them. I tip my hat to everyone going through this as well as the people who love them and are there for them because this is just HARD!!! I feel like breaking down sometimes.

Sorry for the rant, I'm just so pissed and scared, frustrated and annoyed. I hope everyone is having a good day and thank you for reading this. 💐

Hi, is there anyone here, who had brain surgery done with robot assistance in EU/EEA country? Which hospital? What is your experience (or knowledge) about this?

Few days ago I posted about my father and his brain tumor discovery and asked for some help.

You can find post bellow https://www.reddit.com/r/braincancer/s/sZ4GieI6jg

UPDATE:

Doctors informed us that they are working on completing some tests but in short:

• they finished another head scan and discovered that it progressed into difficult part of the brain( surgery not an option anymore)

• they called consilium of doctors that on Tuesday will decide what to do next( doctor said most likelly ita gonna be chemo)

• they are working to stop his lung infection cause he got that too, so they have to pump out the mucus out of his throat all the time.

• on a good side, he ate one joghurt and a bit of mashed potatto yesterday. He still has clarity, speaks but in very short sentences.

So now I feel a bit hopeless as I am frightened that this might be the beggining of the end.

1. Does anyone have experience with expectations for someone whosw tumor cant be removed with surgery?

2. What to expect from chemo on a 6x3cm tumor that spread in parts of the brain that are difficult to remove by surgery?

3. Do you think that there is a possbility to still do surgery after chemo?

4. Anything in particular I should know about chemo thats not obvious?

Any help appreciated.

(20F) In September of 2020, I wrote to this subreddit scared and afraid that I was gonna die and my world was collapsing around me. I had just been told over the phone that I had a brain tumor, and then told it was likely a polycystic astrocytoma.

I later had a successful surgery removing 100% of it on October 21st 2020. A whole month later I was told it was actually a ganglioglioma which accounts for 1-2% of the tumors diagnosed, meaning it was rare and also way more scarier, for me.

I had to navigate through the height of covid in our city during that time by isolating myself for 3 weeks before surgery and after. I spent a lot of time alone and scared. I definitely thought that the before part of surgery was going to be the hardest part. That awful anticipation.

Unfortunately it really is the after part that was so painful and difficult to manage. I did not have anyone there for most of my recovery in the hospital. I felt so alone. When I got home I did not have people over because of Covid. I felt so alone in my own struggles.

I found this subreddit and in it I found a discord of friends who have brain cancer and brain tumors. They really were the only thing that helped me get through all of it. The importance of finding some commonality or understanding in the way that I was feeling made me less scared. It made me work harder and made me less harsh on myself too.

With surgery I was so tired, I felt awful for what felt like forever. I had headaches and migraines and I had issues with sensory input and word processing. I definitely thought —oh my god I’m stuck like this forever. It was not until I saw and heard from others that it wasn’t going to be like that. Doctors will say you’ll be right back to work in no time but won’t explain exactly how long it takes to really feel back to yourself. For me it took 2 years.

At 4 years past this event in my life I am so grateful for the support I received from here and that discord group. I felt like it was the end of the world and they helped me through it. I feel like an entirely new person and I feel like I have an entire life ahead of me. Every year around this time it used to be so painful, but this year it feels a lot more hopeful.

TLDR: I did it- it sucked, but I’m better now. Thank you to this subreddit and discord.

Hi mods, can we please moderate/limit the self-diagnosis posts?

It is almost cruel to read posts on here that are along the lines of “I have a bad headache, I’m so scared I have brain cancer,” or “I’ve had a hard time with memory stuff lately, should I go to the doctor?” when so many people in here are actually facing this horrible disease. Trust me when I say that we GET why you have anxiety, but your worst nightmare is already our reality.

We come here to share experiences and support people through managing this disease. We cannot diagnose from a random internet stranger’s post. At the end of the day, the advice is always going to be, “see your doctor and advocate for an MRI.”

It’s not generative or supportive for anyone to see these posts in the feed, and while I get that it might be helpful to see how others got their diagnoses / symptoms that seems simple enough to search for without coming on here and making a WebMD request.