I had the best doctors, and I adore them all, but when I asked what I should do to prepare for my craniotomy, with my pen and paper in hand ready to take notes, they said, and I quote, "ehh, nothing really."
NOTHING? Yeah, that’s not happening.. This is BRAIN SURGERY... I need something to do to prepare for this.
Turns out my surgeon really is a master at what he does, and he is so laser focused on the surgery itself, that I might have been just fine doing nothing. But if you know me, you know I’m a planner and I could never be satisfied with "ehh, nothing really." I needed some control over the situation. I didn’t know if I’d come out of surgery and even know who I was, so I needed to control the few things I still could. Many of these things I thought to do before surgery, some of them I didn’t think of, and I’m blessed to have people who picked up the slack and got. it. done. My hope is that if you’re preparing for some type of cancer surgery, especially a craniotomy, this list of 14 things you should do before brain surgery will help you regain some control and feel as prepared as possible.
1). Get extra bedding ready. Start with pillows. You will need lots and lots of them. Have pillows, pillow protectors, and at least 2 sets of sheets ready to go. The pillows are necessary because you will have to sleep almost completely in a sitting position for a while, so you'll need to be propped up. I spent hundreds of dollars on fancy pillow wedges, and nothing worked as well as good old fashioned pillows piled behind me. Chances are you probably already have plenty of them at home, so that is an easy one. Also, make sure you have a pillow protector to protect your pillows from any incision leaks or blood - gross, but it will most likely happen. You'll need to change the sheets often so make sure you have lots, and I mean, lots of clean sheets and towels ready to go.
2) Organize your room and the area where you will be recovering. You will spend a lot of time there in the weeks following recovery and you will appreciate having a clean organized space. Add something interesting or pretty to your nightstand. My sister-in-law got me a pink marble tray for all my medications, some pretty healing crystals, hand cream, lavender hand sanitizer spray, prayer books and even this wonderful rose quartz facial roller. Mine is a little on the pricier side so I linked a budget friendly option here. These things might not sound very important but they lifted my spirits every day, and I looked forward to using the items.
3) Put a small trash can next to your bed. I don't think this one needs an explanation.
4) Prepare your medications. This is an obvious one. But don’t forget your supplements! If you are on steroids you will have trouble sleeping and going to the bathroom.
5) Get a large thermos and drink tons of water. I love this one here and I kept 2 next to my bed at all times.
6) If your room is upstairs, set up a chair and small side table to eat. I couldn’t make it down the stairs without a lot of help, so it was nice to have another place to sit and have tea or a small meal. I used this one here with a small chair in my bedroom.
7) Make sure you have some comfy clothes, a nice robe and slippers. The comfy pjs are a must because you won't wear much else while recovering, and I would get some slippers that have a back so you don’t fall (like these here). I also bought a nice long robe, which was handy for when visitors stopped by. These pjs are my favorite because they were cute enough for when visitors showed up unannounced, and they are beyond comfortable.
8) Pay as many bills and finish as many pending items as you can. Your head won’t be in a place to think straight after a craniotomy, and everything might seem really overwhelming. I felt like the smallest things sent me into a complete panic attack, and I would have never been able to make adult decisions or complete adult tasks immediately after surgery. And by adult tasks, I mean something as simple as paying the FPL bill.
9) Get a stool for the shower and baby shampoo. I had this pretty teak stool which worked great, but if you want a more temporary, budget friendly option, I linked one here. You will also need this baby shampoo. The doctors will insist that you use only baby shampoo on your hair, which is awful!!!! I had thick, long hair and it was impossible to comb through it without conditioner, but about a month after my stitches healed, I was allowed to switch to regular products. Also, if you’re like me, you won’t be able to shower yourself right away and you will need to make sure you have someone to help you.
10) Stock the fridge or make plans for healthy food delivery. Oh, and hide the junk food. You might be prescribed god awful steroids like dexamethasone and you will eat anything not glued down.
11) Make plans to send the kids to sleep out for the first couple nights and figure out who will drive them everywhere for awhile. I couldn’t drive for about 3 months because my vision didn’t fully return until then.
12) Prepare your cell phone. My phone was the only thing I was allowed to bring into pre-op and it was the first thing the nurses gave back to me after surgery. So have your phone set up to be “anesthesia friendly.” First, disable the password function – nothing worse than trying 100 different passwords and getting locked out because you can’t remember the damn code.
Also, tape a note to the back of your phone with immediate family members’ phone numbers. My husband used a label maker and stuck his and my dad’s number to the back of my phone:
I was so worried I wouldn’t be able to think or I wouldn't know who I was (maybe I was being a little dramatic on that one), and I wanted to hold up my phone and tell the nurse to call the number. I must have had some death grip on my phone as they knocked me out, because when I awoke in the Neuro-ICU, the first thing I saw was the label of my dad's phone number stuck to my fingers! I remember crying because I felt like he had been with me the whole time, protecting me. ❤
13) Designate a person who will send updates to family and friends.
14) Try to do something fun. Maybe take a mini staycation or something. COVID made this impossible for me, but I would have loved to stay at a beautiful hotel on the beach, sit on a rocking chair in front of the ocean, put my feet in the hot sand, and get a little Vitamin D.
I know this list seems overwhelming – especially if you are reading this before surgery. My advice is to tackle one thing at a time. Even if you only get a few of the things done, you will make it so much easier on yourself during recovery. If you have any specific questions please send me a message. I'm here to support you in any way I can.