Recently, a few people have asked me what to bring/expect when going to the hospital since their loved one was diagnosed with cancer and will be undergoing surgery and/or chemo and radiation. Having spent over 2 of the last 5 months in the hospital, I’ve become quite the expert in being a ‘professional patient’. The hospital is never any fun unless you are there to deliver a child and even then I’m not sure ‘fun’ would really be the choice word. Whether you are the patient or a loved one, there are many things you can do to make the experience a little more tolerable. In preparation for my next round of chemo, which is a 5-day inpatient stay, I will be using these tips myself! Tip# 6 is my list of hospital essentials so skip down to the end for that!
Tip #1: Be Your Own Patient Advocate
This is arguably the most important thing to remember when you are in the hospital. Ask questions about anything/everything. Ask what medications you are taking and why. If something doesn’t seem right, do not be afraid to say something! One time the radiologist came to my room to do a chest x-ray, which was strange since I hadn’t been complaining of chest pain or anything, so I said I wanted to talk to my nurse and sure enough he had the wrong patient. Not like that was a big deal but they are human and make mistakes sometimes.
If you’re a family member or friend, this applies to you too! I always forget to ask at least one question everytime I see the doctor, in the office or hospital. Luckily I usually have someone with me to remind me of what I intended to ask. I blame it on the ‘chemo brain’ so I’ve learned to write a list.
Tip #2: Say Yes* to Visitors (*and no when you need rest)
When someone offers to come see you or bring lunch, just say yes. It is easy to feel needy and like a burden to your loved ones but if they offer, you need to accept! There could be days of no visitors since people get busy with their own lives so take advantge of the offer. It’s very easy to get down and become reclusive but that’s a slippery slope so allow someone to come make you laugh or hear you cry. It’s crucial to maintain a positive attitude because if you don’t, your stay will be miserable.
On the flip side if you need rest or alone time, it is perfectly okay to say no. When I was admitted for my first hospital stay, I had visitors 24-7. It took me about a week to realize I could, and needed, to allow myself a few hours a day to journal, nap or just watch TV. I started getting to a point of cutting visits short if I needed to nap. You need to listen to your body! Especially since you don’t get any sleep in the hospital… Nurses and staff are in and out all night long. For me sometimes my chemo or antibiotic would go up at midnight then 3 am, the nurse would draw blood at 5am and CNA would come take vitals at 6am. Craziness!
Tip #3: Don’t have any expectations
This tip I had to learn through experience. Timelines and expectations need to be thrown out the window. Things do not always go as planned in the hospital… now that is an understatement. Part of the miscommunication in a hospital is because of the amount of people handling one task. When I am discharged from the hospital, it requires 3 different doctors to sign off. They all round (come see me) at different times and sometimes the orders aren’t put in right away or they could have different opinions. One doctor gives the okay and another thinks I should stay an extra day. Talk about anxiety!! If you spend anytime in the hospital, whether it’s 2 days or 20, when you hear you can leave… you want to boot, scoot and boogie right out of there! This brings be back to being your own patient advocate: if a doctor tells you something and the nurses never get the order, make sure they follow up or you’ll be waiting a while! Discharge typically happens in the afternoon so try to be patient.
Also, when I say don’t have expectations, I don’t mean you shouldn’t have standards. If your room hasn’t been cleaned in days, say something. If your meals do not come on time or as you wanted, say something. When I’m neutropenic, I cannot have any raw fruit but every single day at every meal I had a fresh fruit garnish on the plate even though the meal slip said no raw. Not only is it frustrating but it could get me really sick. Not cool, bro! If your in pain or in discomfort, say something! I have trouble with this because while I don’t want to bother anyone, I need to remember I am a paying customer and this is their job. (But do remember nurses have 5 or 6 other patients so don’t be a diva because no one likes that!)
Tip #4: Have ‘Nurse Bait’
Coworkers actually gave me this idea and it worked like a charm! Have a jar or basket of candy and offer it to all the nurses and CNAs that take care of you and I promise they’ll come to your room quicker. Nurses love sweets!
Tip #5: Do your research… But don’t over do it
*This doesn’t really apply to being in a hospital but I think it’s important to share!
This applies to both patients and loved ones. When I was first diagnosed, I went on research overload; looking at various cancer websites, blogs, scholarly journals, etc. and it was too much. When first diagnosed, they probably haven’t determined what mutation or cytogenetics you have if its leukemia, or what stage it is if the cancer is a tumor. It usually takes some time to get that information and it is imperative to have when researching. Each individual person is just that, individual. There are so many different factors that come into play and when researching you find general statistics. These statistics are usually pretty alarming and can really make a person feel defeated so it is important to remember there’s always an exception to the rule. Cancer blogs were also pretty depressing and it was part of the motivation for me to start my own blog… Hopefully if someone gets diagnosed they can find my blog and have something that’s honest but encouraging to give them hope that it’s going to be okay. I’ve had many cancer survivors and fighters reach out to me and while we relate on having cancer, each and every experience is so incredibly different. Research the need-to-know facts of the disease but stay away from statistics and all of the ‘possible outcomes.’ I believe it’s beneficial to be naive to an extent… There’s no need to go into an already difficult situation with more fear. Any questions you have regarding possible outcomes and your treatments, ask your doctor directly as they know the specifics of your case.
Tip #6: Bring comfort items!
The final thing you can do is bring what I like to call a ‘Kickin Cancer Kit’ but can be used for any hospital stay. Before you go shopping, check to see if there are restrictions. When I was in the hospital for a month for my induction chemo, I wasn’t allowed to have flowers in the room and I had to turn down probably 5 or so bouquets! I just had the nurses give it to another patient on the floor, but food for thought. I was diagnosed on a Wednesday and admitted to the hospital the next day so I didn’t have any time to plan. Luckily, I received so many awesome gifts from my friends and family that they essentially gave me all of the goodies that make up my kit! Here are my favorite items and products. Spoiler: I don’t pack light but in my defense this is my list for extended stays.
- Eye mask – Body Benefits luxury padded sleep mask
- Lip balm – Aquaphor, Burts Bees Nourishing
- Slippers/Bath robe to walk around floor – getting out of the room is important!
- Really soft blankets – I loved having my own and its good to have a few so you can wash often
- Soft socks – you can never have too many!
- Neck Pillow
- Teddy Bear or something similar.. When I got my port, my chest was really sore for a couple of weeks so having something like a teddy bear elevate my arm when sleeping made it more comfortable Edit
- Good toiletries – I would go to Sephora and get some of the sample or travel size products or consider getting a Birchbox. It’s nice to have high quality shampoo, lotions, etc. This is not exclusive to women!
- Beanies, hair wraps, etc. – Not everyone loses their hair but if you do it’s cold when you first shave it! I lived in beanies.
- Lavender Essential Oils – A little dab behind the ears at nighttime is soothing
- Snacks – I would get individual portions or have ziplock bags to share… If the immune system is compromised you need to be super careful which leads me to the next product..
- Hand sanitizer – meet your new best friend
- Jolly ranchers/life savers/etc.
- Cooler for drinks – I am neutropenic for a couple weeks and cannot have ice and no drinks in the hospital are chilled so I had my own mini cooler.
- IPad, Kindle or the like.. Also consider gift cards to Amazon for the books or Amazon Instant Video and iTunes gift cards.
- Crossword/Sudoku puzzles
- Journal – so important!
- Cards or letters – you can never get too many! I saved ALL of mine and can reread them on days when I’m down
- Pictures or decorations for the hospital room – this depends on how long you have to stay. We really only decorated when I was there for 26 days.
Tip# 7: Take a lot of selfies
Why not? It’s a fun way to pass the time.
I hope these tips are helpful should you ever need them.. Although I hope you don’t! I’m always a resource if anyone has specific questions so feel free to reach out.
Until next time,