Perhaps one of the most difficult aspects of leukemia treatment is the long hospitalizations most patients must endure. This is because the chemotherapy given to most people with leukemia is very strong and wipes out much of their bone marrow, leaving just the stem cells behind. It takes several weeks for the stem cells to regenerate the bone marrow. During this time, patients are susceptible to infections due to very low white blood cell counts. Other things, like red blood cells, clotting factors and other blood components, are also very low during this time and many leukemia patients require blood transfusions.
In my own experience over the course of four chemotherapy treatments, I spent anywhere from three weeks to six weeks at a time in the hospital in 1988.
So how did I cope? I relied on my wonderful dad to move me in to my hospital room each time and bring my survival kit of things along with me. Towards the end of my treatment, my survival kit expanded to fill several boxes.
Decorating Your Room
Spending so much time in the hospital, I came to see my hospital room much like the dorm room I lived in during my first two years in college. Since I was going to be spending so much time in that one little room I wanted to make it feel more like my own. So I started decorating with things like:
- stuffed animals
- collages and drawings I made during visits from art therapist
- “get well” and “thinking of you” cards from family and friends
- photographs in desktop frames
- artificial flower arrangements or colorful balloons, since live flowers and plants will not be allowed in your room when you are under isolation precautions
Making It Feel Like Home
The hospital can be a boring place especially when you’re feeling better and looking for things to do. This is where bringing along a selection of diversions can make a real difference. For example:
- books and magazines, especially convenient if they’re loaded on an e-reader like a Kindle
- a deck of card and some word search, Sudoku and crossword puzzle books
- hobby projects, like knitting, crocheting or scrap booking
- a handheld video gaming device, like a Nintendo DS or a PSP
- if it’s not already provided in the room, you may want to consider bringing along a DVD player to connect to the hospital-provided TV or an all-in-one portable DVD viewer
Safety note: It might a good idea to store all your electronic items in a foot locker that you bring with you from home so you can lock them up when you’re not using them or when you have to leave the room for tests. You don’t want to tempt potential thieves from taking your things when you are asleep or not in your room. Also, check with the staff to make sure any elctronic devices you do bring with you do not interfere with any medical equipment in use in your room or on your hospital floor.
While the hospital will provide you with gowns and pajama pants, it is much more comfortable to bring some of your own clothes along with you. Look for tops that button up the front so you can slip in and out of them easily without disturbing any IV lines you might be connected to. Bring pants that are stretchy and that you can easily slip in and out of, like ones made out of knit fabrics. Try to avoid bringing clothes that have metal zippers, snaps or grommets which will have to be removed for radiology tests.
You might also consider bringing your own pillow and blankets to use on your hospital bed. Just make sure to launder them before you bring them to the hospital and place your pillow in a zippered pillow protector.
During times when you experience fevers or other symptoms that may necessitate bed linen changes, you might want to set aside your personal items so they don’t wind up being sent to the hospital laundry room.
If you do bring some of your own clothes from home, you’ll need to set up a system with one of your friends or family members to take the items that need laundering back home with them and bring the clean the items back to you in your hospital room.
You will have two types of visitors coming to see you in your hospital room: your health care team and your family and friends.
I suggest bringing along a big tub of candy (like the kind you can get at Costco), setting it out and inviting members of your health care team to help themselves whenever they come into your room. Not only is this a nice way to say “thank you” on a regular basis, it also creates a kind of reward when ever a nurse or doctor comes to see you. They will get a good feeling when they enjoy a piece of candy from you, a feeling you’ll want them to remember whenever they interact with you.
As for your family and friends, they may feel uncomfortable or intimidated visiting you in a hospital setting. So bringing along a few boardgames, a card game like Uno or even a Nerf ball to toss back and forth to help them feel more comfortable and give you an opportunity to interact with them like you would at home. Don’t hesitate to ask them to bring you things from home or from your favorite store or restaurant, as long as any food items fit with the dietary plan your health care team has prescribed for you. It will help them feel useful in a situation where they may not know how they can help.
Use these suggestions as a starting point to get you thinking about what you would like to take with you the next time you head to the hospital.
Feel free to leave a comment if you think there is something I have overlooked or forgotten so we can add it to this list. As always, I welcome your comments, suggestions and questions and encourage you to contact me if there is a topic you’d like me to talk about as your Leukemia Power Writer. Until next time, take care.