Chemo Tips

Going into my first chemotherapy treatment was very frightening. I did AIM chemo in 2022, which is Ifosfamide and Doxirubincin. There was a lot that my parents and I didn’t know and so we have compiled some information from our experience to help others with theirs. I am now being treated with monthly high dose Ifosfamide chemo beginning June 2024. Please let me know if there are suggestions you would add to this list.

Getting started:

• You should track what you do and when you do it during your chemo. Write down what medications you take and when you take them. Write down what you felt after taking them. Write down what you ate and how you felt. If you write down this information you will be able to go back and review what worked well and what didn’t during chemo. This will make your next rounds better. Do this immediately because no one will remember later. We discovered that one of the anti-nausea meds was making me more sick than the chemo and we were able to change this medication to one that actually made me feel better.

• You can put lidocaine cream on your port an hour before they access it and it doesn’t sting nearly as much. This may mean that you put it on in the car on the way to the hospital depending on where you live. You ask for lidocaine from the hospital or you can get a prescription from your doctor (it only takes a small amount).

• Ask what the spectrum of side effects are for all the meds you’re taking! Sometimes it’s not the chemotherapy that is making you sick.  An example is Compazine. It is commonly given as an “in between” anti-nausea medication, but it can make you very sick and weak. Other side effects are blurry vision and restlessness. Ask for Reglan instead if you have these problems. 

• Let nurses and doctors know ALL of the discomfort you are having so they can make sure you aren’t having a reaction to something that is supposed to be helping when it isn’t.

• Nausea: You have “as needed” anti-nausea meds that you can take in between the doses of  Zofran. Take them if you’re feeling at all queasy in between. It is much harder to chase away nausea and pain than it is to prevent it.  Tell someone as soon as you are feeling sick or, better yet,  have meds started before you even begin to feel sick - you are allowed to do this. You should stay on top of this timing yourself to ensure that there are no gaps in meds which may make you nauseous. Anticipate your needs!

• Emend, anti-nausea medication, is not compatible with the AIM chemo drugs so you have to schedule them around each other. Scheduling them the right way can get you home earlier, but you must sort it out with your nurses as scheduling wrong can mean unnecessary time in the hospital. 

• Initially nurses will wake you up all night to take your vitals and administer medications.  Lack of sleep will exhaust you and make you feel sick. Once you have shown you can manage your healthcare, you can get longer periods of time during the night without interruption. This means they will skip vitals and medication during the night to give you uninterrupted sleep if you are healthy enough. Now my nurses let me sleep from 10pm - 5am. Just ask!

• You don't absolutely have to use the urinal in the bathroom. You can record how many times you pee and/or the volume by writing on the mirror with a marker. Some people may still have to use it, especially if you are retaining a lot of water weight, but this is something the nurses will let you take control of if you show that you are responsible with taking the measurements.

• You can take a shower when your port is unhooked before they start a new batch of chemo.  You will only be off the chemo for half an hour so it won’t delay your departure from the hospital much and you will feel so much better.  The body wipes can leave your body feeling sticky, but they are fine if you are not well enough to shower. You will need to have the nurse cover your port with a showerguard and tape if you shower.

  Eating:

• Keeping something in your stomach at all times will help combat nausea. Keep an applesauce, crackers or Orgain shakes by your bedside for middle of the night snacking to minimize nausea in the morning. 

• Sometimes chewing food makes you want to vomit. Drink shakes or soups/broth instead. Bone broth, ramen and lattes were my staples.

• Ginger in many forms can help with nausea but be aware that it can also heat up your body which the chemo does already and can cause hot flashes, night sweats or poor sleep. Ginger Rescue and Citrus drops are helpful for some people. I have found eating candied ginger and drinking hot water helps too.

• The associations you make in the hospital are powerful. You might feel nauseous just thinking about certain aspects of your stay. Try to create positive associations that replace the negative associations by visualizing going through your visit feeling strong, confident, and healthy. It takes a lot of effort to break these associations, but it is worth the effort.

• Meds can cause bad constipation which can cause other serious health problems. Eat lots of fiber prior to going into the hospital and with every meal while on chemotherapy.  It’s pretty easy to eat a stalk of celery with every meal and this will help prevent complications. Bring lots of celery, carrots and/or apples. You can also drink fiber smoothies. You can also purchase fresh smoothies from nearby restaurants that deliver. Fresh celery juice is an amazing stool softener and laxative. Drink 10oz -16oz depending on needs. Too much can cause diarrhea.

• The drinking water at the hospital can be pretty bad. You can bring a water filter or flavor your water with things like Liquid IV or a drop of stevia to help. 

• Food: You can bring your own food in an ice chest and heat it up in the microwave. You can also order from a restaurant and have it delivered to the hospital. 

• Snacking helps with nausea best, so bring lots of snacks. Bring a variety so you can figure out which foods work best for you. With each round of chemo I would develop nausea associated with the food I ate that round, so I had to vary my food with each round of chemo. It has taken some time to be able to eat certain foods again without the negative associations, but they do go away.

• Bring an electric kettle and make your own tea or instant broth or just sip on some hot water with ginger and honey.

  Preparing Your Room:

• When you first get to your room you can ask to have a refrigerator placed in your room.  You can bring your own food in an ice chest too, as the refrigerator is very small (only good for a six pack of pepsi or one plate cool). The refrigerator noise can be disruptive/annoying. I prefered an ice chest and you can get refills of ice from the grocery store or nurse’s station.

• The air in the hospital is very dry and can make your skin dry and itchy and make you feel incredibly uncomfortable.  Bring a humidifier and essential oils like lavender to moisten the air and soothe your skin. Everyone who entered my room said it smelled like a spa:)

• There is an adjustable thermostat in every room, use it to make yourself more comfortable. If something is not working in your room, ask for maintenance to come fix it. Ex. squeaky door, non-functioning TV remote, etc.

• Bring your pillow and favorite blankets from home. This ensures that you have what you need because sometimes the hospital actually runs out of supplies.

  Making yourself comfortable:

• You can wear your own clothes and bring things that make you more comfortable during your hospital stay. Anti-slip slippers or socks that are easy to put on are a must!

• Having a good sleep mask for your eyes is really helpful when the nurses come in at night; you won't be as interrupted if you’re still in the dark when they open the door or turn on lights. Make sure you have an ultra thick light-blocking mask.

• Bring headphones that plug into a headphone jack so you can hear the TV without all the outside noise. You can also bring an HDMI cord to connect your computer to the TV to watch movies on the TV.

• Hospital beds can be very uncomfortable. If you are experiencing a lot of pain from the bed, do not be afraid or embarrassed to bring a mattress topper. You will feel much better if you sleep better.

  What to do:

• 3-5 days in the hospital can be hard to take. Walking laps around the ward is one of the most helpful activities you can do because:

  • It moves your blood around and gets you to breathe. 

  • It helps your body process all the fluid so you won’t be as bloated and will have less swelling, which in turn means less discomfort. I only got bloated on the one day I didn’t walk laps.

  •  It helps to relieve your body of restlessness and general discomfort. 

  • It helps with bowel movements.

  • It passes the time. 

  • It gives you opportunities to talk to people and make friends. 

  • I especially enjoyed listening to an audio book or podcast while I walked.

• Making friends with staff and patients can help a lot! Talking to people passes the time and temporarily helps you forget about your own pain and nausea. If you are lucky, you will have a chance to develop some great friendships that are really supportive because only other people going through chemo understand what it’s all about. 

• Find a secret space or if your are lucky a courtyard to get outside for a bit, just make sure to keep your meds pole out of the sun.  

• Listen to audio books or podcasts. 

• Learn new card games or connect with others through video games.

• Try having online game nights with friends and family. Jackbox.tv is a great interactive game that anyone can join and you will share loads of laughs with minimal effort. 

• If you have a large group, have a friend organize a trivia night.   

• Expending mental energy will make you physically tired. The fatigue is real, especially at home in the days immediately following chemotherapy. Be kind to yourself, and know that your energy will return soon. 

Anxiety:

• Anxiety is debilitating. Learn to meditate and to ground yourself. It really helps. This is particularly helpful in the first few months when anxiety is at its highest because this is all new to you. Good books for learning about meditation are “The Power of Meditation” and “10% Happier”.  There are lots of meditation and visualization videos and apps online too, check out Jeffrey Allen on www.MindValley.com. These guided meditations and visualizations helped me more than I can say. There are other free services like Headspace.com. The Michael Singer books are really helpful after you have gone through chemo.

• Ask the nurses for a list of available services. Reiki healing, meditation, acupuncture, massage therapist, dog therapy, spiritual advising, and diet advice. Some of these services are available at different times of the month. I was really surprised when Reiki helped me get a deep relaxation.

• In time, you might experience PTSD from all the treatment you have undergone. You should seek additional therapy including EMDR and hypnosis to work through all the difficult emotions and experiences.

  Miscellaneous:

• A stronger body will endure the chemo better than a weak body! Getting strong in between rounds matters. Try to eat a lot of healthy food to keep weight on and keep your body moving by exercising. A stronger body also has a stronger immune system, which will help prevent infections you are susceptible to on chemo.

• People will ask if they can do anything for you. Allow yourself to take them up on the offer if you have a need or want. 

  • If you cannot drive or are using a wheelchair, tell them they can give you a ride to the pharmacy or help with your laundry.

  • Ask them to scoop your cat’s litter box! They never expect this and when you tell them you are kidding they will most likely be willing to do almost anything else for you:)

  • Tell them you just want to laugh or maybe talk for a bit.

  Short list of what to bring to the hospital

  • A water bottle

  • Humidifier, it gets dry and you can add nice smells 

  • Coconut oil or another body moisturizer

  • A beanie and sweater

  • A pillow and blanket from home 

  • Anti slip slippers or socks that are easy to slip on and off

  • Shower slippers

  • An eye mask for when the nurses come in at night

  • Headphones 

  • Pants and short, sweater and t-shirt

  • A computer

  • Any games you like
    
    

    Believe in yourself! It is possible to have positive experiences through this treatment, but you must believe it for it to be so.