Communication and the Big “M”
No one is prepared when they first hear the words “You have melanoma.” It almost always comes as a shock, a kick in the gut. Some describe it is as having the wind knocked out of them; others, as disappearing for a moment—not seeing, not hearing—and being in a daze.
What you quickly learn is that communication is key to your treatment, as well as your emotional well-being. Effectively communicating with your medical team and your support system, family, and friends put you in the driver’s seat for your cancer journey.
Communicating With Your Medical Team
In the days leading up to your first appointment, prepare yourself:
- Research melanoma online but be aware that information from even just a few years ago can be out of date and incorrect. Treatments—and the success rates of those treatments—are changing quickly.
- Spend some time thinking about the questions you may want to ask your nurse, oncologist, dermatologist, and surgeon. To help you, AIM has created a list of suggested questions to ask your doctor. You can find and print that list here.
- Bring your questions with you, so you don’t need to remember what to ask.
- Bring a notebook to take notes. (This notebook can be used throughout your melanoma journey to record everything from treatment questions to side effects to appetite changes.)
- Ask a family member or friend to accompany you to your appointment. You may feel more comfortable if someone else is with you. Also, this person can help remind you of things you may want to ask as well as help you remember what your medical team told you.
During your appointment, use the materials you’ve brought along:
- Ask your questions. Don’t hesitate to read them from your list.
- Write down the answers to your questions. If you can’t concentrate enough to write the answers down, bring someone with you who can.
Once you and your medical team have your basic plan in place, continue using your notebook:
- Create a list of new questions prior to your follow up appointments to get the next set of answers you need.
- Note and communicate any changes you see in yourself, including changes in your emotional well-being. Often there are programs and support groups that your medical team can recommend if they know there is a struggle in a certain area.
- Record any and all side effects and communicate them with your medical team. Many new melanoma treatments have side effects that, especially if left untreated, can be dangerous.
- Continue doing research on melanoma and clinical trials, and use your notebook to record what you find. This type of research can help you feel more like you are partnering with your medical team and being a part of the decisions that affect your life.
Communicating With Your At-Home Support System
Having a support system at home is imperative. Knowing you have a person to call, or a team of people prepared to help gives you a chance to focus on what’s important—your health.
Establish people to assist in multiple areas. These might include:
- Help with meals, driving, or childcare
- Help with appointments and note-taking—those who will attend doctor appointments with you
- Emotional support—those who will lend an ear when you need to talk
The most important thing to remember when communicating with your support team is that when they ask, “How can I help?” it is OK to share with them what you need. Most people do really want to be of assistance. They just need to know how they can help and to know they aren’t intruding.
“It is also important to schedule to have someone with you as days alone tend to be emotionally draining. Spending an afternoon with friends, ones you know you can rely on for laughter and a much-needed break from your diagnosis is very important. Try to be upfront and honest about your needs. Don’t assume your loved ones know what you need. They aren’t thinking clearly either, so continue to keep open lines of communication.” Libby Kistler, Stage IIIB
For caregivers, the most important thing to learn is listening, for all the reasons noted above, as well as others. “There are often times when the patient is too ill to speak or get their needs into words.” Cheryl Adams, caregiver
AIM recognizes the need for honest, effective communication and is here to help you in any way we can. We can help you navigate those first few appointments, learn to talk to your medical team, answer questions you might have in between appointments, as well as connect you with other patients. Please reach out to our Director of Community Engagement or our Oncology Nurse if we can assist you in these areas.