My red Goodlife bag tilted on the mountain made from my unkempt bed. Without folding them, I placed a plaid pair of pajama shorts inside the bag to accompany the four pairs of loose-fitting tops and two thin pajama bottoms already inside. A small white pouch containing toiletries peaked out of the bag’s side pocket.
Ten minutes earlier, I answered my phone to learn that a bed was available and within an hour, I had to check into the chemo ward at Victoria Hospital: 7thfloor, room 5A. This would be my hotel suite for a week.
It would be the first of four in-patient chemo sessions and the week ahead was a foreign language to me. I didn’t know how to speak chemo, and my light bag was symbolic of my ignorance. Had I gotten my hands on some sort of “what to expect” guide, I likely would have lugged along a suitcase.
I wanted to write this post to provide advice to youth and young adults who will endure an overnight stay in the hospital as part of their cancer treatment, but also as guidance for their supporters. I hope this advice could similarly be helpful for anyone who will spend a few days in an uncomfortable hospital bed tied up to an IV pole receiving any sort of treatment. I won’t claim that this “guide” will be universal for all situations because the lists and advice are cultivated from my own experiences. When I reminisce on the months I spent in the hospital between chemo and surgery, I remember the time being less horrible than my expectations. I learnt to make my stays bearable and I wanted to share how.
Chemo Care Package:
- The amount of pajamas or comfortable clothes as nights you will stay (unless you have someone who can wash your clothes and return them to you). You sleep on cotton sheets and will be receiving a cocktail of alien medications, a combination that may make you sweat relentlessly. You might puke, or generally just feel gross. Having multiple clean pairs of clothes to change into feels refreshing after wearing a pair of salty puke stained pajamas.
- A few sweaters or a housecoat and slippers. It is nice to leave the bed and walk or wheel around the hospital if you’re able to. Having slippers and something to cover up will insulate you after leaving the boundaries of your warm blankets.
- Your own Pillow. With your plastic-wrapped hospital bed you receive two pillows that have been sucked of any plumpness after dozens of heads have rocked around on them. Packing your own pillow is useful for supporting your lower back and to replace the uncomfortable complementary ones.
- A light blanket. I bugged my nurses for warm blankets more than medication. Having my own blanket reduced this nuisance and can be helpful for your visitors if the hospital’s air is frigid as well as stale.
- Toiletries. If you find item #1 useful, or if personal hygiene is a value you uphold, this package item will be a non-negotiable. It feels lovely to have a hot shower or to swipe away your sour smell with deodorant after hours of being pumped with poison; even if you just receive an awkward sponge bath from your nurse.
- A literal or figurative visitation schedule. The small curtained-off area where you will dwell is large enough to contain your narrow hospital bed, a typically uncomfortable visitation chair, and the required hospital equipment for your treatment. I was fortunate enough to have multiple family members and friends who took the time to visit me and we learnt after a few days that having a visitation schedule is helpful. My visitors were more comfortable and stayed longer when they didn’t have to circle around me like I was in a coffin rather than a bed. By having a schedule, we all could understand which time slots worked for everyone, and they could easily fill my day with more personal visits. The time certainly moves quicker when you have people to spend it with.
- Know your daily schedule. During my experience at the hospital, I would have social workers, physiotherapists, and teams of doctors periodically visit my room. I would also have an hour each day without medication and could choose to be detached from my IV pole. It was extremely helpful to know the scheduling of those elements so I could properly plan visits with my family members and my dog.
- Items to distract you. Item #7 depends on your personality and I can only suggest the items that kept me sane:
- Reading material. Whether you like magazines, novels, or Instagram feeds, this item will keep you company when you have no visitors.
- iPad or computer (and headphones). In addition to this item, it is helpful to have a platform to stream movies or TV shows from. This can serve to distract you and your visitors, and it passes multiple hours quickly. If you’re someone who likes to fall asleep to the sound of TV, this item may be a non-negotiable.
- Attempt to learn something new. Try knitting, writing, or studying a health plan you’d like to adopt. I learnt to expertly paint my nails with both hands, and brushed up on my poco español.
- Bring coloring books or mini crafting material. My sisters and I painted rocks for the Memory Garden at the hospital, and spent time adding color to outlined images in elaborate coloring books. My poor attempts at art were enjoyable, and it seemed to make the clock tick faster.
- Snacks and food. I am not a “foodie” but apparently I drew my line at hospital food. It was great to have a granola bar, applesauce, or Mentos available in the tiny drawer beside the bed. I would leave my tray of mass manufactured food untouched and gorge on a bowl of soup or a half sandwich brought by a visitor. I felt better and ate more when I had my choice of food especially after feeling unwell most of the day.
- A list of nearby restaurants and items you enjoy from them. This is extremely relatable for long stays in the hospital especially if you’d prefer outside food. Your visitors begin to learn your favorites as your taste buds change from chemo.
- Earplugs or noise cancellation headphones. You cannot control who your roommate will be unless you choose to pay for a private room. I have an extremely hard time falling asleep to someone snoring and having a device to mitigate the unwanted noise was useful.
- Your knowledge of your cancer. I regret not asking enough questions, and not understanding the cocktail of chemo pumping through my veins. I wish that I had researched what the medication would do to my body, or sought out advice from someone who could understand what I was about to experience. Your knowledge will be a very useful tool to pack in your bag. You will not be able to anticipate how your hospital stay will be, but your knowledge of your disease and medication will always be a powerful device.
Additional Tips and Advice:
- You can ask for sleeping pills if you have trouble sleeping. Ask earlier in your stay if you think you will require sleep-aids because your nurse has to approve this with your doctor.
- Some hospitals provide warm blankets and big socks. If you cannot bring slippers or a blanket, just ask your nurse for these items.
- If you’re receiving anti-nausea medication but your stomach isn’t settling and neither is the water you’ve been drinking, you can ask your nurse to try a new type of medication. If you’re used to taking Gravol, try that variation.
- You can ask if there is a private room available after you have been checked in. During my second round of in-patient chemo, I hit the lottery and received a private room at no extra cost. After that happened, I began to make it a habit to check if any were available. You will get moved out if there is a priority case, like a quarantine situation, but I did luck out again for a few days after asking the question.
- Being in a hospital can be uncomfortable and cause anxiety. If your medical team has not already prescribed something to ease your stress, ask your nurse if they can provide something to help. There are one-time medications that can reduce your symptoms and that simply dissolve under your tongue.
- Puking continuously can cause dehydration. Your medical team will likely catch this and provide fluids through an IV, but sucking on ice chunks helps trick your brain into thinking you’re eating and will quench any immediate thirst.
- Some hospitals have popsicles. Ask for them.
- If you have a small dog, question if your pet can visit your room. I was able to bring my puppy into the hospital as long as we were discreet, and that my roommate approved. If this is not possible in your hospital, try to have someone bring your pet for an outdoor visit. I used to count down to the millisecond until I could be detached from my IV pole and wait outside for my stepfather who had Jax in the car with him.
- Steal chairs. Although the space is tight, we often found spare chairs around that we could shove into the room as long as your visitors don’t mind touching knees. You will likely have a roommate during your stay, but if there is some time where your neighboring bed is free, open up your curtain barrier and let your visitors spread out in the room.
- Get up if you can. Do your exercises, get to know the wards of the hospital, people watch in the cafeteria; do not stay confined in your bed. It helps to pass the time and it keeps your wits intact. Although I was exhausted and often needed a pair of wheels to get me around, it always felt nice to move my joints into different positions, and take in new scenery.
My family members added many of these items to my bag, but lifted the weight just the same. My sisters would bring their computers with Netflix poised to open, or had bags of games and books to share. My parents knew to bring me food, always carrying coolers over their shoulders full of snacks they thought I might like. My husband would coordinate the visits with my dog, and remember to grab all my comforts from home. The most important thing your family, friends or partners can pack is their time.
If I had correctly imagined how my visits at the hospital would unfold, I would have packed heavier. The items on the list, and the anecdotes described made my weeks at the hospital bearable, and I hope my care package is helpful for someone about to check in.
Chemo Care Package: