alycee99

[alycee99]

I spent 11 days in California with my family. We called it tumour trip 2017. It was amazing and exhausting and heart warming and everything I needed. I am now just waiting. Waiting for the call about surgery. Waiting for someone to tell me that it’s time to get rid of this thing.

People keep telling me I am strong, and I am! Don’t get me wrong. I know I am. But I am also weak. A couple weeks ago I spent 14 hours at the clinic and the ER investigating a weird headache. When you have a brain tumour a weird headache could mean a brain bleed or an brain infection; both of which are bad news. Thankfully I have neither.

I have been sick the last few days and every weird pain, every twinge in my head; it makes me worry about the tumour.

I’m scared of surgery; I’d be silly not to be. But. I am also strong and I will beat this. I need it done so I can start healing for real. All the healing from my spinal surgery feels futile right now because I have one more huge hurdle to jump before I can actually relax and heal.

I don’t know what I’m hoping to achieve with this. Maybe some sort of catharsis. Maybe I’m just reaching out to maybe find people who are dealing with the same thing. Maybe I just want people to know where I am. I’ll try to collect my thoughts and post something more eloquent next time.

[alycee99]

I have a brain tumour. (It's not cancerous!) It's taken a while to be able to say that and really accept it. In January of 2017 (while trying to figure out my back issues - which have since been fixed with surgery) my neurologist discovered a brain tumour on an MRI of my head. We had been investigating whether I have MS or not (turns out I don't! Yay for some good news!) and we accidentally found a 2cm by 2cm Meningioma.

At first I didn't even know what it was. My mom was the first to use the word tumour. My neurologist had just said Meningioma over and over. I didn't know how to respond to any of it. They say it's not cancer, so that's amazing. They say we found it early, so that's really awesome. But. I still have a brain tumour.

My neurologist sent me to the best neurosurgeon in Western Canada and he proceeded to tell me all kinds of things I don't remember. I remember being sad and scared and asking my husband to get my dad to come in the room because I needed both of them there.

The neurosurgeon gave me my prognosis (really good, early diagnosis etc) and my options (radiation or surgery). I asked some questions and finally asked him what he would tell me to do if I was his daughter. He smiled and said he wouldn't be allowed to operate on his own daughter, but that if he knew someone as good as he was, he'd say surgery for sure. Lots of side effects of radiation and the possibility of radiation induced tumours later in life helped me to decide he was right.

So now I am waiting. Six months after spinal surgery I am waiting for my neurosurgeon's office to call and give me a date for my brain surgery. After surgery I'll spend a week in hospital recovering and then a longer time at home recovering.

I am thankful we found it early. I am thankful for the referral to the best Neurosurgeon around. I am thankful for a system that allows me access to medical care without worrying about money. I am also scared. My Neurologist told me a few days ago that it's not a big deal and in the world of brain surgery mine is the best one to have. My tumour is easily accessible, right on the surface and very small. It should be a straightforward thing. But. I don't like the idea of someone cutting into my head. I've had a lot of time to deal with this and I am working on laughing about this (people are extra nice when you tell them you have a brain tumour! Haha. Even my siblings!), so I'm mentally preparing and figured telling everyone was one way to start.

So there you have it. My latest story. I think I may keep a diary of this stuff. Maybe post it online. I followed another person through her blog and it really helped reading everything she was going through. It would be nice to know I'm helping others while dealing with this or to find others who have dealt with it.

To anyone I didn't tell in person who feels I should I have, I am sorry. It's exhausting dealing with chronic pain, illness, surgery, recovery and now waiting for a new surgery and recovery. I am exhausted. I am tired of telling people so this is what I chose to do. I don't think I need anything right now, other than for people to know. When the time comes I promise to try to ask for help. I'm typically pretty bad at that so I can't promise I'll do it. Luckily I have people in my life who will do that for me.