Packing for TIL Therapy (or any longer-term hospital stay)

I saved my packing list from my hospital stay for TIL therapy in 2020, and recently was able to share it with two friends starting TIL. I dedicate this post to Lindsay, Chrissy, and Monique’s partner. You can read about my experience with TIL therapy here.

Set Your Routine

I got some great advice from a friend who had a long hospital stay for a bone marrow transplant. She told me the most important thing was to have a routine each day. This was mine:

• Open the blinds
• Eat Breakfast, Drink Coffee
• Shower
• Get dressed and put on sneakers
• Set a goal of walking a certain number of steps in the halls each day (this varied depending on where I was in treatment) and try to stand once an hour
• Do an activity (I brought a travel yoga mat and would stretch, I wrote letters, I knit, colored, listened to music, read, and, of course, watched some shows)
• After dinner, back into PJs/slippers & close the blinds
• Movie or read
• Lights out at a decent hour because those nurses will be coming for your vitals and weight soon 😊

What to Bring:

Pillow & Blanket: Hospital bedding is not cozy. I bought a plush Ugg Blanket and brought my king-size down pillow. 100% worth the space in the suitcase.

Wraps (3 qty): someone gave me the wise advice to avoid zippers because they will catch on your nipple tassel (what I called my tri-fusion port). I bought a Nordic Beach wrap (this thing is heaven) and also brought a couple of long wrap sweaters that are open (for port access) without a zipper.

T-shirts (6 qty): I brought a combo of short sleeve and long sleeve—all v- or scoop neck (again, port access). Some were designated as PJs/night time.

Scarf: Because I run cold and my shirts were scoop necks, I brought a scarf and wore it frequently. It was a lightweight infinity scarf and came in quite handy to hold an ice pack around my neck when I developed a rash.

Fingerless Gloves: Again, always freezing.

Spaghetti-strap Tank (2 qty): Wasn’t really in the mood to wear a bra, so I brought one for travel there and wore spaghetti-strap tanks with built in bras for my hospital stay.

Pants (5 qty): 2 PJ (lighter weight and heavier weight) and 3 regular (all leggings, nothing fancy).

Laundry Bag (1 qty): Once or twice I sent clothes home with Nick to wash.

Socks (4-5 qty): Including a couple that are no-slip.

Shoes: Slippers (1 pair) and sneakers (1 pair).

Headwear: A knit beanie and a bamboo beanie (for when my hair fell out).

Underwear: Enough for your time there or less if you’ll have laundry access.

Shorts (1 qty): I brought a pair of running shorts just in case I was roasting at any point (I don’t think I wore them).

Eye Mask and Earplugs: This is essential especially for daytime naps and to drown out the beeping of machines and noisy neighbors.

Things to do: Yoga mat and resistance bands, knitting, books, etc.

Snacks: I’m gluten free, so I brought gluten free crackers, power bars, tea, and lemon heads (good for nausea).

Sign: I had way too much fun with this Felt Letter Board.

Electronics: I brought my SurfacePro to watch Netflix, obvi my phone, headphones, chargers (I got a 7-foot phone cord), AN EXTENSION CORD!, and if your phone does not have a kickstand, bring some sort of tripod or way to hold it up.

Décor: Diffuser, essential oils, and crystals. I loved my little zen corner. I also brought my Fuck Cancer cross stitch and put it on my wall along with a huge gallery of photos of people I love and me doing adventurous things to remind myself I’d be #OutLivingIt again soon. I packed sticky tacky stuff to adhere pics to the wall.

Other: Dry erase marker and ruler (I drew a calendar on my window of the schedule of events. My doctors loved it.) Canvas zipper bags to store electronics, crafts, etc. I like to feel organized and sitting in a bed with a pretty small tray felt crowded and chaotic at times (especially when they brough my food!) It was helpful to have the canvas bags to keep things in their place.

Toiletries: They gave me things like toothpaste, body wash, and lotion. If you’re on your period, you won’t be allowed to wear tampons so don’t bother bringing those and be prepared for the whole world to know about “aunt flo” as my husband called her in his Caringbridge updates.

Hair Stuff: I needed headbands and hair ties until I didn’t. Nick and I brought a barber kit, and he shaved my head when it was coming out (and his). Some hospitals might supply this.

How to Get Support

We found using Caringbridge as a way to keep friends and families informed super helpful (vs. individually texting everyone you know). Other people I know set up private Facebook groups.

Throughout the years and big events, I’ve had a few ways of getting my supporters involved:

1. Eye-patches: For eye surgeries or works for TIL (for uveal melanoma), too, ask your supporters to wear an eye-patch in your honor and share a pic to social media as a way to raise awareness and show their support (this could be done on the day you receive the TIL infusion).
2. Superman Ts: My husband and I wear our Superman T-shirts every scan day. My family does the same on big days (including TIL day) – any super hero shirt works!
3. Playlists: When I had Gamma Knife, I asked my friends and family to send me their favorite fight songs. I made a playlist that I still listen to (and listened to when I walked the halls during my TIL stay).
4. Gallery Wall: I printed pictures of friends and family and made a gallery wall in my hospital room. You could ask people to snail mail you pictures ahead of time.
   
5. Fan Mail: As soon as you get settled into your hospital room, share your address on Caringbridge or Facebook. Set expectations though! Discourage people from sending you anything because you’ll need to get it (and your slow self) through the airport. And suggest any mail arrive before a set date.
6. Provide GoFundMe or Venmo: People just want to help! This is particularly helpful for the caregiver. We gave Nick’s Venmo and people sent him money to buy him a beer or dinner while he took care of me. SOOOOOO many people sent us DoorDash and Grubhub gift cards which was incredibly helpful when we returned home.
7. Mealtrain: If someone offers to set one up for when you arrive home, SAY YES.
8. Hair Loss: My brothers, brothers-in-law, fathers-in-law, nephew, and father all shaved their heads with me.

I hope this is helpful! Be sure to check out my other blog on What to Expect with TIL Treatment.