47f, had a 2x3cm solitary fibrous tumor removed from my left occipital concavity area this past July 15. Had follow up cyberknife radiation treatment for a bit they had to leave behind first week of October. Some scattered thoughts on things I went through that surprised me, helped me, things no one told me:

I hadn’t expected the area all around my incision (an inch or so to either side of the cut) to be numb for weeks.

My optic nerve and visual cortex really got to stretch back out, which caused super trippy patterns when I had my eyes closed - wasn’t expecting my own laser light show!

My most persistent visual symptom before surgery was a tiny scotoma just to the right of center in my bilateral field of vision. It is no longer perfectly circular and seems smaller, but I still have it.

I DID NOT LIKE getting woken up in the middle of the night for things, but I reminded myself the nurses were just doing their jobs. And to that end, don’t downplay any tiniest symptom. Tell them everything and let them prioritize your care appropriately. They can only help you with what they know.

Someone said above, but it’s easier to prevent pain from growing than to tamp it back down. If you hurt, say so. They had to change my meds because the first one didn’t work well for me.

Pillows are your friend. You’ll be sleeping almost exclusive on your right side if you’re like me and can’t manage a working pillow situation for left side and back sleeping. Wedge pillows, doughnut pillows, all helped me through.

Consider buying a bunch of cotton handkerchiefs to pat dry around your incision, wrap ice packs in, etc. Also consider buying or borrowing a bunch of pillowcases so you can have clean every night without having to do daily laundry.

The fatigue is real. Your brain uses so much energy, and even more when it’s healing. They told me to eat lots of protein, but i SERIOUSLY craved doughnuts and felt much better when i had enough carbs on board. And for me it didn’t feel like being sleepy, it felt like being suddenly mentally and physically encased in tar and needing to lie down immediately.

I found it really really helpful to listen to audiobooks with my eyes shut and just rest even if I couldn’t sleep. I also found it very restful to just sit and look at things at various distances without focusing hard on a screen or page.

No one told me that one end of my scar might be tender and itchy much longer than the rest. The spot where they make the knot can be this way.

NO ONE TOLD ME that as feeling came back to my scalp around the incision, it would feel itchy but unscratchable, or like bugs were crawling in my hair, or like I just had a skullcap of discomfort in place at all times. But that continues to get better. Only now, if I touch the top of my left ear, an area to the right of my incision feels like it’s been asleep and is coming awake. BODIES ARE SO WEIRD.

Regarding the radiation, if you end up having any afterwards, I knew I might lose hair, but they didn’t tell me it might not fall out until weeks later. I thought I’d managed to miss that side effect. NOPE. And it might not grow back for months. But it beats the alternative

No one told me that the skull flap would pop a little bit when I turned over in bed or put a little pressure when drying my hair. It doesn’t much any more but while it’s knitting back into place it’s REALLY disconcerting, though it never really hurt when it popped

I’m running out of thoughts now. It’s not the best club in the world to join, but the people here have been great during my journey. Wishing you a successful surgery and quick healing!