I was really disappointed by the lack of information out there about what it was like to recover from brain surgery, specifically a craniotomy. I really had no idea what to expect, and maybe if I was better prepared, I wouldn't have been so hard on myself during my recovery. If you were about to have brain surgery, and you called me for advice (which I’m completely cool with by the way), I would want you to know these things:
1. It hurts but not as bad as you might expect. They say the brain has no pain receptors, but your scalp does, and your skull does, and anything else they might move around during brain surgery probably does. I wasn't prepared at all for the jaw pain, cheek bone pain, eye pain, or inner ear pain. Luckily, the pain doesn't last long and you can get by with over the counter stuff. The nerves sometimes hurt and you can almost feel them trying to reconnect - SUPER weird but sorta cool part of the recovery.
2. Your scar, and your whole face for that matter, will look like something out of a horror movie. Mirrors will not be your friend. The incision will be red, large, and puffy. Your hair will be full of dried blood and all the sticky glop the surgeons use, and your face will be lopsided from the swelling. It’s frightening, but it will heal. It has been 10 months since my surgery and I am finally at the point where, unless I’m looking right at it, I don’t even see my scar when I look in the mirror.
3. If the tumor is in the front of your head you might end up with boxer's eye. When I first woke up, I could open both eyes and I looked pretty normal. Within hours my eye was swollen shut. It stayed that way for a few days.
4. Your hair might start acting crazy! Mine turned bright orange and then loads of it started falling out. The falling out part is apparently normal and it’s called shock loss. Don't worry, it usually starts growing back when the trauma of the surgery has passed (mine took about 3 months to start growing). I still can’t find anyone who can explain why my hair turned orange and then turned back to its normal color. My hair dresser calls it my golden halo and, 10 months later, it’s still growing out.
5. You will feel like your brain doesn’t work. Everything will be a struggle – putting the cap back on the toothpaste, closing a Tupperware, putting food on a plate, getting dressed, even just following a simple conversation. Some people go to rehab after a craniotomy. I didn’t, and I don’t know if it’s because of COVID or because the doctors didn’t think I needed to, but I might have done better with a little rehab.
6. The steroids and anti-seizure meds will make you a raging nutcase. God help the one who put avocado on a PLAIN bagel instead of Pumpernickel. I mean honestly… I flipped out more than I am comfortable admitting.
7. Recovery is hard and it takes a long time. This is not a fast process. This surgery is like nothing you’ve ever done. A craniotomy is a tough surgery and the recovery is equally as tough - give your body time to fully heal. I still don't feel fully recovered and my surgery was 10 months ago. It’s a long, tedious process and I’ve had to actively work at gaining back my fine and gross motor skills, as well as my flexibility, strength, energy, and mental focus. I originally hoped that by the one-year anniversary of my surgery I would be fully recovered. That’s 2 months away and an unlikely goal. Stay tuned for my one-year post surgery update.
8. You might not be able to move as well. I don’t know if it’s the surgery itself or the medications, but your whole body might ache, your muscles won’t work, you won’t have any strength. Remember the stairs you used to climb all day? Yeah, forget those for a bit - just getting up from your chair will feel impossible. Get some light weights (and by light I mean like 1 lb.) and make them your new best friend. Every day I did 15 minutes of arms and legs using 1-pound Bala band bangle weights (you can find them here on my exercise page). I also did squats and planks. As someone who used to be able to hold a plank for minutes at a time, it was so frustrating to have to start at 10 seconds and build my strength back up, but I increased it by 5-10 seconds every single day until I got back to normal. Little steps people, little steps.
9. You might notice a change in your senses. I never had a great sense of smell and now its superhuman. Maybe the tumor was pressing on an area that affected my sense of smell or maybe it’s just a consequence of the surgery itself. Whatever it is, I can smell you coming from a mile away.
10. You might have sensitivity to light and vision problems. I couldn’t see well for months, I had double vision, everything I saw out of my right eye was distorted and I had terrible sensitivity to light. My sister-in-law, the smart doctor I’ve mentioned in previous posts, told me it would probably improve a tiny bit every day, and the improvement would be so minor that I wouldn’t even notice it happening, until one day I would just open my eyes and my vision would be back to normal. And of course, she was right! So just be patient – more patient than I was – because it could take weeks or months.
11. You will be emotional. A brain tumor is a scary thing, and having it removed doesn’t just magically take away everything you have been feeling. There’s still the fear of the pathology report coming back malignant, the fear of the tumor coming back, and the fear that you will never feel normal again. If you don’t have a therapist, now would be a good time
to find one.
12. People might not know what to say to you. Chances are they are in shock just like you are, and they will either say nothing or say something so wrong that you will wonder how they have made it this far in life. There will be a small handful of people who will always know the right thing to say, usually because your diagnosis hits so close to home for them and they have a personal experience with something similar. Then there are the people who will just sit in silence waiting for you to take the lead, or worse, say the wrong thing and make you want to scream. I’ll probably follow this up with a blog post on what NOT to say to someone just diagnosed with cancer (ex. What’s the prognosis??? Is never a good idea. Google it yourself. Don’t make someone tell you that they have a 5-year life expectancy, ass****).
13. People will surprise you. Some people will come out of the woodworks and totally shock you with so much more love and support than you know what to do with. Appreciate them. Others will seem to fall off the planet. Try not to take it personally. Everyone deals with grief differently and they might come around later once they’ve processed the whole thing. If you’re like me, the silver lining to this nightmare is that you will find your people. For me, some of them have been my people all along and it didn’t surprise me that they showed up to support me. Others did surprise me. Either way, you can bet I’ll be there for them any chance I get.
14. People won’t understand what you’re going through, especially once the visible scars have healed. They will think you are back to “normal.” They won’t see all the other healing you’re struggling with, like the emotional, psychological, and mental part of the recovery process that can take much longer to heal. When I feel like someone doesn’t understand that I’m still recovering, and wants me to do something I’m not ready for, I try to be honest about it. This seems to work, feel free to use it:
Despite my brave face and seemingly normal exterior, I still struggle with a lot of things and I don’t really feel comfortable doing that.
It’s hard because you’ll want to put on a strong front, but you have to be honest since people can’t see what’s going on inside, or what it is like to recover from what you went through, and there really is nothing to be ashamed of.
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