Let People Help You

I hope everybody had a tasty Thanksgiving. I definitely did, though I had to absent myself at one point when my circuits got overloaded. I’ve just returned from a surprisingly illuminating Black Friday shopping venture, and I’m excited to pass along that experience in an upcoming post, but first I want to present this topic, which relates to the idea of Thanksgiving or gratitude in general. This was actually one of the earlier blog entries I wrote, but I waited to post it, as it seemed there was other, more timely information that needed to get out first.

I would also like to make an addition to my Thanksgiving gratitude list: I am thankful for the other people who have blogged about their craniotomy experiences. My family had many questions for me yesterday about my recovery, and one person asked whether I was worried about any of the ongoing cognitive issues. I am not worried because I know that eventually these things will improve, though it does take time. How do I know that? Not because my surgeon told me, not because some medical website about craniotomies listed these side effects, but because bloggers and contributors to chat-sites about craniotomies shared their experiences. Our experiences differ widely, but knowing that some people experienced trouble following recipes or the plotlines of all but the most basic TV shows in the first few weeks after surgery helped me understand what was/is happening to my own brain. In particular, I’d like to make a shout out to the bloggers behind Me, Myself & Meningioma and The Everywhereist (she had a different type of benign brain tumor but wrote in detail about the craniotomy experience). Without their documentation of their experiences, I might have been a much more worried craniotomate than I am. Thank you, sisters; you inspired me to create this blog.

And now to a most important topic:

After a craniotomy, you will need help. You may feel better than you thought you would (I do), but you will still need help. If you are married or coupled, your significant other will also need help. People will want to help you, so let them. As uncomfortable as it may be at first to ask or accept, let them help.

If you have staples in your head, you will probably need help washing your hair because you can’t get the staples wet. You might even need help showering. Find someone you trust and keep your cleansing regime simple.

Page 1 of my med schedule

Depending on your medication protocol, you may have a dizzying array of meds with different tapering schedules like mine. I could barely follow the instructions for the Decadron taper. Fortunately, my husband is tech-savvy, so he immediately created a medicine spreadsheet when we got home to make sure I was taking the right meds in the right amounts at the right times. Ask someone to help set this up for you.

You will need help preparing or cooking food. I cannot stress this enough. Simple recipes may overwhelm you initially and your main caregiver will also be tired from all the other caregiving he or she’s doing, so having friends or relatives organize a meal train can be a great relief. The women in my book group started delivering meals on the night I got home, and about every two or three days after that, extending more than two weeks from the date of my surgery. Initially, it felt like they were doing way too much for us. It soon became a most welcomed balm for our healing bodies and minds. We are so grateful to them. Both my husband and I love to cook, but we have been so worn out. The meal train from friends has nearly brought tears to our eyes.

If you are the main companion of the surgical patient, try to have someone stay with you at least during the surgery. My surgery was supposed to be 2-3 hours but ended up taking 4.5 hours. [The first part, including most of the tumor removal, went very quickly, but a piece of my pet head-rock was entangled in some blood vessels, so the surgeon had to pull out a sonic screwdriver to work them free.] That’s a long, nervous time. My husband brought his laptop with him to pass the time, but how annoying it would have been to have to pack it up every time he got up to stretch his legs, go to the bathroom, or get some coffee. My older sister arrived about two hours into the surgery, someone not only to share the nerves and pass the time but also to keep other family members updated, so he didn’t have to call ten people with every update.

Things like light housecleaning and doing laundry may be something you can handle, but it will also exhaust you in the early days. If someone offers, let them help. Your top priority is resting. The same goes with outside tasks, such as mowing, watering, raking, or shoveling. Enlist a neighbor if you can. Modern life is often very isolated, but I’ve found that people often appreciate their neighbors’ reaching out, even if it’s to ask for a bit of help. People like to be helpful.

You won’t be able to drive anywhere for two to six weeks after surgery. If someone offers to take you to the store or pick something up for you, let them. You may go stir-crazy being stuck at home. Ask for a coffee date or stroll around the neighborhood.

I am blessed by having a very caring husband and a great group of friends. Not all people are so fortunate, so here are some options if you have a more solitary lifestyle:

1.     There are brain tumor support groups. One was advertised in my hospital. Contact the groups in your area to see what resources are available to you.

2.     About ten days after my surgery, I received a call from my insurance through United Health Group. This was not a care-team call; the caller knew I had been in the hospital but didn’t know what I’d had done. She wanted to know how I was doing: Did I have a caretaker? How was my pain? Were my finances okay considering that I had to take time off of work? Did I need a driving service or in-home assistance? Yes, my insurance company was offering me resources to ease my recovery. Look into whether your insurance offers something similar.

3.     You probably have coworkers or neighbors. Now’s your chance to get to know them better. I firmly believe that people truly want to be helpful. Asking for help allows other people the opportunity to let their good sides shine, and they’ll remember that. They may even be touched that you reached out to them. Your request can be simple – I recommend getting help with food – but any little bit helps. Your colleagues may think about pooling cash to buy you flowers, but you may forestall that by saying, “Thanks, everyone. That’s very kind, but as much as I appreciate flowers, I really just need help getting to my doctor’s appointments/getting groceries/watering the garden.” You may have more support than you realize.

Let people help you; it will heal you more than you know. And someday you will have the chance to return the favor.