Author: sarambarton

Some patients’ cancer is caught early on, when it’s possible to intervene and predict a rosy future. Other patients find their cancer has advanced to late Stage 3 or Stage 4 by the time it’s discovered. For them, doctors often scramble to find acceptable options that can have a positive effect for cancer that’s already out of control. But for many patients, their cancer is caught in that middle ground, when it’s not really horrible enough to be critical, but also not easily treated and forgotten.

 It’s so hard to keep the fears at bay when there is uncertainty. When a patient hears that the prognosis is good, the glass is more than half full, so it’s easy to keep one’s optimism going. But when a prognosis is “wait and see”, and the patient is looking at the potential of having repeated treatment courses over the next few years, the glass is less than half full. How does a heart not feel disappointment over the prospect of handling all that uncertainty?

More importantly, how long will it take for doctors to feel confident that the cancer has been controlled enough for a patient to begin planning his or her future? Two years? Five years? During that time, there will be no promises, no guarantees, no certainty that the treatment is working.

How does a caregiver help a cancer patient get through that long, seemingly endless wait? How can you help your loved one stay focused and motivated, even after cancer treatment ends and the next months are spent waiting to see the results of the next body scan?

First, consider this. What are the goals of your loved one over the next year, and are they reasonable? Sometimes cancer patients stop living while they wait to find out if they are going to survive the cancer. Imagine putting your life on hold until you know. Think of what that means. You can’t make any long-term plans until you’re sure you will be available the following year. What does that say about this year? That it’s not worth living?

Second, what is the condition of your loved one at this moment in time? What is he or she capable of achieving and what kind of support will help him or her get it done?

Third, how will you feel if you let your loved one languish during the wait for news, especially if it turns out the news isn’t good? Will you have regrets that you didn’t take the time to help your loved one to complete achievable goals now?

If your loved one is treading through that great “unknown”, when it’s impossible to know how all of this will work out in the end, seize the day. Take what is before you and make it matter. Understand the role of worry and stress on patients and the damage that can result. If your loved one spends the next year in an emotional limbo, that will result in greater stress, and that stress often has real physical manifestations. Your goal, as a caregiver, is to help your loved one be as healthy as possible under the circumstances. That means understand that stress over time can do great damage to the physical body, but it can do even greater damage over to the heart and mind.

If your loved one puts his or her life on hold while waiting for the results of cancer treatment, he or she will begin to direct all energy towards waiting and wondering. It becomes a habit to stick to the sidelines of life. When the wait is over, what will your loved one have to show for all that sacrifice? If the news is good, your loved one will need to get back to normal activities, but he or she will still have to work through that anxiety and fear that the cancer is still dangerous. If the news is bad, he or she will have lost all the time spent waiting, without a positive outcome waiting in the wings.

That is why it is so important to embrace the here and now and make it work for your loved one. He or she probably won’t be able to climb mountains or leap tall buildings, but if there is a dream that’s achievable, now’s the time to go for it.

Sometimes it’s not easy to live in the here and now. Your loved one may hesitate for fear of not being able to finish reaching for a dream. That’s why it’s important for you, as caregiver, to help your loved one focus on the achievable goals and to make the effort to get to each finish line. Build on each success as it’s achieved. When your loved one reaches the first, start planning the second. Not only will this help improve the confidence level, it will create a more positive momentum. You’ll both find the long wait feels shorter and that time goes by more quickly because your loved one is focused on living, not dying. However things turn out, you will always have these moments that you shared, and the goals that are reached will be part of your loved one’s history, regardless of what course cancer takes.

Cancer is a tough foe. Patients often find themselves thrust into intensive cancer treatments. There might be radiation, chemotherapy, surgery, or a combination of these. Sometimes patients are treated daily. Between the time spent at the hospital or cancer center and the time spent dealing with the side effects of treatment, there’s little time left to keep up with normal activities. One of the first things to be sacrificed is socialization. Without it, patients often don’t have the human connections they need to feel human.

In a lot of ways, going through cancer treatment is a lot like going off to war. The patient’s attention is focused on getting rid of the cancer, and so much energy is devoted to that goal, because without it, there’s little hope of survival. Most cancer patients have an immediate circle of support. It might be a spouse, children, or parents. It might be a close friend or two, a cousin, or sibling. But as cancer treatments move along, there is sometimes a tendency to keep to that narrow circle, and other relationships can fall away.

Some of this is the result of the demands of cancer therapies. Vulnerable patients with a risk of infection learn to stay away from crowds. Or they find they just don’t have the energy to get out and about as easily. It’s an effort to go through treatment and still have an active social life. Some patients even begin to withdraw from social opportunities for fear of seeing that pity in the eyes of people who care.

It’s important for caregivers to help cancer patients engage in pleasant social interaction. Sometimes, it’s a matter of adjusting the opportunities to fit the capabilities of the patient.

I learned over time that my mother was wiped out after chemotherapy two days after a treatment. It would hit her like a brick and she would barely be able to keep her eyes open. She felt it was weakness on her part that she couldn’t fight the fatigue, until she learned from several younger  patients at the cancer center that they felt the same effects. One of the benefits of talking to other patients is that you begin to learn what is normal during treatment. Some chemotherapy drugs can really knock a patient for a loop, and when you begin to understand the pattern, you can begin to plan social outings that are much more enjoyable. Every patient is a little different in experiencing the side effects, but once treatments start, you can begin to see the onset of side effects as they commence.

For my mother, it was important to know that what she was feeling was the drug, not the cancer. That helped her to let go of some of the fear of the fatigue. We knew that she felt good the day of treatment and the day after treatment, so we would plan outings for that time. We also knew that by the weekend, she’d feel more like her old self again, so that allowed us to plan more opportunities. But in the middle, when the side effects took over, there was really no sense in making plans. Accept what you can’t change and change what you can.

Another symptom we noticed for my mother was that she had little energy in the evening. Her peak hours were from 11 AM to 3 PM. That gave us the chance to go out to lunch, visit a museum, take a picnic to the lake, or even take in a movie matinee. If she was really exhausted, we sometimes brought a companion wheelchair along, just in case. If she was feeling good, she wanted to walk. And walk she did. She enjoyed herself immensely on these outings. She felt connected to the world again. Very often she would start conversations with strangers, share laughs with old friends, and see new sights. She still wanted to explore and experience life. She needed to do this. It made her feel human again.

Sometimes, when I was feeling ambitious, there might be a dinner party for family or for friends. I would start the food preparations ahead of time. I often took shortcuts and kept the menu simple. I let other people bring food, instead of trying to do everything myself. But most of all, I let my mother do what she most loved to do, and what she most missed when cancer sapped her strength. She got to be hostess to her guests. She sat at the dining room table, opposite my father, and socialized with the people who mattered most to her. She knew she couldn’t do the party clean-up any more, but once in a while, she could find the strength to sit at the table and have fun. Once she stopped worrying about all the “extra work” she was making for us and understood we wanted her to have fun, she let go of her guilt. She would rest up in the hours before the party, while my father and I got all the preparations done.

If you are caring for someone who is going through cancer treatment, remember that there are little ways in which you can use your creativity and caring to help someone still feel connected. Even if it’s picking up pizza or a prepared meal for a group, do it. Or invite friends for pot luck. Let someone bring an appetizer, someone else a salad, someone else a dessert, and so on.  Laugh together. Share the fun. Celebrate the little moments in life. It’s important that we always remember that we have these moments and that we use them to full advantage. Sometimes the greatest healing takes place in the heart. Cancer patients can be weary from all the rigors of treatment. Sometimes the greatest toll is emotional. Having a chance to put cancer aside for a few hours and feel like a normal person again can be priceless.

When you’re faced with a cancer diagnosis, there is a lot to do. You have to understand your treatment options, the risks, the side effects, and all of the related issues that accompany it. What can a cancer coordinator do to help a cancer patient navigate treatment? 

A cancer coordinator can accompany you to medical appointments. It’s helpful to have someone with whom you can share your thoughts and feelings about your treatments. Your cancer coordinator can take notes, whether it’s to help you remember the questions you wanted to ask your doctor, or it’s information the doctor wants you to have. It helps to have a support system when you are taking chemotherapy treatments, getting radiology, or preparing for surgery. you have so much on your mind. Your cancer coordinator can even drive you to and from appointments, help you make sure your nutritional needs are met, and be your eyes and ears when you are too emotionally overwhelmed to fully absorb information on your situation.

One of the best parts of having a cancer coordinator is that you know you’re not going through this alone. Go to any major cancer treatment center or hospital, and you will see cancer patients with family members or friends by their side. My mother used to arrive for her appointments with her “peeps” in tow. We would carry her medical equipment, push her wheelchair, fetch magazines and soft drinks, and even head down to the cafeteria to grab her a bite to eat when she was hungry. This meant that she could relax a little and put her focus on getting through her procedures, because we were there for her.

Cancer coordinators can also be helpful with reminding patients about the positive aspects of their treatment and in understanding the negative aspects. When you start chemotherapy treatments, it takes a while to recognize the pattern of side effects. Patients don’t always understand that fatigue is very real after certain chemotherapy drugs are administered. Having someone who knows what you’re going through can be important. You shouldn’t feel like you have to take on the world by yourself or that you need to tough it out. Sometimes you need someone by your side a couple of days after treatment, when you’re so exhausted you can’t see straight. There’s a lot to be said for TLC.

Who can be a cancer coordinator? Anyone you think will be steady and reliable. It can be a spouse, a sibling, or any other relative. It can be a friend or neighbor. It doesn’t even have to be just one person. You can have more than one person fill that role.

The important thing is to realize that when you build a support system for yourself, you are allowing people to understand your situation, so they can better help you get through the cancer experience. A cancer coordinator can do a lot of physical things to support you, but he or she can also help you to stay positive and focused. Having a good attitude during cancer treatment can enable you to have a better life. Remember — just because you have cancer, it doesn’t mean your life is over. You have to find ways to reach out and embrace the here and now, to live it to the fullest. Sharing your cancer experience with your cancer coordinator can provide both of you with a deeper, richer opportunity to understand just how powerful life can be.

When my mother was going through cancer treatment, her appetite was often poor, especially before her tumor shrunk. Too weak to make her own lunch, she would often wait for me to offer her some sustenance. And more often than not, the choice was a grilled cheese and a glass of milk. If she had had her druthers, she probably would have had one every day.

People who are frail and easily exhausted have a difficult time eating enough calories to nourish their imperiled bodies. That’s when comfort food offers a great opportunity for your loved one.

What are some of the common comfort foods? Macaroni and cheese. Ravioli and pasta sauce. Meatloaf and mashed potatoes. Milkshakes. Scrambled and poached eggs. Ice cream. Yogurt. Sherbet. Chicken soup. Stew. Notice anything important about this list? Almost every one of these foods is easily chewed. You get maximum pleasure with little work.

For many cancer patients who are undergoing a gruelling treatment program or who are frail from the disease, comfort foods are a lifeline. They often have great difficulty consuming enough calories to keep them going. Why? Because eating is hard work. Think about how hard it is to chew a steak or a raw carrot. You want to eat an apple? Be prepared to chew. Chicken and turkey are tasty, but you have to work at it. Soft foods, like mashed potatoes and peas, go down easily.

If you have a loved one who finds eating to be difficult, try sneaking in some extra calories in a milk shake. You can add protein powder to ice cream and milk, and sometimes even a little peanut butter. Whip it up in a blender, and not only can you provide a lot of calories, the shake will taste so much better than a lot of the nutritional drinks on the market.

If your loved one likes nuts, but doesn’t have the energy to chew, why not grind them up in a food processor or mill, and add them to foods like pancakes, muffins, or as a topping on ice cream. Nuts are a healthy way to get protein and essential nutrients.

Be creative when you offer up foods that don’t require a lot of chewing. If your loved one likes burgers, but is unable to eat a whole one, try making sloppy joes. Be sure to break up the hamburger, ground turkey, or bison before adding the sauce. If hamburger buns are too much effort for your loved one, try serving the sloppy joe mix on a couple of pieces of bread.

Some cancer patients find it’s easier to eat little meals throughout the day. Noshing has its benefits. If it’s impossible for your loved one to eat three big meals a day, don’t despair. Provide the calories throughout the day and your loved one will likely be able to eat more. If you know your loved one’s appetite is good at breakfast, okay at lunch, and terrible for dinner, pack as many of the day’s calories into that breakfast, and try it again at lunch. Do the best you can with dinner and for an evening snack.

Remember that you’re trying to provide comfort. Food should be a pleasurable experience. If your loved one seems unmotivated, try reminding him or her that the healthier the physical body, the better the chances for the cancer treatments to work.

If you’re caring for a loved one who is going through cancer treatment, there are some important things to consider in how you approach the situation. Good caregiving isn’t about taking over the care of people. It’s about empowering people. It’s about finding ways to help people remain as independent as possible on as many levels as possible, while accommodating their limitations.

Kids know they are dependent on the adults around them. When they are facing the loss of their capabilities, they don’t worry as much about surrendering their independence. They often enjoy being nurtured. Sometimes it’s tough to push kids towards doing more for themselves.

Adults, on the other hand, usually love their independence. They want to come and go as they please. They want to make their own decisions about their lives. And losing these opportunities can result in great frustration, depression, and anger.

Cancer treatment sometimes can interfere with the thinking process, not just the physical body. People develop “chemo brain” because chemotherapy often affects the nervous system. When my mother was going through chemotherapy, it affected her ability to play Scrabble and do her beloved crossword puzzles. There are ways to compensate for this kind of loss of ability — for example, using a dictionary while playing Scrabble and making the game less competitive and more cooperative can help. Focus on building upon the words, not upon counting the scores. If you offer up some help, you are changing the atmosphere of the game-playing and adding an element of camaraderie that can take away some of the sting of “chemo brain”. You’ll have plenty of time to be competitive again when your loved one gets over the effects of the chemotherapy.

I found there was little that could take away my mother’s pain over not being able to complete a crossword puzzle. That was a big loss for her during chemotherapy, because it was in activity in which she excelled. She always worked the puzzle in ink, zipping through it. I bought her a crossword puzzle dictionary, which she kept on her side table. But the biggest help sometimes seemed to be having the opportunity to ask me, “What’s another word for….” We would discuss the possibilities. My mother knew I was not adept at crossword puzzles. (You could tell me the world is about to end and the only way to save it is to complete the crossword puzzle in front of me. Trust me — we’d all be goners.) By engaging in dialogue, she could stimulate her brain to focus better, and that would often allow her to recall the appropriate word.

Mental focus and clarity can be dimmed by chemotherapy. We found that out when my mother really wanted to drive again. The neuropathy was already an issue, and she wasn’t able to control her limbs as well as she wanted. But she really wanted to drive again. I followed the doctor’s recommendation to take my mother out somewhere and let her practice first, before hitting the open road, to see how she would fare. It didn’t go well. There were too many things for her to do, her timing was off, and she started to panic. Chemotherapy can really affect actions and reactions.

What do you do if your loved one is affected by “chemo brain” and neuropathy, to the point that it interferes with independence? Obviously, someone who is that impaired should not be driving. But are there other options that can help your loved one feel a sense that he or she still has some independence?

If you make errands more of a social opportunity than a chore, and if you combine it with pleasurable activities, like grabbing a bite to eat at a favorite restaurant, you are putting your loved one in the position of being more equal to you, because you are getting something out of the experience, too. See how that works? Dependence means you cannot function without assistance from someone stronger than you are. But if your loved one has something important to offer, and it helps to equalize the relationship, that can make a big difference.

My mother loved to eat out. There was nothing more fun than being in a crowded restaurant and watching life happen. She was a people person, and being home because she had physical limitations seemed to steal the life out of her. Throughout her cancer treatment, we adapted our activities to fit her special needs. When she was feeling good, we would pop into local restaurants. One of her favorite places was a family-owned breakfast and lunch place, where the waitresses and bus boy made a big fuss over her. I almost always let her pick up the tab. Why? Because I found that when I picked up the tab, it threw our relationship out of whack. She could afford to pay the tab more easily than I could. That was her contribution to our relationship. If I picked it up, it created an imbalance — she was beholden to me not only for her physical care, but for her food and drink. That tended to spoil the fun atmosphere of the outing.

I found other ways to help her maintain a semblance of independence. Banking was difficult at her branch, because every time she wanted to cash a check, she needed me to process the money through my own bank,  she needed to go to the bank herself to cash the check, or we had to use a joint account that was set up to allow me to do her grocery shopping. She was frustrated that the only way she could access her own money was by following a ridiculous course of action. By introducing her to an ATM card, not only could she access her money 24 hours a day, by sending me to the bank, it was her money and her account. I was recorded withdrawing the money and I always got a receipt. She learned that she could always know the exact amount of money in the account with every ATM transaction, so that was reassuring to her.  That kind of situation requires a great deal of trust, however. The caregiver has to protect the rights of the cancer patient and not abuse the financial responsibilities of accessing someone else’s bank account. It was a good option for us when she didn’t have the physical stamina to get herself to the bank.

Choice is something that gives every human being a sense of independence. When we can choose our options, we feel like we have some semblance of control over our lives and the directions taken. Cancer can rob people of this in subtle ways. My mother went from being an active shopper, complete with coupons and discounts, who thrived on finding deals and bargains, to being on the bench, unable to make decisions about how her money was spent and what was brought home for her. It is so important to involve cancer patients in the decision-making process and to enable them to the best of their abilities to remain a part of the household. By asking my mother what she wanted, and giving her the opportunity to provide me with a modified shopping list, she still had the chance to make decisions on how money was spent. It’s not an ideal situation. It’s a compromise. But with cancer treatment, usually the patient resumes a more normal life as time goes on and the treatment is successful, or there is a lull during remission. If you, as a caregiver, can appreciate the opportunities provided at that time, and you step back and empower your loved one, it really does make a big difference in the overall attitude of your loved one. Knowing that the dependence is temporary makes it easier to accept.

Think about it. If you believed that your entire future was in the hands of another person, and you had no choice but to follow, wouldn’t you be incredibly frustrated? When the loss of independence becomes an issue for a cancer patient, watch out! Do everything in your power to recognize that frustration and to find ways to help your loved one adapt to it. Recognize that by empowering your loved one to do other things successfully, you are helping him or her overcome a very real limitation in a realistic way.

If this is your loved one’s first round of cancer treatment, the physical changes can be especially scary. Your loved one may have been diagnosed without any symptoms. Or there may have been warning signs that something was not right. You should ask the cancer treatment team what to expect and when to expect it. What is considered normal for your loved one? My mother was on oxygen and in a wheelchair when she began treatment for her lung cancer. She had already lost a great deal of her physical independence. Cancer treatment gave that back to her. Not only was she able to go without oxygen for a considerable period of time, she was able to dance again, to explore, and to participate in events with her family and friends. That was a very important thing for her. While the cancer treatment did create physical limitations, these were temporary, and as the chemotherapy moved out of her system, she was rewarded for her patience with the chance to make more decisions and to do more physically.

If you have a loved one who is frustrated by the loss of independence, consider having a frank conversation about it. Brainstorm ideas about how to solve the issues most important to your loved one. My mother often felt left out of important decisions. Sometimes, the simplest fix was to include her in the process, even if it was something as trivial as getting a taillight fixed on her car. Taking her with me to the garage and letting her sit in the car while the mechanic installed the new bulb mattered. It meant that she could pay the mechanic directly, could see the taillight was working again, and could feel like she was able to maintain her own car. She might not be able to actually drive the car, but it was still hers, still in her name, and she still had control over how it was serviced. When you’re talking about independence, it’s often the little things that matter most. By bringing my mother along and making her part of the process, she could feel like she still played a vital part in her own life. She didn’t always have to have everyone do things for her.

This is even more important in the home. If your loved one is frail from the effects of cancer or chemotherapy, he or she may face real dangers that can be addressed. Sometimes the simple act of getting in and out of a bathtub can be a challenge for some cancer patients. Installing a handicapped rail is a simple, but effective fix. If you’re handy and you know how to locate wall studs, you may be able to do this yourself. If you’re not, ask a relative or friend with experience, or hire a handyman. Sometimes getting in and out of the house can be a huge challenge, especially if your energy level is down. A handrail is important for people who are unsteady on their feet. If you know your loved one tires easily, and the trip from the house or apartment is rather long, having a place to sit for a few minutes can make a big difference. Put an outdoor chair half way along the route from the house to the car. Sometimes I would busy myself with the garden while I waited for my mother. It let her take her time and I got to pull the weeds.

Cancer patients with neuropathy often have great difficulty dressing themselves. Do you realize how much we rely on our fingers when we are dressing? Butttons and zippers are the bane of people with neuropathy. What’s the solution? If you can, recommend clothing that easily slips over the head or hips. Elastic-wasted pants allow patients more independence in the bathroom. A A man might choose a polo shirt over an Oxford button-down choice and forgo the tie. A woman might choose a knit blouse with a flattering neckline she can pull on, instead of a blouse with lots of buttons.

My mother was absolutely crushed when she lost most of her hair during chemotherapy. And wigs just weren’t her style. It doesn’t matter how many people tell you it’s no big deal that you lost your hair. If you feel it’s a big deal and you are sensitive to it, it’s a big deal. But I found a way of dampening the dismay. My mother had a thing for colorful cotton slacks. Bright florals, plaids, and prints were her signature. When she lost her hair and needed to wear a cap, I bought fabric and made her a number of coordinating outfits. The slacks had elastic waists that made dressing easier. I designed a “chemo cap” myself, and it was easy for her to put on and wear. Sometimes I would add a fabric rose or some braiding to the cap. I even once threatened to make her a “Carmen Miranda” chemo cap, with fruit dangling on it. She could handle the loss of her hair because she felt she was still making a fashion statement for herself. People would comment on her outfits when she was at the cancer center. When you know you look good, you feel better.

I once saw a young woman out at a restaurant, dining with her husband. She was wearing a kerchief on her head and had that pallor that cancer patients sometimes have when they are going through treatment. But she had on a wonderful blouse that coordinated with her kerchief, and the color was reflected on her face. As I was leaving, I stopped at her table to tell her that was a great color on her. It wasn’t about the cancer or the kerchief. It was about the dignity she showed when she dressed herself to go out to dinner. This was a woman who was showing her own character and strength in the choices that she made. I appreciated that. She looked good and I thought she ought to know that. But then, I understood my mother’s own doubts about herself through the chemotherapy treatment. No one wants to feel like he or she is less than a person because one’s hair falls out. The truth is you can still look great during cancer treatment and you might as well make the best fashion statement you can. When you embrace that concept, you are embracing a mental independence. You are choosing to be who and what you still are, regardless of the cancer and how it affects your life. You are saying, “Here I am world — take it or leave it!”

When it comes to jewelery for patients with neuropathy, sometimes it’s easier to leave in a pair of “everyday” earrings, rather than changing them every day. Sometimes it’s easier to wear bangle bracelets and longer necklaces than choices with clasps that require fine motor skills.

Some cancer patients find that cooking becomes too difficult during treatment. Even this can be adjusted to suit your loved one. If you act as a sous chef and your loved one appreciates the need to protect himself or herself from the dangers of cooking with neuropathy, he or she can still be productive in the kitchen. I used to chop my mother’s ingredients for her, measure things, and prep the pans for her. That allowed her to continue cooking. My mother made a great chicken cacciatore. Being able to still manage to make family favorites meant that she was a productive human being. By acting as her side kick, I made sure she had everything she needed, but I also made sure she got the credit for the meal. Sometimes I would do the ingredients the night before, so that when she went into the kitchen, it was all about her. She was able to use her limited physical energy in a positive way and we all got to enjoy the end results. Are there ways you can help your loved one to still engage in favorite activities, by providing some support services that still allow him or her to accomplish something meaningful?

In the end, cancer treatment is really not that different than many everyday struggles. If you remember that you spend your whole life adjusting to your circumstances, if you appreciate the need to adapt in your normal life, you can help your loved one to recognize that this skill is just as important during cancer treatment. Aim for as much independence for your loved one as is humanly possible, even if it means changing your definition of independence. Be creative. Think outside the box. Empower your loved one so that he or she feels life is worth living. Every human being, even someone who is bedridden, has something to offer that is valuable. Dig deep and then appreciate it when you find it.

How can you build the support system you need when you are a cancer patient or caregiver of a cancer patient during treatment? Start out on the right foot, even in the middle of the process, and understand that there will be people all along the course of treatment who can help.

APPOINTMENTS
If the cancer patient is easily exhausted, uses a wheelchair or oxygen, or has other physical limitations, work with the scheduler to arrange appointments with the least amount of wait time. Very often, you can book appointments during the less hectic times of the day, when the doctors aren’t as rushed and the patients aren’t stacked up like planes waiting to land at Logan Airport.

If you or your loved one is still working through cancer treatment, try to schedule so as to avoid conflicts with the work situation. Some people come in first thing in the morning, to be treated, but this can be difficult if there are side effects. Other people try to get the last appointments of the day. That way, it’s a matter of only taking off an hour of work or so. With short radiation treatments, it’s often possible to schedule for the lunch hour, so no work is missed unless there is an emergency, leaving enough time to grab a quick bite to eat before heading back to the office.

If you know that you or your loved one will be feeling the effects of chemotherapy a day or two after the treatment, schedule the appointment to accommodate this factor. For example, have the treatment on Thursday, so that recuperation takes place on Saturday. Enjoy Sunday, before it’s time to head back to work on Monday.

TREATMENTS
There may be noticeable physical, mental, and emotional changes during the course of treatment that can interfere in the quality of life for a cancer patient. At some point in time, it may be necessary to change chemotherapy medicines because of adverse reactions or because it’s not effective enough for the cancer. When an oncologist asks if there are any problems, some people might hesitate to answer, thinking that if treatment is stopped temporarily or changed, it will allow the cancer to grow. It’s important to be honest with the oncologist about symptoms, concerns, or noticed changes in the body.

Sometimes the oncologist can adjust the medication, in order to better manage the side effects.
Sometimes the oncologist can provide information that can help provide better comfort during treatment. If you or your loved one are having problems handling certain aspects of chemotherapy, such as the neuropathy that often results, let the oncologist know it is interfering with the quality of the cancer patient’s life. Not every chemotherapy drug is the right fit for every cancer patient. It doesn’t mean there is only one option for treatment.

Without good communication, though, problems can grow. Cancer specialists aren’t mind readers, and they can’t just look at a patient and instantly know what to do. By talking with them during appointments and providing an honest assessment of the situation, a cancer patient has a much greater chance of success at managing the cancer and its complications.

If you or your loved one have surgery for cancer, and there are resulting issues, such as residual pain or scar tissue, be sure to address your concerns with the surgeon and his or her staff. Today, there are more options in providing relief.

Sometimes patients who have surgery find relief in physical therapy exercises that will help stretch tightened muscles and regain flexibility, after the surgical wounds have healed. Sometimes patients don’t understand that it really takes a long time to heal from surgery. Once the wound looks healed on the surface of the skin, the expectation is that the pain should end and life should go on. The human body has its own schedule for healing. It’s not uncommon for some surgeries to take up to a year to heal.

There are also times when cancer patients are concerned that the surgery didn’t get all of the cancerous tumors, and when pain remains an issue, it’s understandable that you or your loved one might fear the cancer has spread. Talk to the surgeon or oncologist about all treatment options, and be sure to communicate your concerns and accurately describe physical symptoms, so that the physicians can make the best decisions about providing the appropriate treatments.

Radiologists today have become adept at using radiology to manage both cancer pain and some cancer symptoms. If you notice persistent pain, discuss it with the cancer team. Sometimes it indicates that the cancer has metastasized. When this happens, it’s often possible to target that spot and eliminate most, if not all, of the pain.

Sometimes radiology treatments can produce inflamed tissue. You or your loved one may be instructed to use specific skin treatments to help the healing process. It’s important to discuss the complications of the treatment with the radiology team, so that adjustments can be made where necessary. There are topical treatments and pain medications that can help the cancer patient deal with the complications, but unless you and your loved one share this information, the cancer patient is unlikely to benefit from the options.

NUTRITION
A lot of cancer patients lose a lot of weight prior to being diagnosed with cancer, and this can continue during treatment. It’s often critical to insure that patients regain weight. Chemotherapy and radiation treatments can pack a wallop, and if a patient is physically weak, he or she might not be able to withstand the rigors of cancer treatment. That’s when you really need to speak with the cancer center nutritionist or dietitian. These people can be lifesavers. They can help you set up a diet that can pack a lot of beneficial calories iin ways you wouldn’t expect. Did you know that it’s often tiring for cancer patients to chew food? Or that sometimes cancer patients have better appetites in the middle of the day, when they haven’t used up all their energy? Did you know that it’s sometimes easier to eat little meals throughout the day and to add high calorie snacks to build up the weight? By understanding how cancer treatment can affect the dietary needs of the patient, nutritionists and dietitians can provide helpful tips that can make the body better able to endure cancer treatment. If you or your loved one have special needs, like diabetes, this can be a complication for some cancer treatments, and addressing nutritional needs is critical.

The bottom line is that cancer patients usually need to maintain or gain weight during cancer treatment, and failing to do this can affect the success of the treatment. Cancer centers and major hospitals almost always have nutritionists and dietitians available to patients and their families. They can help the family cook to make meals that will entice the cancer patient to eat. They can also provide insight into how and when to use supplemental nutritional aids, like Ensure and Boost. Some patients develop a strong dislike for these products, because they tend to be overly sweet. But if a cancer patient understands that taking a nutritional supplement drink is like taking a prescription drug, and that it can improve the chances of surviving cancer and cancer treatment, it’s a lot easier to swallow.

STRESS
It’s hard not to feel stress as a cancer patient and as a caregiver. You and your loved one are facing the great unknown. Sometimes the best stress reducer is to honestly communicate the fear to the cancer treatment team. It’s often the perception of what is happening that creates the greatest stress. Sometimes the fear builds up. Sometimes it’s the guilt. A lot of people feel responsible for getting cancer. Or they are angry that this cancer occurred. You and your loved one have to understand that cancer is a disease that happens to the best people, often for reasons we still don’t fully understand. Is there an environmental cause? Is there a genetic cause? Is there a human cause? We don’t really know what creates cancer, and that’s a big part of the stress during treatment, and often afterwards. With other illnesses and diseases, there is better understanding of how it goes. Heart disease, for example, is often easier to manage because the disease and its symptoms are charted territory. New treatments allow heart patients to survive longer. Diabetes, as another example, can be managed, measured, and the needs can be addressed through diet, pills, and insulin shots, so that the prognosis for this is better than it was ten or twenty years ago. But cancer is a tricky disease. It can show up anywhere in the body, and it can migrate to other organs. That’s part of what makes cancer so scary. Understanding it can help reduce the dread you and your loved one can feel. Over the years, some cancer patients become so adept at paying attention to their physical symptoms, they can tell when their cancer is spreading, and they immediately get treated. This allows them to manage cancer for a decade or more. It can improve the quality of life for a cancer patient when the new cancer is nipped in the bud.

But some people are afraid to find out if the cancer is spreading. They prefer to remain in the dark about their own situation. That can actually cause more problems and more pain. The better able you and your loved one are to communicate what is going on with the patient’s cancer treatment, the better able the physicians will be to manage the cancer. If you are caring for a cancer patient, it’s important for you to pay attention to symptoms you notice and to share your concerns or observations. Sometimes what appears to be a huge problem is really a minor one. And sometimes a mole hill turns out to be a mountain. Talk to the cancer treatment team. Work with them to find the best solutions for the cancer patient.

But sometimes the best stress reducer for cancer patients is to forget about it for a while. Get out in the world and have some fun. Leave the cancer at home for a few hours. You’ll have plenty of time to get back to it. In the meantime, take a walk on a nice day, or have a picnic in the park. Stroll on a beach or take a drive. Life is here and now. Don’t put off living until tomorrow. Tomorrow is promised to no one.

For some people, cancer treatment is fairly straightforward. They get surgery, radiation, chemotherapy, or a combination of treatments, and within a few months, they resume their normal lives. For others, life with cancer has its ups and downs.

When my mother started her lung cancer treatment, she couldn’t really walk on her own. She was weak and her breathing was labored. She went to her first treatment in a wheelchair, hooked up to a large tank of oxygen on a continuous feed.

I accompanied her to her treatments. On her first radiation appointment, she was so frail, she couldn’t finish changing into her hospital gown, so I helped her get dressed. The technician came to wheel her into the treatment room, where the machine would precisely target her cancer. A student technician helped her to her feet, to move her onto the table. That’s when it happened. Her pants, the first thing she had unbuttoned and unzipped as she tried to dress herself, fell to the floor. She looked down at the puddle of clothing on the floor and then looked up at Carl. Well over six feet, he towered over my mother. “Could I get a little help?”, she asked. With a courtly manner that respected my mother’s injured dignity, Carl reached to the floor, pulled up my mother’s pants and buttoned them for her. Her treatment went on as scheduled, but that moment solidified her relationship with Carl. He could do no wrong. She looked forward to seeing him when she was at the cancer center for her treatments. When he graduated and got a permanent position at the hospital, she was as thrilled as if he were her own grandson. He often would see my mother across the waiting room and give me a little sign. I would distract my mother as Carl snuck around to surprise her. She was always delighted to see him.

Over the next couple of years, my mother would periodically run into Carl, usually when she was in the cancer center for chemotherapy, but sometimes when she was having a radiation check-up.  Over time, my mother learned that his mother was a mid-wife, who practiced in the UK and in Jamaica, and she was always glad to hear when Carl’s mother was coming for a visit. Carl played a very important role in my mother’s cancer treatment. He never treated my mother with pity. He was always kind and courteous, always glad to stop and say hello. He was like family.

There were other technicians at the cancer center who played equally important roles in my mother’s cancer treatment. Denise would always greet my mother with a big, cheery hello and a big hug when she came to get her for blood tests and a weight check. It was hard not to like Denise, because her bubbly personality spilled over you like seltzer water on a hot day. She was refreshing, funny and sweet.

I always carried a big purse to the cancer center. I cannot tell you the number of times people commented on it. “That’s a suitcase, not a pocketbook!” What they didn’t know was that it was my job to make sure that everything happened for my mother that she needed to have happen. In my pocketbook, I carried the calendar that tracked all of my mother’s medical appointments with her many doctors. It was my job to coordinate everything. I always had the most current list of her prescriptions, according to their dosage, prescribing physician, and special instructions. I would hand the copy to the doctor, so the information could be added to my mother’s medical record. Sometimes there would magazines she hadn’t finished reading; other times, there were magazines she was donating, so patients would have something to read during their appointments. There might be my mother’s jewelry in one of the many compartments of my pocketbook, if she needed to take it off during treatments. I was the keeper of her secrets and her treasures. I sometimes even carried a small tank of oxygen. People were always amazed to see me pull out the little tank from the gold leather bag and hook her up to it. My pocketbook was a lot like a clown car at the circus. You never knew what was going to come out of it.

The cancer center was a lot like my purse. You don’t always see what’s inside or appreciate it for what it holds. It takes a lot of people to help someone get through cancer treatments. Looking back, I remember them all with great fondness. They were a lifeline for my mother. She lived longer and better because of their treatment. There was nothing intimidating about the cancer center or its staff. That’s important, because when you’re helping care for someone with cancer, it builds a camaraderie that’s going to help you and your loved one navigate the hurdles of cancer treatment. If you feel comfortable, you’re more likely to ask questions, and that’s when you find out that there are options or changes that you can implement, to make a difference in how the cancer treatment goes. Remember that it’s always a team effort, and there are many people working together to obtain the best outcome possible. You’re a part of that support team. When you’re caring for a cancer patient, walk softly and carry a big pocketbook.

Some people are born to greatness, others have greatness thrust upon them.

Jo was an amazing person. Tall and elegant, Jo lit up any room she entered. And she was as beautiful on the outside as she was on the inside, with a great sense of humor and bright, beautiful eyes that looked at you, not around you. She made you feel connected to her with a glance, a comment, a gesture. Compassionate and kind, she was always reaching out to other people, which is no doubt part of the reason she became a social worker. Jo was a “people person”.

In high school, Jo and Kip dated. Somehow, they drifted apart, as young lovers do. Jo married a man she met, had children, lived a nice life, and then tragedy struck. Her husband was diagnosed with terminal cancer. He lived a short few months. During that time, they had to scramble to get his affairs in order.

After he died, Jo went on living, but then she was diagnosed with cancer, too. Treatment after treatment left her weakened, but determined. Some people might have given up, but not Jo. She was a fighter. She beat the cancer back. She survived, and life went on.

Life often takes a funny turn here and there. Jo and Kip, the high school sweethearts, hooked up again. Their friends were delighted that these two wonderful people found each other again. They took up where they left off, as good companions and committed hearts. They played golf. Jo was a determined competitor on the course. They even entered the Senior Olympics for golf. Their life became a mix of family, friends, golf outings, and trips to CA and NH. They reached out to embrace the life they had with arms open wide.

Over time, Jo’s cancer came in and out of their lives, as cancer often does, as a shadow on the horizon. Jo went for treatments, some harder than others, and then she would recoup at home, Kip by her side, until she was able to resume her active life. It was a battle, but Jo was a gallant fighter and Kip was her rock. He didn’t run away or hide from the reality of cancer. He stood firmly by her through the ordeal as she struggled. In the end, death came unexpectedly for Jo, from complications.

The biggest question to ask after the loss of someone so special is this — what would life have been like if Jo hadn’t had all that cancer treatment? As gruelling as it was, and it was gruelling on her because cancer can be a cruel disease — what would life have been like without Jo? She left a big hole in the hearts of many who loved her when she died, none bigger than Kip’s, because she was such a powerful force of love and inspiration. As she struggled with the cancer through the last decade of her life, Jo still reached out to people, still pushed herself to be more and do more. She and Kip didn’t have enough time together. For that kind of love, there will never be enough time.

Ordinary people are a dime a dozen. Some people wander through life, unfocused, uninterested, and under-engaged in life. They don’t know how important life really is, so they squander the life they have. The Jo’s of this world are extraordinary. They reach out and grab the brass ring. They live life as fully as they can, and they invite us to do the same. Time may be shortened for a lot of cancer patients, but you will often find that cancer pushes people to use the time they have in amazing, inspiring ways.

Because Jo lived those extra years after her cancer diagnosis, the lives she touched were many, and the people she met along the way took the kindness and wisdom she shared and they passed it along to the people in their circles. Love can be contagious. Don’t ever think of cancer as the end. Think of it as a beginning. Take every day and make it meaningful. Let that be your legacy. Let that be your mark on the world.

You’re getting a chemotherapy treatment for your cancer. Maybe you’re feeling a little nauseated. You’re definitely tired. All you want to do is fall asleep for a little while as the powerful drugs course through your veins. And then you hear it. It’s your cell phone. Your boss is calling from work. This happens every fifteen or twenty minutes for the two hours you’re sitting there in the recliner, surrounded by other patients. Your boss wants to know where this is or that is. It’s imperative she knows.

What kind of boss calls a patient during chemotherapy? As if that’s not enough, the boss calls more than once?

Some people schedule their chemotherapy treatments toward the end of the day. That can make dealing with cancer treatment a lot easier when you’re still working. It’s not always possible to do this, but if you’re having difficulty getting time off from work, try to talk to the appointment scheduler about your best options. In an ideal world, patients would have the flexibility to get their chemotherapy and continue to do their jobs, but things happen that can muddy the waters.

A young woman had a very ugly public scene at the cancer center where my mother was treated. She had waited several hours for a medical exam and her chemotherapy, and she was very late getting back to work. When the parking lot attendants couldn’t immediately retrieve her car, she went ballistic, screaming and berating them. Her stress level was so high, she lost her self-control and her ability to think logically.

Fear of losing one’s job during cancer treatment can be very real, even when there are mandated protections for workers. It’s always important for cancer patients to have a clear understanding of what their rights are, but also to try to work with their employers to create a win-win situation. If you try to schedule medical appointments and treatments to interfere as little as possible with your job, not only will you avoid unnecessary stress, you will probably impress your boss with the fact that you are still doing the best you can under the circumstances, so when you’re feeling better, you’ll continue to be a valuable employee. Most bosses appreciate workers who try to give their all to the job, and they can usually find ways to help you stay on the job, while minimizing the obstacles you face.

But sometimes, no matter what you do, your boss is going to be a jerk. And sometimes the reasons behind this bad behavior are more complicated than you think. As I sat in that chemotherapy room, I observed the pale complexion of this young woman, her kerchief on the bald head, and her thin frame. Just looking at her, you knew she was at a very critical point in her chemotherapy. She just wanted to sleep, and every time she got back into her nap, the cell phone would ring.

Several of us observed this young woman’s exasperation with her boss. Her friend sat in the chair next to her, there for moral support and to provide transportation to someone not really capable of driving herself. The conversation started simply enough. Her friend was disgusted that the boss was calling. How could the boss be that insensitive? The rest of us commiserated. After all, we understood how tough it was to get chemotherapy, and we understood the aftereffects that were tough to handle.

But as the young woman talked about her job, something became obvious. Not only was she her boss’s right hand, she was a rock for the people around her. She was the “go-to” person on the job, the one with the sensible solutions and the ability to handle crises. She probably even made her boss look more effective than she really was, because she was very dedicated to the children with whom she worked.

Sometimes when strong, capable people get sick, especially with a serious illness like cancer, it can trigger panic in those who count on them. It won’t always be your boss who falls apart when you are ill. It could be a family member or a friend. When you fill the role of Superman or Superwoman in the lives of the people around you, and you are facing cancer treatment, people are terrified at the thought of losing you. They put themselves first and they think about what they stand to lose if you can’t be there for them. How dare you have the nerve to get sick when so many people need you! Don’t you know how important you are to them? The more demanding your boss, and the greater the sense of neediness, the more likely it is that he or she is terrified of losing you.

Of course, the reality is that cancer patients never ask for their disease. It happens to the best people. It happens to the smartest people. It happens to the strongest people. And sometimes, when it does, what people see is the pale skin, the bald head, and the weakness. They can’t see that you will resume a more normal life as your chemotherapy ends, or that your hair will grow back, or that you will put on weight when your appetite returns. Some people lack the vision to understand that how they treat you during your cancer treatment can have a profound effect on your energy level. You need and deserve support as you go through this process. It’s not an easy road you’re traveling, and having a needy boss just makes a hard situation harder.

Sometimes you need to stand up for yourself in a way that shows your boss you’re still the same human being you always were. It’s sad to think that you have to reassure someone else that you are doing the best you can at a time when you should be the one receiving the support. But let’s be realistic. When you’re going through cancer treatment, you really can’t do it all, nor should you have to do it. Some bosses have concerns that will fade if they better understand your situation. Other bosses will continue to be jerks. Still, it’s important to address these kinds of issues and have a meaningful dialogue. Otherwise, you will spend your time and energy dealing with the boss being a jerk, instead of directing your energy towards healing.

Just be sure to surround yourself with people who can physically and emotionally support you. Be good to yourself. Let yourself lean on others when you need assistance. You’ve probably helped a lot of people over the years, and by letting people help you in your time of need, you’re giving them a chance to give a little back. That creates balance. No one should ever do it all or do it alone. When we give, we learn to think of others. When we take, we learn to think of ourselves. If you are going to survive the obstacles that cancer puts in your path, you have to think about you, so you can be there for the people you love.

A lot of people hear the word “cancer” and think the worst. Yes, it’s a deadly disease that can kill, but a lot of people survive it. Some people go on for decades. And you can do a lot of living in a decade.

When I was getting my degree in education, I did one of my teaching practicums in the pediatrics department of a large city hospital. I met a number of children who were going through cancer treatments. Later on, I volunteered at another large teaching hospital, again in the pediatrics department. That’s where I met Scotty.

Scotty was a pip. Five years old and constantly on the move, unless the chemotherapy knocked him for a loop.

One day, Scotty’s oncologist told me that the little boy was in critical condition. He wasn’t expected to survive through the weekend. His vital signs were poor. He was in intensive care. I drove in, feeling that I owed it to Scotty to say good-bye, and to support his mother, who had had a very tough time of watching her little boy go through this ordeal. When I arrive at the ICU, I could see that little figure in the bed, hooked up to all those machines. Scotty was pale. He was all alone there. I took a deep breath and went in. I took the chair by his bedside and I greeted him with a cheerful hello. Scotty was feeling very tired, but he was still Scotty. Slowly, but surely, he began to rally a little. We talked about how sad everyone seemed to be around him. He told me he dreamed about an angel. The angel told him he couldn’t die, because his mommy would be too sad. Was this really an angel, or was it Scotty hearing his mother crying by his bedside while he slept? What really seems to matter most is that something inside Scotty clicked. Whether it was an angel, the sorrow of his mother as she contemplated losing her little boy, or the chemotherapy finally kicking in, something started to work for Scotty.

As I sat there with him for a few hours, we passed the time the way you do with children who have a silly streak. We laughed. We joked. We told each other stories. We had fun. At one point, I had my mirror out, most likely to check my mascara, because I was sure it had run  down my face as I laughed. “Can I put makeup on you?” Do you know how much courage it takes to let a five-year-old imp put make-up on you? But I figured there was no real harm, and after all, the oncologist said this was Scotty’s last few days on earth. What harm could there be?

Scotty loved every minute of it. He put shadow on my eyelids. He put blush on my cheeks. He put lipstick on my lips. I looked like a circus clown by the time he was done with me. But a funny thing happened along the way. Scotty’s vital signs started to perk up. His pulse rate improved. His oxygen level rose. These little signs showed there was still something left in him that could survive a tough bout. That weekend, Scotty went into remission.

It goes to show you that you can never really predict the end for someone. We can guess how things may go. We can look for specific “hard evidence” that someone is just about ready to die. But sometimes the opera goes on, and it’s really never over until the fat lady sings. What caused Scotty to rally that day in ICU? I think it was several things. I think it was the realization that his mother would be lost without him. I think it was also the fact that, when given the chance to be a child again, he took it. He embraced the opportunity to laugh and play. He put aside the idea that he was dying and he lived in the moment. He held on long enough for the chemotherapy to work its magic.

Sometimes we hear stories of survival and we think that it was just one thing that made all the difference. It can be. But I think it’s often many things that make the difference. Laugher helped Scotty breathe better. It increased his pulse rate, which helped his heart to function. And his dream about the angel told Scotty he still had a reason for living, so he was motivated to survive. These things all worked together to help him hold on, so that the powerful chemotherapy drugs had the chance to do their job.

Whenever you’re dealing with cancer, it’s important to understand the whole person. If you get treated with radiation and chemotherapy, that treats the physical body, even as it takes a toll on it. Some of the drugs used can have tremendously debilitating side effects, but they can have a positive outcome. How you view cancer treatment can also have an enormous impact. If you believe that death from cancer is inevitable, won’t you carry that with you wherever you go? Won’t you forever be waiting for the fat lady to sing? And in doing so, won’t you miss out on all the fun that life has to offer? Don’t live waiting to die. Live in the moment. Laugh now. Don’t put it off until you know for sure what the end result of the cancer will be. Sing. Hit those high notes. Belt it out with gusto. You don’t know what tomorrow will bring, but you have today. Enjoy it.