October 2015 Ask the Expert: Coping With Your Diagnosis
A breast cancer diagnosis of any stage has a major impact on all parts of your life – not only your physical health. Juggling your everyday life with your treatment and other medical appointments can be difficult.
In October, Living Beyond Breast Cancer expert Drucilla Brethwaite, MSW, LCSW, OSW-C, answered your questions about where to go for emotional and practical support, how to balance your everyday life with breast cancer treatment, how to communicate the news of your diagnosis to different people in your life, ways to ask for help, and methods to organize your finances.
Remember: we cannot provide diagnoses, medical consultations or specific treatment recommendations. This service is designed for educational and informational purposes only. The information is general in nature. For specific healthcare questions or concerns, consult your healthcare provider because treatment varies with individual circumstances. The content is not intended in any way to substitute for professional counseling or medical advice.
Ms. Brethwaite: Such a difficult and emotional task.
First and foremost, you know your children best. You will most likely receive a lot of advice...some helpful and some not-so-helpful. Listen, ask questions, and then put a plan together that is going to work for you and your children. Some things to consider:
Keep in mind your child's developmental age and use language that is age appropriate. Limit the time talking about the news accordingly. You may have volumes to share but your child may not have the capacity to listen to all of it. Conventional wisdom is that it is better to use the word "cancer" as opposed to "have a sickness" or other more general terms. If you have several children, consider telling the older children separately as they may have different informational needs than younger children. You can then invite the older ones to be present in subsequent discussions with their siblings. In addition to telling your children that you have cancer and what treatment may look like, also spend time telling them how it will or will not affect them.
Prepare for the tough questions you may hear...the most difficult being, "Are you going to die?" Practice your response out loud. It will be helpful for you to hear the words you may have to say to your child before you actually have to say them. Tell them "what you know" and that they are welcome to ask you any questions, any time. When parents withhold information, younger kids can sometimes fill in gaps with their imagination, often fear-based, and older children may search for the information on the Internet...which may well be incorrect. Most important, check in with them soon after your conversation and at other scheduled times during your illness.
Identify for your child the important people in their who will also know the same information: grandma, teacher, etc. If you have access to professionals, oncology social workers or oncology nurses, ask your children if they would like to meet independently. It can be a safe place for kids to ask questions, get information and know they have additional support. CancerCare has a nice fact sheet on talking with your children. You are also welcome to speak to one of our children's therapists at Life with Cancer for information relevant to your specific situation. Just call 703 206.5433; there are no fees for our services.
Ms. Brethwaite: People often mean well but don’t know what to say. Below are some responses to practice ahead of time.
Control the conversation. Smile and say, "Thank you so much for asking/making the suggestion/I'm sorry to hear that. I'm doing everything I need to do and have an incredible team that is providing state of the art care.” And without taking a breath, say ”So tell me what's new with you?” or “Please excuse me, I need to...make a call, go to the ladies room, check on..."
Manage your mobile devices and social media. Write, "Thank you for sharing, however I have an incredible team that is providing me state of the art care. I'm getting all of my advice from my healthcare team." Choose not to return distressing emails or texts, or block the individual’s number or email. If this is someone you know well, it can be a challenge, but try it for a week. It can be a way to protect yourself. Reconnect with that person when you are in a different place.
Identify a "wing man." If you are going to be in a group situation or event, ask a partner or friend to stay close by. People are less apt to say insensitive things in front of others.
If these are individuals with whom you want to maintain a relationship, tell them what they can do, such as send funny cartoons or YouTube videos, tell you about their recent trip, the movie they saw, the book they read. I have had a number of family and friends tell me how bad they actually felt after they said something they thought was insensitive. They were surprised that their anxiety got in the way of their common sense.
Lastly, find a partner, family member or good friend with whom you can process when you are the recipient of thoughtless comments. It can be easy to shrug off some insensitive words, but others can sometimes stay with you for a while.
Ms. Brethwaite: Check out other areas of this website for great online support. In addition, cancercare.org has a number of online support groups and they also offer counseling. Imerman Angels can connect you with someone in a similar situation and stupidcancer.org has online programs for young adults.
Ms. Brethwaite: Breast cancer can be a complicated, unpredictable illness that can result in anxiety and an increase in feelings of irritability in both partners. A first step is to acknowledge the distress and commit to talking about it.
Know your signs of stress. With your partner, write down what you each see in yourself when you are experiencing stress and what each of you needs to calm yourselves. Set aside time for discussion, set aside time for problem solving and be clear about what the goals are. Be honest about how life has changed for both of you and how old rules may need to be adjusted. Brainstorm ideas to help make life easier and also take some time to talk about the loss. Create a plan to increase opportunities for intimacy and reinforce your partnership as a couple.
These experiences can help you move away from the roles of patient and caregiver. Identify non-cancer activities to engage in, take a day trip, schedule walks and hold hands, go out for a cup of coffee. Tell stories about what brought you together or the first time you saw each other. Carve out some time for each of you to write down what you admire in your partner, and why you are grateful for your partner, then share your responses. Cultivate a sense of humor; watch a comedy or look at some YouTube videos. Seek out a trained and skilled oncology social worker who can provide some additional guidance on improving skills as individuals and as a couple to better manage tension.
Ms. Brethwaite: This is a hard question. Thoughts about dying can come automatically into an individual's mind, but you can learn to manage them better. It can be beneficial to train yourself to focus on the present –to what is happening at this moment in time. Explore some techniques that help to center you; perhaps taking three slow deep breaths, or creating a mantra or affirmation. Acknowledge that the thought is there, and then give your brain something else to do. Take a walk, call a friend.
Consider setting aside time for processing your thoughts and feelings about your specific situation, about dying and how your story is separate from the story of others. You might look for an experienced oncology social worker for this discussion as family, friends and loved ones may find it difficult to have this kind of conversation with you. If you have specific fears, perhaps obtaining more information from your medical team will help provide clarity and comfort.
Ms. Brethwaite: Unfortunately, disability can be complicated and dependent on a number of factors. I encourage patients to talk with their employers’ HR departments to get sense of what is possible and what will be in their best interest. The American Cancer Society has some clear and practical information and the Social Security Administration provides information on policies including compassionate allowances.
Ms. Brethwaite: Getting information and putting a plan together often helps with increasing your sense of control and decreasing anxiety. Ask yourself, “What was helpful in the past?” Address the changing needs of your life step by step. Try not to get ahead of yourself and jump to step 53. Create ways to find a new normal around the demands of treatment. Engage in those activities where you can experience a variety of emotions, which can minimize the perception that cancer is taking over your life. Find someone with whom you can discuss your anger, disappointment or grief. You might want to think about seeking out a skilled oncology social worker if loved ones find it difficult to have this kind of discussion.