Things To Get

I think the most important thing is your family. The first instinct is to isolate but please do not. You may want to be left completely alone but don’t do this. Your family just want to support you, especially if you need physical support later. Nobody will care for your wants and needs like family can. Even if you have the best care at Mayo, there is Nothing like having an advocate to make sure everything coordinates, that you want for any not a thing. Pajamas, a cold drink, favorite chips or music, a bamboo chemo cap, btw bamboo is the only naturally antibacterial fiber out there. It is soft as silk, completely breathable and helps regulate the temperature of your skin. Little things are a great comfort- a family member can take the sting out of doing things you cannot.
It will also help your family to be proactive for you- to be needed. I was able and honored to be there for our mom in her last years. The most wonderful moments ever were to just be there, to make new memories of sharing simple things. Laughing over travel photos, thinking of family in heaven, talking about our hearts desires and fears. To love and be loved right back.

I spent nearly five years with our mom from taking over driving to her last days on this earth while I worked two jobs. It took all I had to do it but the moments with her made it the best time of my life. I would do it again in a heart beat. This is what you can do for yourself and your loved ones. Don’t shy away and p,ease give yourself this gift.

Before surgery as far as trying to cope with the pain before I even realized I had a tumor- pillows. Sleeping on the wrong pillow or even just napping in a bad position would make my headaches 1000x worse.

If you’re looking for things to get to prepare for surgery if that is the plan these are the things I did that I found helpful. I’m sure a lot depends on where your tumor is. Mine was cerebellar. Lots of neck and head pain afterward and I am a back sleeper so sleeping was impossible for me after surgery but I remember asking my husband for my pillow first thing. Also, button up tops/pajamas so you don’t have to pull them over your head, slip on shoes (but closed back so they don’t slide off) since you can’t bend over, hair stuff to manage after surgery hair once you can wash your hair- I was told Baby Shampoo. With the matted blood my hair lived up in a clip on top of my head before I could wash and then again after until staples were out and I healed enough that I could put my hair down. Before I could actually wash the blood out of my hair I had my mom and husband by baby wipes and they tried to rub some of the blood out of my hair. Surgery is hard enough so anything you can do to feel a little more clean/organized and comfortable helps a lot mentally. I also bought extra sheets for our bed and a lot of extra pillowcases so that I could change my pillowcase as frequently as needed and we changed our bedsheets daily for the first couple of weeks. Also not something that I bought but I felt like it was a good idea before my surgery: I tried to do as much planning ahead as I could in terms of bills or any house chores to allow myself time to heal and not have to worry about anything else. I wrote down all of our bill payment information and went through it with my husband so he would know in case I had any memory issues, and we made sure all the laundry was done, some freezer meals were prepped, etc., things like that.