My name is Megan Wing and I live in Brandon, Florida, with my husband Jeremy. Two months before my 32nd birthday, I had the great displeasure of being diagnosed with Ewings Sarcoma. Luckily, I had the best team of doctors and nurses that prepared me to the best of their abilities. I knew what medication would be given and when, what the side effects could be, which pills were "as needed", and when to go to the ER. The plan was 14 cycles to include an outpatient treatment of VAC and an inpatient treatment of IE. What I was not prepared for was what it would feel like to be in a hospital room for six days and five nights for that inpatient treatment. I knew it wasn't going to be a vacation but I didn't think it would be so boring!
After the first two cycles, I came up with a plan to make the best out of a crappy situation. Here are my tips to make your stay more enjoyable:
1. Designate a travel bag. If you really want to have fun with it, then go shopping for a new one. Pick out something that makes you happy. Maybe your favorite color or covered in cute animals or flowers. Have this bag ready to go with the essentials at all times. You never know when that thermometer is going to read a fever and you're off to the ER again.
2. Bring your own pillow and blanket. When people hear you have been diagnosed, blankets come out of the woodworks. I have one that I am particularly fond of given to me by a friend. I still use it today. It is light and super soft and purple (my favorite color). As for your pillow, it knows your head and will be your best shot at a comfortable sleep (when you can get it). I've heard silk is nice once you lose your hair. I preferred my cotton pillowcase covered in cat silhouettes.
3. Bring some fun pajamas but also regular clothes too. If you plan on leaving your room, get cleaned up and change. You will need shirts that you can pull up over your butt or button-ups. Find cheap tank tops with a wide neck hole that you can shimmy into (while not snagging your port) and then just throw a fleece zip-up hoodie over it. Yoga pants or any comfortable pants as long as they are different than the ones you slept in. Shoes and socks or flip flops. You don't have to wear the ugly, uncomfortable gown or socks (unless they share important details like fall risk yellow). It’s not a fashion show but putting a little effort into "going out" helps time pass and makes you feel good.
3. Decorate your room and your IV pole. Give that pole a name...mine was Mr. Bing. Every time I left the room for any length of time, he would start binging at me to plug him back in (so annoying.) He was usually decorated with an origami crane from the art studio and a blue Moffitt bag attached by big pink flamingo clips that you would use at the beach. Just make sure the weight is evenly distributed so he doesn't fall over.
4. Set an easy goal or task to complete. Nothing hospital related. For example, I liked scrapbooking at the time so I brought a bunch of stuff to put together a few pages. I think I landed on completing 10 pages before my discharge date. I like to do stuff with my hands. Maybe for you it's finishing a good book. I tend to fall asleep after a few pages so that did not work for me. Having a goal got me out of bed each day.
5. When you get out of bed, make it. Make your bed! Yes, the cleaning crew will come in and remake it but making your own bed is a way for you to tell the day that it belongs to you and you are ready to have a good one! Once you're out of bed, try to stay out of it for a while. Go for a walk if you can or sit by a window.
6. Take your visitors on a walk outside or down to the AYA Lounge. Get out of the room as much as you can. Communicate with your nurses, don't just disappear. They know when your IV's need changing or when a doctor is coming by. They can maximize your time away. Also, you will learn your room has a revolving door. People constantly coming in to do this or that at all hours. If you are not there, that happens a lot less.
7. Take advantage of what Moffitt has to offer, even if it isn't your thing. Arts In Medicine has a studio you can go to with volunteers to help you get started making whatever you feel like. I made so much string art paintings that by the end I was asking them to put me to work. On Tuesdays, people bring in their dogs for you to visit. There is music, yoga, meet-ups. Post a schedule on your board and stick to it.
8. Keep a journal and/or a blog. My journal, because I am not a touchy-feely person, was filled with what I ate, what medication was given when, what symptoms I felt, when I urinated/defecated and how much, water intake, etc. Science and facts. My blog was for my family and closest friends so they could keep up with me without a phone call required. That is where I shared how I was feeling and what I was doing. I am a private person and Facebook is definitely not private (even though my account is set to private).
My point and hope is that you acknowledge the negatives of this experience and be open, ready and create your own positive experiences.