Cِancer treatment can be a daunting process. Remember, the goal is to come through it with body and soul intact. To that end, there’s one piece of advice I want to offer above all others: Please don’t try to go it alone. I know how hard this is for many people. A cancer diagnosis is so frightening and can threaten the foundation of your self-image. In the days following a diagnosis, you may feel you’re drowning in confusing torrents of information and emotion. A bewildering array of treatment options and potential consequences may tie you in knots as you try to make some sense of this thunderbolt striking deep in your life and reverberating off everyone and everything you hold dear.
That is a whole lot of shaking going on. Like most people caught in an emotional earthquake, you may feel one of two instinctive desires: to pull a blanket over your head and duck for cover, or to run out of the house and flee the situation as quickly as possible. Unfortunately, neither reaction will work as well as it might in a real earthquake.
But don’t despair! I’m going to show you how to put together a support team no matter what your circumstances. Don’t think that asking for support is a sign of weakness; you think Neil Armstrong walked on the moon by himself? Your support team can help you accomplish the all-important goal of staying well nourished during treatment. Equally as important, the team approach will keep your family, your friends, and, most importantly, you from feeling overwhelmed or fatigued. It’s important to avoid burnout, because treatment and caregiving can go on for quite some time.
Being Open to Receiving Support
Think of creating a support team as a business investment, with team members being your capital. I’m sure you’ve seen businesses fail not because the idea wasn’t great, but because the owners hadn’t raised enough capital to get the company up and running properly. By raising your human capital first—the right number of people doing jobs they like and organized to make the best use of their time and energy—you can make sure someone always has your back, at least in terms of meals. And good organization will be a great relief to you because you’ll know that those who are helping you aren’t being drained or burned-out in the process.
This may sound funny coming from a nice Jewish girl, but it’s all about letting go of the guilt—and maybe some pride as well. A lot of people who get a cancer diagnosis feel guilty, or believe that they brought the disease on themselves in some way. Not only is that kind of thinking self-defeating, it can interfere with your recovery. According to Lenore Lefer, a psychotherapist who works with cancer patients and their families, “The best thing for a healing experience is a very positive, loving inner experience.” This isn’t some sort of new age philosophy; stress actually increases levels of corticosteroids, hormones that can impair immune function. While cancer by its very nature can be an emotional roller-coaster ride, Lefer says it’s important to try to manage the stress. “When you’re in a healthier frame of mind, your cancer has a harder time being present.”
Hopefully I’ve sold you on the idea of creating a support team. Now you’re probably wondering how best to go about it. The place to start is a serious discussion with your significant other or whoever is likely to be your point person for the endeavor. This is usually a spouse or partner, but it can be a child, parent, friend, or neighbor. If you’re used to taking care of yourself or if you live alone, this is the time to reach out to support groups or other organizations that can help, be they spiritual, fraternal, or community resources or social service providers in your area.
Regardless of who the point person for your culinary team will be, the conversation will be much the same and should focus on clearly defining roles, as it’s almost impossible to drive when two or more people have their hands on the steering wheel.
Cancer nutrition specialist and registered dietician Suzanne Dixon provides a good perspective on this issue: “I used to see people in my clinic practically coming to blows over whether the caregiver was doing what they thought they should be doing and whether the patient was doing what they thought they were supposed to be doing. I’d see a patient and he’d say, ‘She’s always trying to cram food down my throat. I don’t feel like eating, and she’s shoving food under my nose and I feel sick! ‘ And then the caregiver would say, ‘I fixed him this wonderful milkshake and I put in everything that he asked for, and then he wouldn’t touch it. He wouldn’t even look at it. And he knows he’s doing it just to be an ass! ‘”
The truth is, just as patients need to let go of guilt and pride to prosper, caregivers need to temper their neuroses. It’s so easy, and incredibly unproductive, for caregivers, especially spouses, to look at a cancer diagnosis as the ultimate judgment of their caregiving skills. They project all of their fears of possible loss onto the patient, thinking “If I don’t do this perfectly, I’m going to lose this person. Then what will become of me?” The hypervigilance that results can be suffocating, and loved ones can turn into combatants firing repeated first strikes, rather than cooperative collaborators. Where’s the joy in that?
As strange as it sounds, there can be great healing of not just the body but the heart and spirit during treatment. An outpouring of support—even something as seemingly everyday as dropping by with food—can provide an uplifting counterbalance when you’re feeling down. “Patients see how many people love them, how many people are willing to come and visit and bring meals,” says Lenore Lefer. “It encourages them to open up to love, hope, and nourishment in ways they might not have before.” Lefer has watched as patients embrace the help they’re receiving, and in the process become more interested in their health and looking toward the future. “People begin a meditation or yoga practice; they start things that enhance the quality of their life even though they’re sick,” she says.
Reconciliations, recognition of roads you might rather have taken, and even movement in that direction aren’t the first things that pop into mind when you think of a cancer diagnosis, yet they are real. Perhaps they confirm the Chinese concept of crisis—written in their language as two characters. One signifies peril or danger. But it’s the other character that I choose to pay attention to. It signifies opportunity—opportunity for change, for nourishment, for happiness, for community. For a chance—not a guarantee, mind you, but a chance—to embrace life even while in the throes of serious illness.
Okay, enough philosophy. If the name of the game is eating well during treatment, what exactly does that mean and how are you going to get there? Succinctly, these are the goals:
- Switching from fewer, large meals to smaller, more frequent nourishment
- Having a wide variety of prepared food always available, 24/7, so you can eat whenever the mood strikes, including during treatment sessions or hospital stays (for the best way to store and transport food, take a peek at Kitchen Smarts).
- Creating a stimulating environment that engages you in enjoyable mental and physical activities, which will lead to improved appetite
- Organizing the team so that everyone benefits from the effort, instead of exhausting themselves or ending up at each other’s throats
Now let’s look at the details. Many experts say that instead of looking at three large meals a day, the goal should be less food more often. How much more? UCSF oncology nurse Theresa Koetters says, “I try to preach six small meals a day, using a small plate so it’s not overwhelming. Take just three bites.” If Koetters’s suggestion sounds impossible, just think of all the times in a day you reach for food—we’re talking anything from a pretzel to a potato. That makes it pretty easy to come up with six.
For someone whose appetite is lagging, the best advice I received in researching this book was that sheep have it right. You never see ewes sitting down to a three-course meal. They graze, and that’s the best approach for anyone whose appetite is on the wane. Instead of chowing down, just try nibbling throughout the day, especially those days when the thought of food doesn’t exactly appeal. It’s not the amount that matters, it’s the attempt.
Suzanne Dixon says, “I tell my patients, ‘Just set your watch alarm to go off every fifteen or twenty minutes, and then take literally one bite of food. Then go about your business. Twenty minutes later, take another bite of food and again go about your business. Because no matter what’s going on—taste changes, nausea, or just plain lack of appetite—you can probably tolerate a bite here and there. You have to let go of what constitutes normal eating for you. You have to be flexible.’”
Some of my clients, those who like to make lists and check off items as they go through their day, really enjoy the challenge of getting in their six “good bites” a day. A friend who was helping her father when he was sick says he carried around a little clipboard and faithfully marked off what he had eaten and when. Another woman I know takes a thermos to work with her so she has something nutritious to sip on all day: Some days it contains mineral broth or soup, other days tea, and sometimes a protein-rich smoothie.
That brings up an important point: Lots of people work during treatment. With a little planning, it’s easy to get lots of nourishment on the job (and I don’t mean out of a vending machine). If you have a refrigerator and microwave at work, you can easily bring a reheatable meal from home. Take a look at chapter 6, Anytime Foods. It includes a section on foods that are especially portable, like wraps and spiced toasted nuts. The only problem you might run into is moochy office mates who try to hone in on your goodies.
Of course, work isn’t the only situation that might take you away from home for an extended period of time. Sometimes treatment takes a long time, and sometimes a stay in the hospital is unavoidable. Talk about disconnecting from delicious, nourishing food! “You love your patients,” says Gerry Mullin, MD, “and when you see what they’re fed in the hospital, the junk, it’s just heartbreaking, especially because their appetites are gone to begin with.” Typical hospital food is so devastatingly unappetizing that it directly contradicts the crucial message “Eat! Eat!! “ touted by more progressive doctors. In the hospital setting the food is undesirable at best.
But it doesn’t have to be that way. In terms of food, even the hospital setting can allow for an affirmation of health as opposed to a constant reminder of illness. Few hospitals have regulations against bringing food in (and if they do, switch hospitals the first chance you get). If you plan on having food brought in during a hospital stay, I suggest using a large thermal carafe or airpot, which can keep large amounts of liquids hot or cold for hours. Then all you’ll need is a good supply of paper cups and napkins, and you can reach for nourishment whenever the mood hits. If you have meals brought in, my suggestion is to do so in a way that will make the nurses love you: using disposable paper plates and cups and plastic utensils, and having your support people take the garbage away. Depending on what you’re eating and your relationship with the nursing staff, you might want to have a little extra food on hand for whoever is on duty. If you need access to a microwave, you can often find one in the cafeteria, or there may be one you can use that’s closer to your room. Ask the nursing staff about that possibility.
When psychotherapist Lenore Lefer’s thirty-year-old son, Matt, was undergoing treatment for sarcoma, she often brought him his favorite meals. “Eating was a very big thing for Matt,” says Lenore, whose son found an interesting relationship between eating and alleviating nausea early on. Matt reflects, “When I was eating, I was stimulating a physiological response. I discovered that nausea and appetite didn’t coexist well. Eating reduced the nausea. Also, when I was eating, I visualized all the nutrients going to all the cells in my body and boosting my immune system.” Matt’s mom took advantage of her son’s desire to eat. “I would bring anything he wanted to the hospital,” says Lenore. “If he wanted a steak sandwich, he got a steak sandwich. If he wanted tofu, he got tofu. As his mother, I was thrilled that there was some way I could be useful to him: to make him chicken soup on a Friday night, and to make sure he had those things that were meaningful to him.”
That sense of being able to contribute is so important, not just for frontline caregivers, but for friends, neighbors, coworkers, or anyone who is watching you go through this illness and wants to help but doesn’t know how.
The Benefits of Exercise and a Healthy Attitude
I used to think about building a culinary support team in terms of food; finding people who wanted to shop, transport, prep, and cook. But people in treatment need additional support: friends willing to stop by for a chat, some fun, maybe a movie, and many of the other activities you did together before your diagnosis. This is especially true of exercise, which when combined with the power of yum can really crank up the appetite. The irony is that doctors used to restrict activity for cancer patients … until numerous studies convinced them otherwise. “Years ago physicians told cancer patients not to exercise because it was too strenuous during treatment,” says Jeanne Wallace, a nutritional researcher with a clinical cancer practice. “Then they ran clinical trials in the U.K. and found that those put on exercise programs thrived. Their energy levels were better, and they tolerated treatment better. They found it was beneficial to initiate an exercise program during chemotherapy.”
I’ve seen firsthand the effect exercise has on appetite and how friends can help patients stay active. One of my clients had a ritual where she and a friend would go off on a long walk or bike ride before I came by to give her a cooking lesson. Even though she was in the middle of breast cancer treatment, the exercise always left her hungry, and it wasn’t too often that she left any food on her plate.
This particular client embodied the idea that a cancer diagnosis doesn’t mean you have to act like you’re sick. This is a concept I’ve seen embraced even by people who were in a terminal stage. Did it improve their outcomes? A statistician strictly measuring quantity of time might say no. But having seen these people bound and determined to wring every pleasurable moment out of whatever time they have, I’d have to vote in the affirmative. Many was the day when I’d walk up the driveway of this client’s house and see her and her friends in the kitchen bopping to big band music blaring from the speakers. (She said the music reminder her of her favorite cook, her grandmother.) If there was anyone in that kitchen who identified with being sick, I sure couldn’t tell.
That’s what having a culinary support team is all about. No, I’m not Pollyannaish about treatment; sometimes it just plain stinks. No dancing. No smiling. Just long days. At those times, a culinary support team is a lifeline that provides a bit of respite, and you’ll appreciate knowing that there’s one less burden to bear. Just knowing that a healthy meal for you or your family is waiting on the doorstep in a cooler can be a great relief. A cooler, by the way, is a great way to deliver food. Some patients refuse help because they don’t want people to see them in their house while they’re sick. Having food dropped off on the porch in a cooler solves that problem.
There are many ways to put together a support team. Though there are many good websites devoted to the topic (Resources), I’d suggest starting with a book. I recommend Share the Care, by Cappy Capossela and Sheila Warnock. These women wrote the book after their own experience caring for a sick friend, and it speaks from the heart.
Here are a few suggestions that apply to any support team, whether it’s a team of three or thirty:
- Give people tasks they enjoy.
- Have only one captain to delegate assignments.
- Rotate the captain weekly, if possible.
- Take everyone’s emotional temperature every few weeks to make sure no one is getting crunched.
- Recognize that caregivers have other responsibilities they need to attend to.
- Always keep feelers out for other people who want to join the team, as it’s normal for some volunteers to drop out over time. (Remember, treatment can last a year or more.)
- Google Calendar is a great resource that can allow the captain and all team members to see online what tasks need to be accomplished. To use it, you’ll need to have a Google account. For more information, search the Internet for the term “Google Calendar.”
Here are a few final thoughts, things you might want to address as soon as possible after diagnosis.
WHO KNEW? Exercise Is Beneficial during Treatment While I don’t suggest that you train for a marathon in the midst of treatment, a little exercise does improve outcomes, and Dr. Keith Block says you don’t even have to get out of bed or off the couch. He recalled asking a patient bedridden with hip cancer if she’d be willing to work out. “She said, ‘Are you nuts?’” Block explained to her that it’s possible to get a decent workout from even a simple set of isometrics; for example taking your foot and pointing your toes first up toward your eyes and holding for five seconds and then down toward the floor for a count to five. Repeating these sorts of exercises for various muscle groups in sets of twenty over the course of a day can provide an effective workout.
Talk to your oncologist or family physician about treating depression. Depression and cancer are a common pair, yet depression is often ignored during treatment. This has many downsides, including putting your appetite at risk. As psychiatrist Jim Gordon explains, “Chemotherapy can be depressing. I’ve observed it. It so saps the energy. It’s very hard to be upbeat on some of the powerful regimes that are available. You have to address it; chemotherapy depresses appetite and depression depresses appetite. Many of the same nutrients that are depleted in any chronic illness are also depleted in depression, so you need to have a healthier diet. By choosing food wisely, preparing it well, and enjoying eating it, you are actively engaged in your own healing, overcoming the feelings of hopelessness and helplessness that are the hallmarks of depression.”
Set up a consultation with a dietician or nutritionist who has experience with cancer patients. Here’s a well-earned plug for fitting a nutritional consultation into your cancer care. According to registered dietician and nutritionist Suzanne Dixon, more than a dozen studies show that patients who do so are far more likely to complete treatment. “The people who see dieticians do much better,” says Dixon. “They also have fewer side effects. There’s a study looking at radiation therapy treatment, and the people who saw dieticians had 90 percent completion of therapy and the people who didn’t had 50 percent completion of therapy. When giving lectures, I used to tell this to doctors all the time. When they’d say, ‘You can’t prove that food will prolong survival.’ I’d say, ‘Well, let’s look at it this way: raise your hand if you’re really excited when you can give your patient only half of the intended treatment.’”
Make sure you’re eating what you want to eat, not what someone else wants you to eat. Here’s a a situation I’ve encountered all too often: I’ll do an interview with a person in treatment who makes it blazingly clear he or she can’t stand a certain food—say sweet potatoes. When I relay that information to a caregiver or a caregiver shares that information with others, someone invariably says, “Oh, but he hasn’t tried my sweet potato recipe.”
Sigh. This is not about who won the blue ribbon at last month’s county fair. This is about eating foods you’ll enjoy. Your culinary support team shouldn’t assume they know what you want to eat or should be eating. Treatment and cancer can change food preferences, sometimes drastically. If necessary, use the questionnaire from chapter 1 to initiate a conversation about the foods you’d like to have available. If you aren’t sure on any given day, browse through the recipes in this book. Sometimes just seeing the pictures is enough to get your appetite stimulated and say, “Yeah, I’d really like that.” To a caregiver, those can be the most beautiful words in the world.
Food Storage Tips
It’s worth a moment of your time to think of how you’re going to store these wonderful meals once you’ve made them. The first time I made soup for an ill friend, I delivered it a monstrously huge 8-quart container. It quickly dawned on me—and my friend—that unless she drowned her family in soup for dinner that night, there was no way to fit the container in her freezer, and she didn’t have any smaller containers to store it. I learned a lot from that experience, and want to save you from similar pitfalls. These tips for making, storing, and delivering food in the safest and most practical manner insure everything’s good to the last drop, even weeks or months later.
- Build a freezer inventory so that you have broths and cooked dishes on hand in easy-to-use portion sizes. Be sure to think about the size of your freezer so that you don’t end up with more food than storage space.
- Freeze food in sizes you will use at one time. One, two, four, and eight-cup sizes are convenient and freeze well.
- Label all of your containers with the date, contents, and quantity. A permanent marker and blue painter’s tape (looks like blue masking tape) work great.
- Do not use plastic with hot liquids. To speed the cooling, put the container in some ice water in the kitchen sink or a large dish and stir the soup occasionally.
- When freezing liquid, leave ½ to 1 inch of space at the top of the container to allow for expansion.
- As a general rule, fruit and vegetables will stay freezer fresh for about eight months, meat and poultry for three, and fish and shellfish for up to six.
Cooking and Reheating Tips :
- Use cast-iron or stainless steel pots and pans for cooking instead of aluminum and nonstick surfaces.
- To prevent bacterial growth, thaw frozen food in the refrigerator or in cold water, not on the counter. If thawing in cold water, change the water every 30 minutes. Frozen meat should always be thawed in the refrigerator, which can take up to 48 hours.
- Avoid using the microwave to reheat food. If you decide to reheat food in the microwave, avoid reheating in plastic containers and use glass or ceramic containers instead.