Sharing is undoubtedly the most important asset of support groups: sharing common experiences, feelings, thoughts, and coping strategies. We believe that Women LISTEN helps provide a day-to-day toolkit for dealing with a cancer diagnosis. It is our belief that you are a SURVIVOR from the day of diagnosis. While health care providers are the experts on treatments, research and interventions, women living with and surviving cancer are the experts in how to live once a diagnosis is made.
Many ideas and tips are shared during support group meetings. We learn from each other ways for dealing with treatment side-effects, inspiring books to read, cooking nutritious foods that taste good during chemo, coping with fatigue, supporting our children and much, much more.
You will find a collection below of ideas and insights that have been generated through our support group discussions and Women LISTEN members--including some easy-to-download tip sheets you may find helpful. They are not meant to take the place of treatment or professional interventions.
Things I wish I'd known
- It is important to not look at the mountain
- Working can be a good distraction, but do set limits
- It can take 12-18 months to get your energy back
- Attitude is a little thing that can make a big difference
- Kids are powerful motivators
- If you want to read a book or see a movie about women with cancer have someone else check it out first
- Make sure you have enough medications before the weekend
- Keep asking for medications if nausea continues; there are many types of medications that can be tried
- If you are on Tamoxifen and require any type of surgery, notify your oncologist to evaluate your blood clot risk
- Say “I need something for sleep”, not “I can’t sleep”
- Avoid appointments on Friday
- Get Replens or Luvena for vaginal dryness. Vaginal dryness may cause vaginal itching, frequent bladder infections
- When it gets gray get going!
- After surgery, get pajamas that open in the front
The following easy-to-download PDF tipsheets (sorted by topic) are based upon discussions and tips from our support group participants and facilitators:
- Starting Treatment: Everything You Wish You Had Known...about beginning cancer treatment
- Chemotherapy: Everything You Wish You Had Known...about chemo
- Lymphedema: Everything You Wish You Had Known...about lymphedema
- Mastectomy: Everything You Wish You Had Known...about mastectomy
- Radiation: Everything You Wish You Had Known...about radiation
- Recovery: Everything You Wish You Had Known...about recovery from treatment
- Going to Seattle for Treatment: Everything You Wish You Had Known...about traveling to the Seattle Cancer Care Alliance
What do I say?
It’s often difficult to know what to say when someone you know has received a diagnosis of cancer. How you respond will probably depend on the nature of your relationship. Is the newly-diagnosed woman your best friend, co-worker, a neighbor or an acquaintance? Be mindful of the closeness of your friendship, and let the relationship guide your response. Even if you do not know the person well, you can show that you care about them and are concerned about their well-being. Offering words of encouragement and support are usually well-received, and listening is often the best way to respond. Most of all, it’s important to respond in a kind and heart-felt way. The American Cancer Society offers these comments as suggestions:
- I’m not sure what to say, but I want you to know I care.
- I’m sorry to hear that you are going through this.
- How are you doing?
- If you would like to talk about it, I’m here.
- Please let me know how I can help.
- I’ll keep you in my thoughts.
In addition to those suggestions, we at Women LISTEN offer these ideas:
- I am (visualizing/praying for/thinking about/focusing on) your health.
- I love you and I care.
- I want to come see you if you want visitors. When may I come?
- I would like to cook a meal for you. Are you accepting meals? What kinds of foods taste good to you right now?
- May I be your point person to share info with others or start a health status web page for you so that others can check-in on your status?
- I'm happy to just sit and listen; to be with you.
What shouldn't I say?
Being hopeful and encouraging can be uplifting; however, it’s important not to be judgmental or disappointed when the woman with cancer becomes sad, angry or discouraged. No one can be positive all of the time. She may have very real fears and anxieties, so refrain from minimizing or discounting her feelings. Also, it is usually not helpful to tell her that you know just how she feels. People experience a cancer diagnosis in their own way, so each experience is unique.
Humor can be a very helpful coping tool, but it’s important to let the woman with cancer take the lead. Joking and laughter are great stress relievers, but you don’t want to make a joke at the expense of the woman who has been diagnosed. Unless you are very close friends/relatives and you know she would appreciate the joke, join in the laughter rather than initiating the humor.
Cancer treatment can cause profound changes in a woman’s appearance. Take care when commenting on how she looks. Comments such as, You’re so thin (or pale) may sound hurtful or embarrassing to the woman with cancer. She needs to hear when she looks good, but it’s important to be genuine when commenting.
Sharing comments about others with cancer may or may not be helpful. Again, take the woman’s lead on whether to talk about another person going through a similar situation. Finally, please do not tell the woman with cancer about your friends or relatives who have died from the disease. Focus on living, coping, surviving and thriving!
Woman's Day has published an article with good suggestions that can be found at: Things You Should Never Say to Someone Who Has Cancer.
What can I do?
Be specific about the type of help you can give and when you can be available.
- You might say: I have Tuesday free and would like to mow your lawn. Will that work for you?
Suggest they make a to-do list for you and others.
- You might say: When you find that you need something done, write it down. I'll check the list when I come over and select something I am able to do.
- You might say: When is your meeting? I'd love to have a chance to see you again and can give you a ride.
Offer to accompany them to medical appointments.
- You might say: I can go with you to your next appointment if you'd like. I would be happy to either stay in the waiting room or come in with you and lend another set of ears.
Offer to run errands.
- You might say: I'm going to the store today. Do you need any groceries or do you have prescriptions waiting to be picked up?
Organize meal donations.
- You might say: Each Friday I'll be bringing dinners that your coworkers are making for you and your family. There should be enough food for about 4 or 5 meals a week and they can stay in your freezer until you want them. Don't worry about returning any containers, they will all be disposable.
Create a wellness basket.
- You might say: I put together some items that I thought might help to brighten each day.
Coping, Counseling and Cancer
The Holmes and Rahe Stress Scale ranks personal illness or injury as the sixth most stressful life event experienced by adults. Clearly, a cancer diagnosis is very stressful, often resulting in increased levels of anxiety, sadness and fear. Learning to cope with these challenging emotions can promote healing on many levels: mental, physical and spiritual. According to the National Cancer Institute, emotional and social support can help patients learn to cope with the stress of cancer. Studies suggest that psychological support can reduce levels of depression, anxiety, and disease/treatment-related symptoms among patients. The following approaches have been beneficial to many cancer patients during and after treatment:
- Instruction and practice in relaxation, meditation, or stress management:
- Counseling or talk therapy
- Cancer education sessions
- Social support in a group setting (i.e., Women LISTEN Friday Group)
- Medications for depression or anxiety
- Exercise and physical therapy
Living with and surviving cancer can present enormous challenges for patients and their family members. In cases of intense and long lasting stress, anxiety or depression, seeking professional psychological support is very important. This is particularly true if the overwhelming feelings interfere with one’s ability to carry out daily activities. Also, individual counseling may be helpful even if a person’s distress level is less severe. Just a few counseling sessions are likely to be helpful in decreasing distress and helping establish a new normal. Counseling can help restore hope, motivation and positive feelings by:
- Increasing ability to cope with the diagnosis
- Decreasing sense of feeling overwhelmed by feeling more in control
- Enhancing self-advocacy/communication skills for dealing with the medical team
- Managing difficult feelings, such as depression and anxiety
- Learning techniques to manage symptoms and treatment side effects
- Addressing relationship, financial and work-related issues
- Exploring and resolving cancer-related sexuality issues
- Talking about end-of-treatment questions and concerns
- Learning how to help your family understand and adjust to life changes as a result of a cancer diagnosis
A variety of mental health professionals offer counseling, so it is important to think about the type of service that would be helpful for each situation. Psychologists, clinical social workers, marriage and family therapists, clinical nurse specialists, psychiatrists, licensed professional counselors and licensed pastoral counselors are the most common professionals who offer services. Health care providers and other people who have experienced a cancer diagnosis can be good sources for seeking referrals to community providers.
During our first few support group meetings, one of our founders, Jan Porterfield, used to ask, If not now, when? What a perfect question to pose about self-care. As women, we are often the givers rather than the receivers of care; and, when a woman is diagnosed with cancer, she may have difficulty adjusting to the shift from taking care of others, to being cared for. However, receiving care is paramount to healing, and self-care is essential for long-term health and recovery.
There is no single right way to heal, to feel better, to cope with a cancer diagnosis to seek treatment and to recover. Therefore, it is important to intentionally think about which ways of healing and feeling better are the best fit. Here are some suggestions for designing a Healing and Recovery Plan:
Diagnosis and Planning
- If options are available to you, find health care providers you trust. Find a new provider if you feel you cannot trust and work with your doctor.
- Get a second-opinion if you have unanswered questions or concerns.
- Allow a friend or family member to be your advocate. It is extremely helpful to have someone go with you to appointments, especially to initial diagnostic visits when your emotions may interfere with your ability to understand all of the information being presented.
- If you decide you want to do your own research, consider asking a tech-savvy friend or relative to do the research for you. Information on the Internet may be inaccurate, very confusing and/or may not pertain to your particular situation. So, it is important to fully understand the facts about your disease before going online. If you do go online, access the reputable, research-based sites. The National Cancer Institute or the American Cancer Society are good places to start. Also, many large cancer centers have excellent sites for patients. When searching for complementary medicine, the Annie Appleseed Project has many helpful links.
- Ask questions. If possible, prepare questions in advance of your appointments. Have your advocate ask more questions and take notes for you. Some women audio-record their meetings with the doctor, so they can listen again at home. Ask more questions!
- Seek genetic counseling, when recommended and/or appropriate.
- Along with your provider(s), decide the course of treatment you will pursue.
- Accept help from others. Doing this is a gift to them and to you. People who love you feel powerless and want to do something to help.
- Ask for help even if this is not something you typically do. You need to conserve your energy for healing. Ask people to do specific things for you (cooking, housework, help with children and pets, transportation to appointments, shopping, visiting, etc.)
- Learn your limits. Let people know what you can handle at work, at home and in relationships. Only you can determine how much or how little you can manage from day to day. Allow yourself to say no when you need to.
- Nourish yourself by drinking water throughout the day, especially if you are taking medicines and chemotherapy. Figure out which nutritious foods taste good to you and eat well whenever you can. Seek nutritional counseling, if that is available to you.
- Take care of your skin and hair. Chemotherapy targets all of the fast-growing cells in your body, which is good for killing cancer, but very
hard on your hair, skin and finger/toenails. Find skin and hair care products that work for you. Moisturize your skin generously. Be careful of scented or strong-smelling products, as you may experience sensitivity to aromas during treatment. Watch closely for signs of skin infection and seek treatment immediately. Protect sensitive fingers and toes if you lose your nails.
- Keep moving. Depending on your typical level of exercise and activity, continue physical activity at a pace and intensity level that feels right. Gentle exercise, such as walking, can help decrease pain and discomfort. Many cancer centers offer Oncology Rehabilitation Programs that can be implemented during treatment, depending on your physician’s recommendation. Also, movement can help the digestive process, which is highly impacted by chemotherapy and medications for nausea and pain.
- Explore complementary therapies such as naturopathy, oncology massage, acupuncture, imagery, relaxation, yoga, meditation, qi gong, art and music therapy, to name a few. Many women find these therapies to be beneficial during and after the treatment phase. Always inform the medical providers and the therapists of the entire scope of treatment you are pursuing.
- Find support. Research suggests that women manage treatment-related symptoms more successfully when they are connected to a supportive community during treatment. Support can come in many forms such as a circle of friends/family, a faith-based group or a cancer- focused supportive group, like Women LISTEN.
Most cancers have no absolute causes, and this can lead to uncertainty, fear and confusion, especially as medical treatments come to an end. Although there are no foolproof ways to avoid a cancer recurrence, incorporating principles of healthy living can, at the very least, empower women to improve their health and energy level and create a sense of well-being. Sometimes women have the opportunity to work with a medical professional in developing a Survivorship Plan. Whether that is an option or not, designing a plan for surviving and thriving is helpful because evidence suggests that women feel better when they are taking good care of themselves. Here are some questions to consider when developing an Individual Long-term Recovery Plan:
- What are my self-care skills? Do I make self-care a priority or do I take care of myself last? What skills do I need to develop in order to implement my plan to improve my overall health?
- How am I eating? Do I drink enough water? Am I an emotional eater? Do I feel guilty about eating junk food or confused about the right and wrong foods to eat? What are the roadblocks to nourishing myself and how can I overcome them?
- Do I sleep well? What interrupts my sleep and rest? How are my before-bed behaviors contributing to sleep issues? Am I anxious and worried?
- Do I smoke cigarettes?
- Do I drink excessive alcohol?
- What are the stressors in my life? What can I change? What can I respond to differently? Am I experiencing depression or extreme anxiety?
- What is making me feel badly? What are the barriers to changing that?
- Do I move my body? Which ways of exercising are the most pleasant and doable? Where can I incorporate more movement into my life?
- What makes me happy? What gives my life meaning and purpose? Do I give-back or pay-it-forward? What is my passion; what stirs my creativity?
Answers to these questions may help you chart a course of self-care, recovery and renewal. Depending on your answers, you may want to seek counseling, take classes, work with a nutritionist, find an exercise-buddy, travel, kick bad habits or addictions, join a group or volunteer. Lifestyle change is a dynamic process, and change is rarely easy. But it is possible. The first and biggest step is to care enough about yourself to take care of yourself. If not now, when?