If you have been diagnosed with cancer as I was in March, you may face the prospect of saying yes to chemotherapy — and going from whatever aches and pains you’re currently dealing with to several months of misery in the hope of killing cancer before it kills you. Here are some things you can do to prepare so this awful time can be weathered as well as possible.
You will need help, and for many of us, it’s very hard to ask for help. So think back on the times friends or family needed help, and how you wanted to be able to do something, anything. Tell the people around you what you need. Some will be able to give one small boost, and it may be just what you needed at the right time. Others will be incredibly generous, and you will feel awkward about it. That’s okay.
And yes, a few may be clumsy, overly directive, or factually wrong about the way they try to help you. Don’t take a friend’s miracle cure over your oncologist’s directions, and don’t let a well-meaning relative kindly bully you into anything. But accept the love that inspires this wrong kind of help.
Things you can get help with:
- Accompanying you to medical visits and asking the hard questions. Sometimes you don’t want to antagonize your doctor but you have pointed questions about their experience, your treatment options, the clarity of the diagnostic, etc.. Your friends can play “bad guy” for you; discuss your questions in advance.
- Filling medical and insurance forms. There is a lot of intimidating paperwork and a trusted friend or relative may be able to help you through it.
- Household chores. Not only do you need your home to be extra clean to ward off infections while your immune system is down, but that’s the very time when you shouldn’t be exposing yourself by doing housecleaning.
- Pet care. Between the need to stay away from sources of germs and your low energy, you may need help taking care of your pet, walking your dog, etc..
- Cooking. Meals frozen in small portions are ideal; make sure to discuss menu, dietary restrictions, etc. (see below for more on the topic of food.)
- Visits. You may not want to go out much and you’ll have to avoid crowds, so it may be very nice at times to have friends visit you, maybe bring movies or games for a little relaxation. (Friends, don’t drop in unannounced! Not every day will be good for this.)
- Chauffeur and errand runner. Your energy and concentration levels may not allow you to drive safely at times. In addition, as I discovered, if your habits include taking public transit you should change these habits either by going out less or by getting rides. Public transit is Very Bad for chemo patients; it provides high exposure to crowds and germs, and leaves you exhausted.
- Wheelchair attendant. Yep! I discovered, thanks to a friend, that museums have wheelchairs you can borrow. This can be a fun outing if you can stand moderate public exposure; museums are not as crowded as theatres. They are, however, surprisingly tiring and a wheelchair makes it possible to last for the duration of the visit.
You will lose your hair. You know that. Get a haircut that will minimize the sad shedding in the shower and on your pillow. Bonus points for getting something cute, even if it’s just for a few days; you can use all the morale boosts you get.
Some hair salons even give free cuts to cancer patients; for example, the chain Great Clips offers Clips of Kindness.
Chemo brings its own collection of joys, such as nausea, constipation, diarrhea, mouth sores, irritated skin, etc. You will bruise like a banana, and every little cut or sore will take a long time to heal. At a minimum, make sure you have the following handy:
- Stool softener
- Fiber supplement
- Aloe vera lotion
- Antiseptic ointment
- Hand sanitizer
- Ice packs and hot packs
In addition, if you have any recurring boo-boos, they will flare up and become potentially serious problems. Psoriasis, migraines, hemorrhoids, asthma, back ache — whatever it is, you have to plan for it. Make sure to have everything you need (check medication expiration dates!)
Medication and food log
It’s a good idea to keep a journal of what you eat and the medications you take. You’ll have to take many medications, some at fixed times, and when you’re feeling tired it can be hard to remember what you took when. In addition, if (when) something goes wrong, the medical team will want to know all this.
As for the food intake, it’s also good to keep a log so you can check whether you took in enough fluids, protein, etc.. Reviewing this log helped me adjust after my first cycle.
You will be very tired for a lot of the time, and you need to get good rest to recover. Create a nest where you can get sleep, really sleep and not just toss and turn.
Picture your best night of sleep and the conditions that made it possible. Now try to recreate that as much as you can. Whatever makes you feel most comfy and relaxed — fluffy pillows, a particular blanket, a soothing soundtrack — get it. If you need a new mattress but can’t afford it, see if you can at least improve it, maybe by placing a board between the mattress and box spring, or getting a mattress pad or cover.
Your nesting spot may not even be your bed, or you may have more than one: a particular lounge chair, a hammock in the yard, a reading nook, a sofa you like to nap on. Auxiliary nests are great!
If you’re not familiar with mental relaxation, you might also want to get some guided relaxation or meditation recordings (there are some on Spotify) to learn the technique. Letting go of your sources of stress and willingly sinking into your personal fluffy cloud helps get rest.
Freezer, cupboard and menu
Chemotherapy side effects include nausea and gastrointestinal disruptions. The anti-nausea medications work pretty well (take them as soon as needed!) but your appetite will be non-existent much of the time. Moreover, the medications will affect taste in ways that vary from one patient to the next and over time (in my case, sweet, bitter and spicy tastes were increased, while umami, sour and salty were decreased.)
You still need to drink a lot of fluids — at least 2 L or 68 oz. a day, not including anything caffeinated — and take in enough protein and vitamins to maintain strength, fuel white blood cell production, and keep your weight constant (since your infusion dosage is based on weight.) In the name of all that you hold dear, do not allow yourself to dehydrate; it makes everything else worse. Keep sipping.
Plan on having at least the following in your cupboard:
- Drinks (coconut water, Gatorade and Pedialyte are good to replace lost electrolytes)
- Soups and broths
- Peanut butter
- White rice and pasta
- Canned salmon, tuna, shrimp
The oncology department or the local Cancer Society may provide nutrition classes; I found this to be very helpful and I recommend taking such a class as early as possible in the course of treatment. Two of the most useful pieces of advice I got were:
- Eat by the clock, not by appetite; don’t wait until you’re hungry, eat a little every two or three hours. You won’t be hungry for regular meals.
- Eat bland, gentle foods; use your blender to mash up soups if mouth sores or inflamed tonsils make it difficult to swallow. Smoothies are also a good idea, and you can fortify them with protein powder or wheat germ.
Get a big wall or desk calendar (dry-erase is best) and plan your weeks around the chemotherapy schedule. The week right before an infusion is the one when you’ll be strongest, so you have a little more leeway in activities; after the first cycle you’ll know when your weakest time is (for me it’s Days 5 to 12). Inform your friends in advance if they are trying to plan something you want to attend.
Scarves, hats, wigs
Even with hair loss, you can be stylish. Or at least protect yourself from the elements (you don’t want a sunburn on your head, trust me) and infection (yes, you can get an infection through your follicles.) I told my friends I wanted scarves instead of flowers — because yes, you can get infections from flowers when your immune system is down! — and they provided me with a huge assortment of lovely scarves I can match to just about any outfit.
Once you lose a lot of hair, you may also find, like me, that you get cold. Some warm, soft caps or turbans are nice, even for sleeping.
Some nonprofit organizations and even stores offer free scarves and wigs to cancer patients; see the links below for more information.
Playlist, viewing list, reading list, games, crafts
You will have a lot of quiet times during chemo. You can prepare by assembling entertainment: movies, books, music, audiobooks, games, yarn if you like to knit, etc.. Physical supplies need more advanced preparation, of course, but the truth is there will be times when even flipping through Netflix titles to find something to watch will seem like a chore, so having your list ready is comforting.
With the help of friends, I have even gathered a number of two-player games that take little enough space that my husband and I can play them on a little tray during infusion sessions at the oncology centre. It makes time pass faster.
Links of interest
- American Cancer Society: Find Support & Treatment
- American Cancer Society: Resource Search (by area and type)
- Bay Area Cancer Connection: Newly Diagnosed
- BAYS — Bay Area Young Survivors: Resources
- Canadian Cancer Society: How We Can Help
- CancerCare: Chemotherapy
- Cleaning for a Reason: a nonprofit that gives free house cleaning for women undergoing treatment for any type of cancer.
- Elle: Fashionable Hijabs
- TotalBeauty: 14 Ways to Tie a Headscarf
- xoVain Tutorial: How to Wrap a Tignon