Receiving a diagnosis of cancer may be one of the most difficult challenges you’ll ever face. The feelings that follow can be very powerful. While most people have known someone who’s been diagnosed with cancer, hearing these words spoken to you personally can be devastating.
Although cancer remains a serious illness, knowledge of cancer and its treatments has advanced significantly in the past few decades. Increasingly, cancer is about survivorship — dealing with the initial diagnosis, making decisions about treatment, and managing the treatment’s side effects and aftermath. It’s also about finding strength and resiliency during your initial care and a balance in life after your active treatment is complete.
Everyone responds differently to a diagnosis of cancer, and women diagnosed with breast cancer are no different. All sorts of feelings and emotions — disbelief, fear, anger, anxiety, sadness — can arise. How could this happen to me? I don’t have time for this right now. Did I do something wrong? I want to go away and hide. Will I die? Is this a punishment? What about my family?
Many women wonder whether their feelings are normal at this point. Trust that these are all common emotional responses. There is no standard set of “normal feelings” when facing a crisis such as cancer. Feelings are what they are.
As you go through your diagnosis, treatment and recovery, you’ll likely experience a variety of emotions. Some feelings may overwhelm you, causing you to burst into tears or get angry about simple things. Others may surprise you, making you laugh when you thought humor was long gone.
Some women find it helpful to reframe their thoughts and think of cancer as an unexpected journey — an act of traveling from one physical, emotional and perhaps even spiritual place to another. The diagnosis begins the journey with the destination being the completion of treatment and learning to live in a new landscape of survivorship.
Absorbing the diagnosis
When you learn that you have cancer, it’s not uncommon to react with disbelief. You can’t believe this is happening to you. You may wonder if your doctor has the diagnosis right or if your test results got mixed up with someone else’s. You might find yourself walking around in a dream-like state, unable to concentrate or make decisions. Or you may avoid dealing with the diagnosis completely and carry on as if nothing has happened.
Another common feeling is being scared. You might start to imagine all sorts of outcomes — some of which may be true and others not. For many women, their first thought is will I die from this? You may be scared of the treatment procedures ahead of you and their side effects, such as nausea and pain. You may be scared for your partner and your family. You may wonder if life will ever be the same or if you’ll ever be able to enjoy life again. You may worry that you won’t be able to handle all that lies ahead of you. These fears and concerns are reasonable. The first few days to weeks after learning that you have cancer is often a highly stressful time, and your feelings may be new and unfamiliar.
Handling decisions
In practical terms, you may be faced with multiple decisions regarding treatment, even though you may still be reeling from the diagnosis.
A typical first reaction for many women once they learn they have breast cancer is to have surgery as quickly as possible to remove the cancer. But you may have a choice in the type of surgery you receive, such as mastectomy or lumpectomy, as well as various breast reconstruction options. In some cases, the first treatment offered isn’t surgery, but rather treatment to shrink the cancer’s size, such as chemotherapy or hormone (anti-estrogen) treatment. Some women may be offered the option of participating in clinical research trials.
Having to make choices such as these can often add to your stress. How can you know what is the right thing to do when there are so many options offered? First, try to slow down and take a deep breath. When facing a decision point, focus on the present and what needs to be done in the short term. Break larger issues into steps and focus on the first step. For instance, if surgery is offered as the initial treatment, ask questions about the procedure, what you may need to do beforehand and the estimated recovery time.
Start assessing your resources. Ask who is on your health care team. The team often includes an internal medicine physician, a surgeon, medical oncologist, radiation oncologist, nurses, psychologists, social workers, chaplains and research staff. The team is there to meet your needs, so don’t be afraid to ask for the help you need.
You’ll probably find it helpful to bring at least one other person, such as a family member or trusted friend, with you to your appointments. He or she can take notes, listen to the conversation and help you think of additional questions to ask.
Going through treatment
Once decisions have been made and treatment is under way, your initial feelings of shock and disbelief may fade. Now you’re focused on getting through treatment and doing what needs to be done. Although you may have adjusted to your diagnosis at this point, it’s not uncommon to feel anxious or nervous about your upcoming procedures and their side effects, to worry about whether your treatment will get all of the cancer, and to wonder if your body will undergo any permanent changes. Again, these feelings are normal.
Having a good relationship with your oncologist and other members of your team can go a long way toward helping you deal with some of the fears and concerns that can fuel your anxiety. Your doctor can clarify test results, explain procedures and help provide you with realistic expectations by making sure that you have accurate information. It’s important that you be able to talk openly and honestly with your health care team. Let them know your fears and concerns and how they can best help you.
Family and friends also can provide support by helping to reduce the amount of stress in your life. The love and emotional support of those closest to you are invaluable. Logistically, the people around you can be of great help with everyday tasks such as getting you to and from your treatment sessions and buying groceries for the week.
To effectively manage stress and anxiety, you have to be willing to accept help and delegate tasks. Depending on others doesn’t come easy for some women, especially if you’re at the center of the family and all of its activities. But sometimes you need to let others help you.
When the worry is too much
Usually, feelings of anxiety tend to dissipate as you adjust to the changes you’re going through. If your anxiety persists for more than a few weeks or it remains intense, it can affect your quality of life and interfere with your ability to function. In such a case, your anxiety may be part of a more specific disorder (see “Adjustment Disorder”), which needs medical attention.
You don’t need to live with symptoms of persistent anxiety. The condition is treatable, and addressing it promptly can enhance your well-being and make your cancer treatment less worrisome. Signs and symptoms that may indicate your anxiety exceeds a reasonable threshold and should be evaluated by a doctor include:
Your doctor can refer you to a licensed therapist, licensed counselor or other mental health specialist. Treatment for severe anxiety may include medications, counseling from a licensed mental health professional or both.
Dealing with sadness
Feelings of sadness, grief and loss are natural among people with cancer. A diagnosis of breast cancer can disrupt or even shatter your life plans and may make you feel discouraged and pessimistic about your future. Although these feelings take time to work through, they usually become more manageable over a period of weeks to months.
Among some women, though, these feelings linger and deepen. Grief and discouragement can evolve into major depression, characterized by persistent sadness, loss of interest in life, feelings of hopelessness or worthlessness and continuous negative thinking. Uncontrolled pain, metabolic abnormalities and some medications also can contribute to depression.
It’s not always easy to know if what you’re feeling is just a natural response to having cancer or if it’s major depression. If you’re worried about what you’re feeling and how you’re reacting to your situation, discuss these concerns with your doctor or a member of your health care team. If you’re having thoughts of suicide, seek help immediately.
Similar to anxiety, depression is highly treatable. Treating depression is vital to your quality of life. If you’re in the midst of active cancer treatment, eliminating depression can help you better cope with your cancer therapy and any side effects it may have. You’ll also feel more motivated to take part in rehabilitation activities to promote healing. Getting help for depression may also be worthwhile in terms of your relationships with your co-workers, partner, children, other family members and friends.
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Adjustment disorder is the term used to describe a variety of emotional responses that may develop when a person encounters a major life stressor. Many people with cancer experience certain signs and symptoms of depression or anxiety. While perfectly normal, sometimes these signs and symptoms may reach the point where they interfere with daily living. However, they’re not severe enough to be classified as an anxiety disorder or clinical depression. This in-between stage is called an adjustment disorder.
Adjusting to the fact that you have cancer doesn’t occur as a single event. It usually consists of multiple responses and steps that occur throughout the course of the disease as you progress through diagnosis, treatment, follow-up and survivorship.
Adjustment to these events involves the ability to minimize their disruption to your life, regulate your emotional distress and remain actively involved in meaningful aspects of your life. In other words, even though you have fears, concerns and other difficult emotions, you are coping with your cancer and you still find meaning, joy and importance in your life.
If your feelings begin to cause significant impairment to your ability to function on a daily basis, whether at work, at home or in social settings, you may have an adjustment disorder. Doctors typically use these criteria in diagnosing an adjustment disorder:
The person with cancer isn’t the only one vulnerable to adjustment disorders. Sometimes, family members can experience an adjustment disorder as well, including children.
Age can play a role in the type of adjustment disorder people experience. Adults typically become depressed or anxious. Adolescents tend to act out their problems. This may include skipping school or doing some other type of uncharacteristic behavior.
Treatment usually consists of short-term counseling or psychotherapy, which involves talking about fears and concerns, dealing with thoughts and emotions, and changing behaviors. You and your doctor may consider use of medications.
An adjustment disorder is not a sign of emotional weakness. Some events in life are simply too great for people to manage without help. Professionals can speed the time it takes to adjust so that you can feel like yourself sooner.
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After treatment is over
Once the hustle and bustle of treatment is over, you might feel relieved that it’s behind you. No more surgery, no more radiation or chemotherapy treatments, no more hair loss. But it’s also not unusual to feel a bit lost and even scared.
As your medical appointments become fewer and farther between, contact with your health care team is reduced and friends and family members may expect you to rapidly return to your old self again. Meanwhile, you may be wondering how? How do you adjust to life after it’s been upended on you? What if your previous ideas of how to feel and act just don’t seem to apply anymore? And can you ignore the possibility of a recurrence or does life simply become a matter of sitting on a ticking clock, waiting for the cancer to come back? How do you find balance between living life and monitoring for recurrent symptoms?
Searching for meaning
Breast cancer not only affects your physical and emotional well-being, but also brings to mind questions about the meaning and purpose of life. What is it that makes life good and worthwhile and fulfilling? How do you live with a heightened sense of your own mortality? The part of you that reflects on these kinds of questions is often labeled as your spiritual side.
Paul Rousseau, a doctor who wrote about spirituality and illness, described spirituality like this: “Spirituality is characterized by the capacity to seek purpose and meaning, to have faith, to love and forgive, to worship, and to see beyond present circumstances, and enables a person to rise above or transcend suffering.”
Possessing spiritual strength and resilience can be a great help in times of crisis. It can lead to hope and a sense of life’s bigger picture. It can make you feel connected — to yourself, to others, to a higher order that takes you beyond your daily struggles. This kind of connection de-emphasizes fear and empowers you to be fully engaged in life’s experiences.
Many women express their spirituality and resilience through religion, engaging regularly in prayer, meditation and religious worship. Others express their spirituality in a less formal manner. They may become re-energized by natural beauty, experiencing refuge in solitude and en-joying nature. Relationships with family and friends also can provide a sense of spirituality.
Strengthening your spirituality
A person’s spirituality is always evolving. It matures with life experiences and is shaped by your upbringing, personality and life circumstances. A crisis such as cancer can affect your awareness of spiritual matters and highlight your spiritual needs. In essence, spirituality is linked with self-discovery and your sense of inner worth. Therefore, it’s valuable to remember and share experiences that have moved you deeply or that have influenced your understanding of yourself. Ask yourself:
For many women, writing in a journal or diary helps them process their thoughts and feelings. Joining a support group or visiting with a cancer survivor who has traveled down a similar path can provide great comfort and help you feel less alone in your own journey. In addition, many clinics and hospitals have chaplains or mental health professionals on staff to help people who are struggling with spiritual distress.
Each woman’s breast cancer journey is unique, and there are many people along the way to help you navigate yours, including members of your health care team. Going through a serious illness can be a positive journey of exploration and self-discovery. When you need help, don’t be afraid to ask for it.
MYTH vs. FACT
Myth: A positive attitude is all you need to beat cancer.
Fact: Although many popular books on cancer talk about fighters and optimists, there’s no scientific proof that a positive attitude gives you an advantage in cancer treatment or improves your chance of being cured.
What a positive attitude can do is improve the quality of your life during cancer treatment and beyond. You may be more likely to stay active, maintain ties to family members and friends, and continue social activities. In turn, this may enhance your sense of well-being and help you find strength. A positive attitude may also help you become a more informed and active partner with your doctor during cancer treatment.
At the same time, it’s perfectly normal to feel sadness, anger or fear after a cancer diagnosis. It’s a matter of degree. If you feel that negative emotions are taking up too much of your time, talk with a member of your health care team. Falsely putting on a happy face can increase your sense of isolation and hamper your ability to cope.
As you learn to cope with and adapt to all of the changes in your life, eventually things will become more manageable. Many people are surprised to discover reserves of strength they never thought they had. But even years later, you may have times when you struggle to conquer feelings of fear, anxiety or discouragement related to your cancer. This is normal. Everyone has distressing times.
Self-help strategies
As you make your way on your cancer journey — through its ups and downs and occasional plateaus — here are some strategies that may help you along the way. If these strategies aren’t helpful, ask for help.
Educate yourself
Knowledge is power. Learn as much as you can about your cancer and the treatment plan you and your doctor have set forth. When you know what to expect from your treatments, and why you’re receiving the treatments that you are, your fear decreases — you aren’t dealing with fear of the unknown.
It can be difficult to absorb all the information that your health care team provides you at the beginning. Keep your notes and any educational materials you receive for future reference. Consider organizing your information in a folder or on your computer so that you can easily refer back to it if you need to. Many women keep personal journals as a way to track their journey. It can be a helpful way to remember your thoughts and ideas.
Keeping a journal can also help you track any side effects — which medications bothered you the most and how long after receiving them did you feel the worst. This information can help you prepare for future treatments and better manage your schedule.
Express your feelings
Share your feelings, good and bad, with the trusted members of your team. They want to help you and can best help you if they know how you truly feel. Tell them about the bad stuff — the side effects, how tired you feel and how much you long to have your old life back. Tell them the funny things, too — how your dog looked the first time he saw you taking his spot on the couch in the middle of the day, and about the grocery store clerk who loved your new look (you were wearing a wig). You’re not alone and sharing how you feel can help to lighten the load.
If talking to others is stressful or awkward for you, consider writing your feelings in a journal. Writing gives you an outlet to express your anger, worries and fears. Writing may help you identify matters that bother you most, sort out your priorities and put things in perspective. Perhaps the best thing about writing is that you can do it anytime you feel the need to express your feelings.
Learn from others
Talking to other cancer survivors can be an invaluable experience. They’ve been on much the same journey as you, and they can tell you a lot about the twists and turns ahead by sharing their own stories. But remember, everyone’s experience is somewhat different. Take advantage of the expertise of others whenever you can. You can learn more about support groups made up of cancer survivors, and how these groups may help you, in Chapter 22.
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You may think there’s nothing funny about your situation, but humor can help you cope. In fact, some studies have shown that being able to laugh in the face of adversity may not only help you cope but also ease pain.
The first studies on the effect of humor on the body were conducted in the United States in the 1930s. But it wasn’t until 1979 that humor research got a real boost. That’s when Saturday Review editor Norman Cousins countered a diagnosis of ankylosing spondylitis, a painful and potentially crippling arthritis, with a combination of mainstream medicine and daily doses of humor.
To get his humor fix, Cousins watched Marx Brothers and Three Stooges movies and videos of Candid Camera. Although his doctors had given him little chance of recovery, within eight days his pain began to subside, and he returned to work.
Cousins’ experience spawned a wealth of humor research. Studies have indicated that laughter relaxes the skeletal muscles of your arms and legs, exercises your heart by raising your heart rate, releases pent-up feelings like frustration and anger, lessens pain, and, for some, makes breathing more comfortable. It doesn’t, however, cure disease. Laughter may help relieve your symptoms, but it won’t cure your cancer.
In one small study, women with breast cancer identified humor as an important coping skill. They said laughing helped them to relax, and it kept them from giving up and taking their situations too seriously. They reported feeling a strong need to laugh to survive low moments. The women also reported forming deeper, more-trusting relationships with health care professionals who used humor with them.
No one knows why laughter has the effects it does, but one theory is that it boosts the release of endorphins, brain chemicals that create a feeling of well-being. Whatever the reason, laughter helps. So look for something to laugh about, whether it’s watching comedies or finding something humorous in each day.
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Take care of yourself
You didn’t have any control over the fact that you got breast cancer, but you can control how you take care of yourself. As you try to get and feel healthy again, do good things for your body. This is an opportune time to make better food choices, engage in regular exercise, and add fun or relaxing activities to your daily schedule.
Many women find that relaxation therapies such as meditation, yoga, massage, music therapy and other mind-body activities add a measure of support and comfort to their daily routine (see Chapter 21 for more on these therapies). The better you feel physically, the better you’ll be able to cope mentally.
Exercise
During treatment, the last thing you may feel like doing is exercising, but it’s important for you to keep moving to the best of your ability. Exercise can help build muscle, boost your energy level and counter fatigue. It can also lessen depression and anxiety, relieve stress and help you feel better about yourself. In addition, if you don’t have much of an appetite, exercise may help stimulate it.
Your ability to exercise depends on the treatment you’re receiving, its side effects and your general health and physical condition. If you exercised regularly before your cancer diagnosis, you may find you can still take part in the same types of activities, but perhaps at a lower intensity level. If you didn’t get much exercise before your cancer, it’s important to start off slowly. It’s also a good idea to talk with your doctor or a member of your health care team about the best type of activities to begin with. For many women, walking is a good way to get exercise. You can walk almost anywhere and all you need is a pair of supportive shoes.
Diet
Cancer treatment can cause changes to your appetite and sense of taste. In addition, nausea and other side effects associated with treatment may make you not want to eat as much.
It’s important, however, to get adequate nutrition so that you can maintain your strength and energy. Eat when you’re hungry and eat what appeals to you. If you can, try to eat healthy, nonprocessed foods such as fruits and vegetables and whole grains. You may also find that eating several smaller meals throughout the day works better for you than the traditional three large meals.
For more information on what foods to eat and how to handle nausea from your treatment, see Chapter 20.
Stay connected
Unfortunately, some women isolate themselves during their treatment — they may feel embarrassed about their hair loss or not feel up to being out and about. But staying connected to the important people in your life provides much-needed support along the way.
Involvement with others — even if it means just sending an email or making a quick phone call — can help you take your mind off your troubles and restore a sense of normalcy to your life. More likely than not, if you tell your family or friends that all you really want is to laugh a little (or a lot) and talk about “normal” things for a while, they’ll be delighted to comply. It’s also OK to set boundaries. If you’re tired and you’ve had enough socializing, they’ll understand if you ask for some time alone to rest.
Work when you can
Having breast cancer doesn’t mean that you have to quit your job. If you’re able to, continue to work. For many women, work is a meaningful part of life. It provides a sense of purpose and builds self-esteem, and it keeps you from focusing on your cancer. In addition, co-workers often provide ongoing support.
Going to work also creates some normalcy in your life. With so many changes around you, having a somewhat structured routine can help you find balance between cancer treatments and “real” life.
You might even consider talking with other women who’ve gone through similar treatment to get an idea of how it may, or may not, affect your ability to work and maintain your usual schedule.
Before you meet with your supervisor, make a list of what might be helpful to you. Would it help to have shorter or more flexible work hours, if possible? Would it be possible for you to work from home on occasion? If your workstation is near the break room, could you move to a different spot for a while to avoid cooking smells that may make you nauseated?
Try to schedule your treatments for days and times that interfere with your work as little as possible and leave you time to recuperate — perhaps later in the day or right before the weekend.
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Cancer treatment often occurs in a setting of high-tech medicine and heavy-duty drugs. Medical staff is often so focused on treating the cancer that staff sometimes forgets about other needs that the person with cancer might have. Symptoms of stress, anxiety and depression, though deserving of care, may go unnoticed.
Doctors and nurses are becoming increasingly aware that just treating the cancer isn’t quite enough. More care providers are recognizing the need to treat the whole person — the mind and spirit as well as the body.
A new approach to cancer care, called integrative oncology, seeks to combine the best of today’s high-tech, cutting-edge cancer treatment with evidence-based nontraditional techniques and products that address the emotional and spiritual needs of people with cancer. Chapter 21 focuses on complementary therapies that can help you achieve a more holistic healing — therapies that can complement surgery, radiation, chemotherapy and other forms of standard care. You can also visit the Society for Integrative Oncology’s website (see Additional Resources).
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Consider cleaning out your ‘closet’
Cancer is a life-changing event. In facing it, you may feel a need to re-evaluate certain elements in your life, such as your priorities and your relationships. The new job or the promotion you worked so hard to achieve may not prove to be as important as you once thought. You may also find that there are people in your life who make you feel badly about yourself, or certain relationships that tend to drain your energy.
Cancer has a way of revealing life’s clutter — the things or people who don’t add value or richness to your life. Clearing them away or minimizing their effect on your life can offer a fresh perspective. In fact, you may be surprised by the silver linings behind an experience with cancer, if you’re willing to be open to them.
Examine yourself
As you examine your relationships with others, examine your relationship with yourself. If there is something you regret, let it go. It saps your energy to hold on to old hurts and sorrows. If you feel you must right a wrong, do so but let go of lingering guilt.
Believe in yourself. Believe you have the strength and courage to complete the task ahead of you. Now is the time to concentrate on yourself and not on others.
When you learn that you have breast cancer, your entire family is affected. The challenges you face involve not only sharing the initial, often shocking news, but also helping your family adjust to the changes ahead.
In some families, cancer has a way of drawing people together. Previous arguments, disagreements and pet peeves seem to fade away in the face of the illness. Family members often learn to treasure their moments with one another. Eventually, the funny side of things starts to show up, and laughter and humor around the house sometimes increase. In essence, life becomes more real and precious than ever before. In time, family members adjust and move on to deal with the challenges at hand.
But illness doesn’t always draw families together. In families where communication is already difficult, a crisis such as a cancer diagnosis may not improve the situation. Sometimes, it can make communication even more difficult and past conflicts even more problematic.
When cancer becomes a barrier
Even in the strongest of families, cancer can be a barrier to communication. Having to face this kind of illness can place tremendous stress on the family’s foundations. If family relationships were strained before cancer entered the picture, they may become even more strained now. Family members may find it difficult to come to grips with the cancer and they may not be able to talk about important issues.
A family’s responses to cancer are often very similar to those of the person diagnosed. In addition, feelings of helplessness and frustration at being powerless to solve the problem are a common response among family members. Adjustment can be difficult for all involved.
Changing roles within the family also can exert pressure on relationships. For example, you may need to give up some of your responsibilities around the house or as an income provider in order to deal with treatment. In turn, your spouse or partner may need to pick up added responsibilities, such as making dinner, taking care of the children or working an extra job. The success of this transition often depends on how the family has functioned in the past. If household and child care responsibilities were shared before, the transition will likely be smoother. But if this wasn’t the case, your spouse or partner may feel frustrated, inadequate or angry about having to take on additional responsibilities.
Teenagers also may need to shoulder chores and duties around the house. If these responsibilities were an expectation in the past, this will help things go smoother. If not, this sudden upheaval can increase tension in the family. Young children, meanwhile, may revert to more infantile behavior in an attempt to cope with the changes.
As in all difficult situations, communication is key. Have a clear understanding from your health care team about what side effects to expect from your treatments and how this will affect you on a day-to-day basis. Once you know what might be coming, you’ll be able to explain your treatment to your family and help them understand when you may need their help the most.
Be prepared that if there’s already tension and discord in your family, your cancer may lead to increased stress and frustration. Feelings of anger and resentment at the situation are not uncommon and sometimes they’re inappropriately directed toward the person with cancer. Some family members who are frightened by your cancer may cope with it in unhealthy ways, such as inappropriate alcohol use.
Seek help
Coping with cancer may require skills that you, your family and friends don’t use on a daily basis. It’s not only appropriate but often wise to seek help in the form of counseling.
A chaplain or licensed mental health professional can provide you and your family an outlet for discussing fears and other feelings that may not otherwise be expressed. He or she may also offer coping skills to help strengthen your relationships. Many people with cancer also turn to support groups for help in coping with their disease.
Try to find a licensed counselor or adviser who works with people with cancer. Talk to your doctor or other members of your health care team if you need help. Meet with the individual to determine if you feel comfortable with him or her and to get a sense of whether you think you’ll benefit from his or her help. If you’re not comfortable, look for another person.
A woman with children still at home often finds the prospect of telling her children about her cancer especially daunting. Besides wanting to protect them from hurt and pain, she frequently doesn’t know how to begin explaining the illness. It helps to come to grips with the diagnosis yourself before communicating it to your children, but at some point they must be told. Remember that children, particularly younger children, may not understand cancer in the same way that adults do. The response from your children may be very different from that of other family and friends. A child’s response will also vary with his or her age and ability to grasp the concept of cancer.
Some helpful tips
Following are some suggestions from experts that may help you as you talk to your children. You know your children best. Try to recall how they may have dealt with problems in the past — they’ll likely respond in much the same way now. Respect their resilience, but remember they need you now as much as ever.
Maximize their support system
Allow your children to carry on as normal of a schedule as possible, and assure them that it’s OK to do so. Encourage your children’s relationships with other trusted adults. By letting other adults help out with events and activities, your children will see that such relationships are OK and that they’re not being disloyal to you. Alert adults close to your children, such as teachers, coaches, counselors and parents of friends, of what’s going on.
The goal is to maintain as much stability as possible in your child’s life. If you and your partner are having disagreements or difficulty communicating, it may help to rely on family members to bridge the gap for your children. Don’t hesitate to seek professional help if needed.
Provide appropriate information
It’s important to be open with your children and to talk with them in a way that’s appropriate for their ages. Open communication with your children reassures them that they’re valued members of the family, that they aren’t being left out of important family matters, and that the family will pull through this together. Sometimes, just spending extra time holding and talking with your children can be valuable.
Children of different ages will have different levels of understanding. Preschoolers tend to think the world revolves around them, and they may see themselves as the cause of the illness. They may exhibit their distress through anxious behavior or angry, defiant outbursts. Find ways to reassure them that nothing they did or thought caused your cancer and that they’ll continue to be loved and cared for no matter what happens. Older children may feel torn between being with you and going out with their friends and living their lives as usual. Encourage them to keep up their friendships and to maintain as much normalcy as possible.
Do your best to create a safe and open communication setting, allowing and encouraging your children to express whatever thoughts come to mind. As they ask questions you’ll get a better idea of how much they understand and what they’re worried about. Children may overhear conversations, read emails, blogs, websites and other communication, and they may misunderstand or become frightened by what they find. Checking in with them often encourages them to share their thoughts and worries with you.
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As your treatment gets under way, you may feel overwhelmed at times by the number of questions you receive from friends on how you’re feeling, how your family is coping and what they can do to help. It can be very challenging to keep up with everyone’s communication needs. Some friends would like daily updates, others less often. It can take a lot of time and energy to meet everyone’s expectations for information.
To stay in control of what information is shared and with whom, some women choose a family member or trusted friend to manage the role of communicator. Setting up an electronic communication plan, such as a blog or website, is a fast way to reach the most people with the least amount of effort. For example, CaringBridge is a nonprofit organization that offers personalized websites at no cost to people facing a serious illness or hospitalization. A website such as this allows you to post updates as often as you like, and others can visit your page at any time to find out the latest news, send responses, and offer their comfort and support.
Be realistic about how often you want to send messages out and don’t hesitate to ask for help in maintaining your communication lines. Older friends and family members may need to receive updates through a more traditional communication method. The bottom line is efficient communication can provide you and your family more time and energy to cope with the multiple changes affecting your lives.
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Address common questions
It’s important to be honest with your children about your diagnosis, what you’re going through, and what they can expect at each stage of your disease and treatment. Although you may prefer to use words like bad cells, lump or boo-boo instead of cancer, these terms are often too vague, even for children. They may begin to think that every bump or lump is serious, leading to confusion and anxiety.
Encourage your children to ask questions and express their fears. Talking with them allows you to dispel misconceptions and ease the burden of legitimate worries. For example, some children think that cancer is contagious and that they might get it.
If you’re worried about how much to share in terms of your illness, remember that overhearing information is worse than being told it directly. Inevitably, children tend to overhear the discussions of their parents. This can lead to misunderstanding and fear. If you and your husband need to talk about issues you’re not ready to discuss with your children, you may wish to do it away from the home or while the children are gone. Otherwise, make sure your children are in the family circle of information.
Questions regarding death may be especially hard for both the parents and the children. Tell them that there are different types of cancer and that some people with cancer are more sick than others. Acknowledge that cancer can be life-threatening but that you and your doctors are doing your best to fight it. Or assure them that you plan on living as long as possible and that you want them to continue to be as busy and active as before.
Some kids don’t want to talk about the illness. If this is the case, don’t force the issue. Feel free to share medical updates, but don’t try to prolong the discussion if your child isn’t ready to hear it.
Help them adjust to medical settings
If your children want to visit you while you’re in the hospital and you’re in a condition to receive them, encourage them to do so. Before they come to the hospital, have your partner or another adult prepare them for the visit by describing what they’ll see, such as what you may look like and items that may be attached to you — intravenous tubes, a monitor, oxygen. Let the children stay as long or as little as they want.
If your child would rather not come to the hospital, don’t force him or her. Other means of communication may be more appropriate, such as a card, email or phone call. Different children, even within the same family, communicate in different ways.
Following the visit, someone should follow up with the children and answer any questions or see if they wish to discuss anything that surprised them. This person might also ask them if they want to talk about what was hard or enjoyable about the visit.
Make sure they know they’re loved
Your children will take their cues from you and other adults in their lives. They don’t carry all the anxiety and worry that tends to plague adults, so they process information based on what they see, hear and feel. Consistently affirming your love for them is critical to helping them adjust to changes in the family routine.
Communicating With Friends
Your friends want to help you. They may offer to bring meals to your home or ask if they can help with cleaning, grocery shopping and driving your children to school. Some may offer to hold fund-raising events to help with your medical costs. Often friendships deepen during times such as these.
But sometimes friendships are lost, too. Some friends may be frightened by having someone so close to them develop a life-threatening illness. They’re scared, and because they don’t know what to say or how to handle the situation and they don’t want to upset you, they may respond by distancing themselves. Reactions such as these can be difficult to accept, but they’re usually driven by fear and there may be little that you can do to change them. With time, however, the relationship may improve.
People with cancer usually discover soon enough those friends whose energy is helpful and supportive. Your mind and your body aren’t separate. The better you feel emotionally, the better you can physically cope with your illness. Surrounding yourself with positive, caring people helps boost your spirits and gives you confidence. Sometimes, you even make new friends, perhaps individuals who have been through some of the same experiences as you have.
Learning to accept relationship changes and leaning on friendships that are true is important. These steps can help minimize some of the stress that comes with cancer and with sharing the news with others.
Feel free to set your boundaries as to how much information you want to share with your friends. And don’t feel that you have to be with your friends all of the time, or accept all of their offers of support. You know when requests to help out are good, and when they become too much.
Keep in mind that the most important thing at the moment is to focus on your needs and those of your loved ones.
Jeanne’s Story
Jeanne Greenfield has heard the popular adage many times — the one about how people fear speaking in front of a crowd more than they fear dying. She’s experienced both. “Not even close!” she responds.
More than 20 years ago, Jeanne was diagnosed with advanced cervical cancer — stage IVB, about as bad as it can get. At the time of her diagnosis, she was told the survival rate for women with this type and stage of cancer was zero. Zero.
When her doctors told her she had only a short time to live, the 38-year-old single mother of three fell apart. She cried uncontrollably, beat her pillow with her fists and refused to talk with people. She was angry, she was bitter, she was scared — and she was determined. Instead of going home and getting her affairs in order, Jeanne pleaded with her doctors to try something. “I refused to believe I was going to die.”
Jeanne was placed on a clinical trial of chemotherapy medications, a combination of drugs she equates to ingesting drain cleaner. The drug regimen was eventually found to have too many severe side effects. For Jeanne, though, the chemotherapy worked very well. Next came radiation. She received 30 radiation treatments.
During her cancer treatment and the months that followed, Jeanne lived from week to week and checkup to checkup. “People would come and see me and they would say, ‘I’ll see you next week,’ and that gave me hope. OK. I’m going to live another week then. I would go and see my doctor for a checkup and my doctor would say, ‘I’ll see you in two months.’ That gave me hope. I’m going to live two more months.”
Doctors were hopeful that Jeanne’s treatment would buy her some time, maybe even enough time to see her oldest son graduate from high school. But they expected the cancer to return. A few months passed, then a few more. Still, no cancer. Soon a year had gone by, which gradually turned into two and three years and kept going. The cancer never came back. Jeanne has seen all three sons graduate from high school, she has watched her children get married, she has remarried, and she has celebrated the births of grandchildren.
So what happened? How did Jeanne survive when all odds appeared against her? The chemotherapy and long stretch of radiation treatments were undoubtedly key factors. But Jeanne, and even her doctors, feel other forces were also at play. Jeanne credits her strong faith, her unwillingness to give up and, aside from the cancer, her good physical health. Even when she was going through treatment, Jeanne would run or walk every day that she was able to. She also believes timing played a role. Jeanne began her treatment immediately upon diagnosis, at a time she believes the cancer was spreading rapidly.
Although Jeanne beat the cancer, recovery hasn’t been easy. In a booklet that she wrote called What I Learned from Having Cancer, she writes, “The cancer did not kill me, but the cure has certainly tried to!” Jeanne has experienced shingles, blood poisoning and inflammation of the lining of her lungs. The femoral arteries in her legs closed up due to radiation damage, twice requiring bypass surgery. The same happened to the tubes leading from her kidneys to her bladder (ureters). She still experiences swelling in her lower torso, and she lives with chronic diarrhea. “Life isn’t the same, but I wouldn’t go back for anything. ... I’ve learned to appreciate life and all that I have.”
Once very shy, Jeanne has become more bold and outgoing. She does mission work at her church. She acts in plays and speaks in front of groups. A speaking engagement at a cancer survivor seminar is what prompted her booklet, a lighthearted recollection of some of her experiences during treatment. Here are some excerpts:
If you wear your best outfit and get your hair done (that is, if you have any), and polish your nails and your tennis shoes and go to the tanning booth, your doctor might still give you bad news.
You might be in the hospital deathly ill with tubes coming out of every orifice of your body, but there’s a good chance your teenager will call you up and say, “I need the car, Mom, I have a date tonight.”
My mother went with me to my local doctor each week where I was given my interim drugs. When I got there the nurse always weighed me and took my blood pressure. Each week my mother asked them to weigh her and also asked them to take her blood pressure. What I learned from having cancer is that if your mother volunteers to go to the doctor’s office with you, it might be so that she can get a free check-up.
Today, Jeanne spends a lot of time visiting with women who have recently learned that they have cancer. She knows their fears, worries, frustrations and joys — she has experienced them all. Jeanne says it’s easy to be bitter and angry, but you have to let the bitterness and anger go or they’ll get the best of you. Fear, she says, is the worst pain of all. To this day, she still experiences moments of fear and anxiety, but she has learned how to deal with them and how to move on. In her booklet, Jeanne offers words of advice for women struggling to find some sort of balance during a difficult time:
Life is simple. Don’t complicate it. I think most everyone has asked themselves at one time or another, “Is this all there is to life?” My answer is a resounding, “Yes, yes!” This is all there is to life. That’s this life. Now the more important question: What am I going to do with that information? What am I going to do with the life that has been given me? And, in my case and maybe yours, the life that has been given back to me.