Dealing With Your Loved One’s Diagnosis
What to expect from your loved one
Ways to provide emotional support
Ways to provide practical support
Creating a healthy sexual relationship
NOTE: This chapter is written specifically for the partners of women with breast cancer.
When the woman you love learns that she has cancer, it’s an intensely emotional time for both of you. It can also be a vulnerable time, bringing out both positive and negative aspects of your personality and relationship.
As the two of you come to grips with the situation and try to get your emotions in sync, your relationship will be tested. You may need to make short-term and long-term adjustments in everything from your daily routines to your sex life. There will be good days, and there will be bad days.
How you both respond to your loved one’s cancer diagnosis may be influenced by many factors, such as differences in temperament, family structure, communication styles and cultural expectations. Your past experiences in dealing with crises also may influence your response. You may feel additional pressure because you’ve been taught that you need to be strong and resilient. You may have grown up in a home where problems weren’t openly discussed. You may have had relationship problems before the diagnosis.
Although each cancer situation is unique, many partners experience the same kinds of problems and day-to-day challenges that you may be facing. You have a special role in your loved one’s life during the entire process, from her cancer diagnosis to her treatment to her recovery. This is a time when she can benefit from your support, but at the same time you can’t forget about your own needs. This chapter addresses some common concerns of partners and offers encouragement and guidance.
A diagnosis of cancer can be overwhelming. The first few weeks after a diagnosis often can be the most emotional and difficult time for everyone. Moods can change from moment to moment, and emotions and feelings can be intense and unpredictable as you and your loved one attempt to cope with news that has changed both your lives. Usually, the intensity of emotions is temporary, and over time some of the anxiety lessens. This process varies with different individuals, and the two of you may come to terms with the diagnosis at different times.
Your emotions and feelings
It’s understandable that the primary focus of everyone’s attention is caring for your loved one, but your feelings and emotions also are important and valid. Even though you aren’t the one with cancer, you may experience feelings and emotions similar to hers — helplessness, anger, anxiety, fear. In addition, you may feel unappreciated if family and friends neglect to ask how you’re doing.
Your role and position in your loved one’s life is unique because the love and level of commitment you share is different compared with that of other family members or friends. You’re the one who’s expected to be by her side no matter what. It’s normal to be unprepared for and overwhelmed by such an enormous responsibility. Don’t be afraid to acknowledge your frustrations and fears so that you can find comfort, or at least learn how to persevere through this difficult time.
Common concerns
Each couple’s experience is unique, but certain concerns and feelings may be universal. Three common concerns and challenges of partners of cancer patients are:
Fearing cancer and its spread
More than once, you may have found yourself asking or thinking: “Has the cancer spread?” “Will it continue to spread?” “What’s the chance of it coming back?” “How many hours, months or years will she live?” Fear and worry are normal responses.
In addition to the status of the cancer, you may fear seeing your loved one in pain or watching her die. You might even worry about what would happen if you became ill, especially if you feel that everyone is depending on you. You may worry about your own death and then feel guilty for thinking about yourself.
Knowing how to offer support
Many partners worry that they aren’t handling the situation correctly or aren’t providing enough emotional support, love and understanding. Common questions include “How do I help?” “Am I really being helpful?” “Am I capable of being helpful and supportive?”
One of your greatest frustrations may be learning how to deal with your loved one’s emotions, which may be unpredictable and, at times, intense. You may feel helpless and powerless because you desperately want to fix things or at least do what you can to make her feel better, but you don’t know how. Or perhaps you’ve tried to talk with your loved one about her feelings and fears, but it hasn’t gone well. You may question if your efforts are hurting the situation instead of helping it. This is a time to take stock of the strengths of your relationship. A diagnosis of cancer doesn’t magically change a relationship. But you can build on its strengths even in difficult times.
Making adjustments to daily life
“Who’s going to take care of the children?” “Who’s going to cook dinner?” “What happens when my sick days and vacation days are used up?” Beyond the emotional turmoil is the day-to-day reality of living with someone who has cancer. And for some cancer patients and their families, there may be no end to the adjustments that need to be made because the situation may keep changing throughout the different stages of cancer.
Many aspects of life are affected in one way or another when a family member receives a diagnosis of cancer. You may need to take on added child care and household responsibilities, as well as become the caregiver for your loved one. For some partners, this may be especially challenging. Like many, you may not feel prepared for your new role as a caregiver. This can cause feelings of helplessness and frustration.
Perhaps you need to spend so much time at the hospital that no time is left for anything else. You might feel guilty for wanting to be free from the situation. If additional treatments are necessary, you may feel even more restricted.
What to expect from your loved one
After your loved one has learned that she has cancer, she may need some time before she’s ready to share what she’s feeling. She may distance herself from you both physically and emotionally. It’s important to let her bring up the subject. If she confides in you, it’s probably because she wants to share her concerns and anxieties with you. Let her know that you’re available to listen to her when she’s ready. There may be times when she prefers sharing her concerns with other women who’ve had similar experiences. This doesn’t mean that your support is less important or less helpful.
Anger, fear, stress, anxiety, loneliness, depression and powerlessness are some of the emotions your loved one may experience. Her feelings may be unpredictable, changing from day to day and even hour to hour. You may be on the receiving end of emotional outbursts or mood swings. Remember, even though the outbursts may be directed at you, she’s acting out toward the situation. These are some of the emotions you may see from your loved one:
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Although doctors, nurses and other health care providers are a valuable source of information, they may assume that you understand everything they’re communicating unless you ask them to explain things. Following are some ways you and your loved one can establish good communication with her doctor and other members of her health care team.
Keep in mind that only if your loved one gives permission can her doctor or other members of her health care team talk with you or other family members about her condition. If she chooses not to grant this permission, you need to honor her desires, even though it may be difficult. She may have her reasons for limiting your communication with her health care team. Talk with her about such things.
Preparing questions before appointments
Ask your loved one if she would like you to help write down questions to ask her doctor.
Taking notes and asking questions during appointments
Ask your loved one if she would like you to accompany her to her doctor’s visits. You can help take notes and ask questions she may have forgotten to ask. This will also help you to become more knowledgeable about her situation.
It’s important that both of you understand what’s happening. Don’t be afraid to ask the doctor to explain information you don’t understand. Every question is important, and if an answer doesn’t make sense to you, ask again. Make sure that you understand the available treatment options and the advantages and disadvantages of each. If your loved one needs time to think about her treatment options, let her doctor know.
Supporting a second opinion
If your loved one wants a second opinion, help her look for another doctor. A second opinion often confirms the options that have already been presented. However, sometimes a second opinion may bring to light a different treatment approach that your loved one may want to consider. Most insurance companies cover the cost of a second opinion, but you may want to check first.
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You’re an essential part of your loved one’s healing. She needs your support throughout the entire process, from diagnosis to treatment to recovery. On some days, she may need emotional support or someone to talk to. On other days, she may need help with daily tasks, such as going to the grocery store or cooking dinner.
Your long-term commitment to your relationship is especially important because with some cancers, treatment can last for years. Initially, she may have strong support from family and friends, but over time these people may become less involved. Your support and encouragement may be the only constant in your loved one’s life.
It’s important to try to focus on living as normal a life as possible. Many challenges lie ahead, and you’ll probably say things or do things that you’ll regret, so patience is important. One of your ongoing challenges may be finding a good balance between giving your loved one added support while, at the same time, allowing her to hold onto as much independence as she can. Encourage your loved one to tell you if your support is overwhelming her.
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Throughout the course of your loved one’s illness, the amount of information presented to you can be overwhelming. Keeping track of that information and learning as much as you can about the physical and emotional effects of treatment may help you support her. Here’s a checklist to help you gather and organize information. See the checklist at the end of this chapter
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Learn as much as you can
Most people are afraid of what they don’t know or understand. Knowing the facts about your loved one’s cancer can help both of you cope with your worries and fears.
If you know ahead of time what your partner’s treatment will involve, you’ll be better prepared to cope and to plan for disruptions that may occur in your daily routine.
Gathering information may be a concrete way you and your loved one can regain control of the situation. It may also be an important part of the coping process as the two of you create feelings of confidence by making informed decisions together. You may gain valuable insights from each other. In addition, when visiting with her health care team, the two of you may feel more confident because the information you’re hearing will sound familiar to you.
Health information is available in many places, such as community, hospital and medical school libraries, and major cancer research and treatment institutions. Many organizations offer their materials online. See Additional Resources for a list of reliable and credible sources.
Offer to help your loved one search and sort through information about her cancer. Realize that she may be overwhelmed with the amount of information you find, so let her determine when or if she’s ready to read it.
But be careful not to go overboard. Some women and their partners seek out several expert opinions, try to collect all the relevant materials they can, spend countless hours on the Internet, and then try to make appropriate medical decisions themselves. This can cause considerable angst. If you find yourself in this situation, it’s important to find a cancer doctor you trust and allow him or her to help you make appropriate medical decisions.
Ways to provide emotional support
You can support your loved one in many ways, but often what’s most important is your presence. You’re in a unique position to attend to her with your heart, mind and soul. Your loved one needs your support to help her through a very emotional time.
Listen attentively. While your loved one is sharing her frustrations and fears with you, you may not be giving her your full attention. Instead, you may be thinking about what you’re going to say when it’s your turn to talk. Rather than worrying about coming up with solutions or providing the right answer, give her your complete attention. You may not feel like you’re doing much by just sitting and listening, and it may be difficult to accept what you hear, but your presence and acceptance may be exactly what she needs at the moment.
While being a sounding board for your loved one’s fears and frustrations, don’t be afraid to express your own fears and frustrations — but within limits, of course. She may not be able to take on the added emotional task of comforting you.
Ways to provide practical support
In addition to emotional support, helping out on a day-to-day basis is important. Here are some suggestions:
Communication is important in any relationship, but even more so during times of stress and uncertainty. Two things that can hinder communication are wrong assumptions and poor communication skills. Open and honest communication is important. In your discussions, it’s OK to use the word cancer.
Communication barriers
A common problem among couples is making assumptions. One person simply assumes the other knows his or her needs without actually discussing the problem or situation. Because cancer is likely a new experience for both of you, be careful to not make assumptions. You won’t truly know what the other needs unless you talk about it.
If you or your loved one aren’t the type to talk about difficult issues, the two of you may have trouble doing so now. A diagnosis of cancer may not instantly change the way the two of you communicate, but it’s an opportunity to make an improvement in your relationship. Just because you haven’t been entirely open with each other in the past doesn’t mean that you can’t start now. Big changes may not occur, but small steps are possible.
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If the cancer experience is causing problems in your relationship, it may be because you’re experiencing a breakdown in communication. A trained professional may be able to help you resolve some misunderstandings and suggest ways that you can strengthen your relationship. You might consider seeking professional counseling, especially in the following circumstances:
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Communication tips
As your loved one attempts to open up to you — to share her feelings, worries, fears and hopes — keep these points in mind:
Sexual intimacy is an important aspect of many relationships. It can be shared and expressed on many levels — physically, spiritually, psychologically and emotionally. A breast cancer diagnosis doesn’t need to put an end to sexual intimacy, but you may need to make some adjustments.
Sexual drive, sexual function and sexual acts are different aspects of sexuality. Sexual drive (libido) is the natural desire for sexual activity. The desire can be an emotional or physical need. Sexual function is how your body responds to sexual stimulation, such as erection, vaginal lubrication or orgasm. Sexual activity is the action taken to satisfy the sex drive, such as kissing, touching, sexual stimulation or intercourse.
Difficulties with sexual issues may arise during and after cancer treatment. If this is an area with which you and your loved one are struggling, talk about it. Communication is one of the best ways to improve intimacy.
Although cancer treatment often affects sexual intimacy between partners in one way or another, often patients and doctors don’t discuss this aspect of treatment. It may be helpful to discuss potential problems with the doctor ahead of time so that you’re better prepared to deal with them. Or if you’re currently having problems, your loved one’s doctor or a member of the health care team may offer some practical tips to overcome the barriers. You may also consider counseling from a trained specialist.
Barriers to sexual intimacy
To help the two of you deal with and overcome sexual barriers, it’s important that you know what they are. The type of problems your loved one may experience will depend on the type of cancer she has and the treatment she’s receiving. Sexual problems that can result include:
Lack of sexual desire
Side effects of treatments such as chemotherapy or radiation therapy may make your loved one tired, nauseated, anxious or depressed. All of these things lessen sexual desire. She may also experience less sexual desire due to stress.
Painful intercourse
Surgery, radiation therapy or other types of treatment that affect a woman’s hormones may affect the vagina’s shape and moistness. If her vagina stays tight or dry during intercourse, it becomes painful. Dryness may also result from difficulty becoming aroused.
Difficulty achieving orgasm
Your loved one may have difficulty achieving orgasm during this time. Given everything that she’s going through physically and emotionally, this is understandable. She may be anxious, distracted or fatigued from her diagnosis and treatment.
Menopausal symptoms
Menopause is a natural phase of life for women. Common symptoms include hot flashes, increased urinary tract and vaginal infections, vaginal dryness, and some loss of shape and flexibility of the vagina. When these changes are caused by surgical removal of the ovaries, the symptoms are often abrupt and can be very uncomfortable. Chemotherapy also can cause a fairly abrupt slowing of ovarian function.
Change in body image
Cancer treatments may result in the loss of hair, the loss of one or both breasts, or scarring — changes that affect your loved one’s body image. If she has had one or both breasts removed, it can be a devastating experience for her. She may feel less attractive and less feminine, and she may worry that she’ll no longer be sexually appealing to you.
Creating a healthy sexual relationship
The two of you will need to work together to overcome any barriers that may affect sexual intimacy. As with other aspects of your relationship, it may take some time and effort developing or maintaining your sexual relationship. Here are ways that may help you stay sexually healthy during and after cancer treatment:
Take a break
It may take some of the pressure and anxiety away if the two of you agree to abstain from sexual activity for a period of time. You can use this time to focus on building more emotional closeness and intimacy through hugging and snuggling.
Make a date
Set aside one night for an hour or two of intimate time and get reacquainted. This can be a time to strengthen your relationship. Even though the moment may not be spontaneous, this time together can be just as exciting.
Talk with her
You may be reluctant to initiate sexual activity because you’re afraid or worried that your loved one may experience discomfort or pain. But she may view your reluctance as a sign that you’re no longer attracted to her. The best approach simply is to ask her if she’s ready for sexual intimacy and then follow her lead.
Acknowledge the loss
If a mastectomy or lumpectomy has been performed, it may help if you looked at the scar together. It’s important that both of you are able to acknowledge the loss or alteration of a breast as soon as possible so that the grieving and healing process can begin. Acknowledge and discuss what has changed.
Many women who lose a breast miss the pleasure they felt from being stroked in that area during sex. During sexual activity, you might try stroking your partner’s whole body. She may find new places to replace the pleasure she used to feel.
Let her be the guide
Because your loved one’s body may be sore in some spots, let her guide your touch. Ask her what areas of her body she would like you to kiss or touch. Most cancer treatments won’t affect her ability to feel pleasure from touch or to reach orgasm. However, you may need to change the manner in which you give her pleasure or help her achieve orgasm.
Many couples find it helpful to take it slow once they’re ready to resume sexual activity. You might begin simply with allover body touching. If you both feel relaxed during the first touching session, the next time include some touching of the genitals.
Experiment with different positions
If sexual activity is painful for your loved one, it won’t allow her to reach orgasm. You might need to try different intercourse positions or different types of genital touching. If she has pain or stiffness in her arms and shoulders, especially if her surgery involved lymph node removal in an armpit, avoid positions that put weight on her shoulders and arms.
QUESTION & ANSWER
Q: Do I need to worry when my partner and I are sexually intimate that I’ll get her cancer?
A: One person’s cancer cannot survive in another person’s body. Thus, cancer is not contagious, and it can’t be spread by kissing, hugging or having sexual intercourse.
When a loved one is diagnosed with cancer, it’s easy to focus solely on that person’s desires and needs and to ignore your own. Over time, this approach can be emotionally draining, making you moody and tired.
Balancing work, family needs and social life may have been a challenge before your loved one was diagnosed with cancer, so you may be concerned about how you’ll keep everything in order with your added responsibilities. Perhaps you already feel overwhelmed and exhausted.
It’s important that you take care of your personal needs in addition to your loved one’s. Otherwise, you’ll build resentment toward her — a situation that will be unhealthy for both of you. To be able to help your loved one, you need your emotional, mental and physical strength.
Be realistic about what you can and can’t do. And accept that you’ll probably make some mistakes, but learn from them and move on.
Finding balance
While caring for your loved one, don’t forget to care for your own needs:
Seeking inner strength
Serious illness or tragic events often remind us of our mortality and may cause us to think about the purpose and meaning of life and to become more aware of our spiritual self. Spirituality is the pursuit of the sacred, the search for meaning and purpose in life. Spirituality involves connecting with something larger than ourselves — beyond what we can see, hear, smell and touch.
Throughout the cancer experience, you and your loved one may find strength and comfort in your spiritual beliefs, whatever they may be. Even if your spiritual paths are different, you need to respect each other’s beliefs. The strength you gain as individuals contributes to strengthening your relationship as a couple.
You may be encouraged by reading religious materials, praying or meditating. Another source of spiritual strength may be talking with spiritual advisers, who are often trained in and knowledgeable about counseling patients and families dealing with serious illness.
If your loved one has an incurable cancer and is nearing the end of her life, you’re facing many additional worries and concerns. The knowledge that death may be nearing is extremely frightening. And you may be worried about whether you can cope, whether you can make it through a long and difficult process.
It’s also a profound time for your loved one. She needs you close by, listening to her concerns and offering support with a smile or gentle touch. She may withdraw from life as she enters the dying process, but she still needs to know that you’re present and available if she needs you.
If you don’t know what to do, just simply touch her — hold her hand or rub her back — and talk. If she feels up to it, encourage her to talk about her life — a life review. These can be the times when marvelous stories are told. Sometimes, when adult children are present, they’re amazed to find out that they’ve never heard these stories.
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Some people have difficulty expressing their feelings to others, and they tend to keep everything bottled up inside. If you happen to be such a person, you may find it therapeutic to write your thoughts in a journal.
A journal is a way to release your innermost thoughts, observations and experiences. You can be as honest as you want to be about your fears and frustrations. It’s also a place where you can write about happy moments and your hopes for the future. You don’t need a special notebook or to follow any special format. However, for future reference, it may be helpful to write down dates, times, your feelings at the time and other details.
You can share your writings with others if you like, but you don’t have to do so. The main purpose of a journal is to release what you’re feeling inside.
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Hospice care
Don’t feel guilty if you can’t do it alone. No one can. This is a time when you and your loved one will likely want to consider hospice care. Hospice organizations are meant to provide expert and compassionate care for people near the end of life.
Hospice care allows your partner to spend her last weeks or months in the comfortable surroundings of your home or in a homelike setting, while under the care of a team of professional and volunteer caregivers.
Oftentimes, your loved one’s doctor coordinates the team, and a nurse handles the details of daily care. Chaplains and social workers can offer counseling and support. Trained volunteers are available to assist with daily tasks, such as light housekeeping and cooking meals, and they offer companionship. For more information on hospice care, see Chapter 23.
Grieving
When people are keeping a vigil for a loved one who is dying, or after a loved one has died, they often say it feels like a bad dream. You may feel the same way. Feelings of grief, loss and sadness come in waves. Emotions can be overwhelming, making even simple tasks seem difficult for a time.
This is all normal. It doesn’t mean you’re going to be unable to function the rest of your life. It means that right now, most of what you can do is grieve. It’s all part of being human and loving. Grief is a natural response to loving and feeling loss.
If you’re concerned that you have spent too much time grieving and are unable to function or if others have expressed concern about you, consider seeing a counselor. Sometimes a loss is more than a person can handle, and depression occurs.
The line between profound grief and depression is blurry. But if you’re still having trouble sleeping and concentrating months after your loved one’s death, make an appointment to see a counselor.
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Denial can be an important coping mechanism. Some individuals deny that they’re facing death because reality is too frightening. Denial is a form of natural protection that allows a person to let reality in bit by bit. It allows a person to continue living while he or she contemplates death.
Your loved one may be in denial for a variety of reasons: She doesn’t want to say goodbye. She may be afraid of the pain that might be ahead. She may be afraid of losing her bodily functions. She doesn’t want to lose control over her life. She may be afraid of becoming a burden to others.
One of the ways you can support her if she’s in denial is to ask her to talk about her fears. Or you might encourage your loved one to visit with a member of her health care team. Sometimes, it’s easier for a dying person to share what she is afraid of with someone other than a family member.
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QUESTION & ANSWER
Q: Is it wrong to tell a loved one that it’s OK to let go?
A: Sometimes, it appears as though a dying person is having difficulty letting go. Perhaps the experience isn’t evolving as you thought it would. Perhaps it’s taking longer than you expected. People die in their own time. Whether someone really holds on until the last family member is there, for example, medical experts have no way of proving, even if it seems that way. If you think your loved one is holding on for your sake, it’s OK to tell her that you’ll be all right and that she can let go.
You and your loved one don’t have to face cancer alone. In addition to family and friends, a network of resources is available. Begin your search by contacting organizations that offer programs to assist cancer patients and their families or that can recommend other organizations.
Support groups
Some partners of women with cancer find support groups to be helpful. Although you may be reluctant to share your feelings with strangers, being in a support group has these advantages:
As your loved one may seek the camaraderie of other women with cancer, you too may find it beneficial to connect with partners in a similar situation.
You can begin your search by contacting various cancer organizations. Many types of cancer support groups exist. They’re designed to meet the different needs of individuals with cancer and their loved ones. It may take you some time to find the group that meets your needs and interests.
Types
Not all support groups are the same. Following are several types of support groups for partners.
Peer support groups
Peer support groups make up the majority of support groups. Members of peer support groups help each other out by sharing similar experiences. Individuals leading the meetings may or may not have professional training.
Educational intervention groups
Educational intervention groups meet to learn about and discuss a specific topic related to cancer. The meetings often begin with a formal presentation, given by an expert. Some women with cancer and their partners find it empowering to learn more about cancer and its treatment.
Coping skill intervention groups
In this type of support group, participants learn concrete coping skills. During one class, participants might learn about relaxation techniques to help relieve stress. Another class might provide tips on mental health exercises to help keep a positive mental perspective. Coping skill intervention groups are usually led by mental health professionals with expertise leading these types of interventions.
Therapy groups
Therapy groups are led by mental health professionals trained in group therapy. These types of support groups usually focus on specific personal issues. Members are asked to share personal stories, as well as respond to others in the group. Each member is challenged to take action concerning a particular issue with which he or she needs help.
Online support groups
Online support groups allow members to communicate with others on the Internet in chat rooms and on message boards. If you participate in an online support group, be aware that chat rooms are not always reliable sources of health information.
Finding the right group
If you’re searching for a support group, it may be helpful to think about what type of group would best meet your needs. Ask yourself the following questions:
Who’s in the group?
Most support groups have two types of membership: open and closed. Open membership doesn’t require the same level of commitment as closed membership. With open membership, you’re generally not required to sign up ahead of time nor are you expected to attend all meetings. Closed membership usually requires preregistration.
Who’s leading the group?
Meetings may be led by health professionals or group members, such as a partner of a person with cancer. Health professionals often are licensed and have some skill in leading groups. Although a partner may be able to empathize and share personal experiences, the discussion may not be as productive unless the facilitator has some leadership skills.
What’s the format?
Some groups have a more structured program with different topics of discussion each week. Other groups have open discussions around topics members bring up.
Partners do have vital roles in the lives of women with cancer. While your experiences can be very stressful and difficult at times, they also can be rewarding. A cancer diagnosis can lead to positive growth in your relationship, as the two of you find strength in each other and as you re-explore your love for each other.
Adapted from Laurel L. Northouse and Holly Peters-Golden, Cancer and the Family: Strategies to Assist Spouses. Seminars in Oncology Nursing, 1993;9(2):74.