Any first appointment with an oncologist can be nerve-racking (and scary, and sad, and overwhelming), even if you’re not the one who’s received a diagnosis. You want to be the strong one—and it can be tough to keep a level head while trying to process all the changes that will be happening in your loved one’s life, and in your own.
As their supporter, you want to be someone they can lean on, but “sometimes it’s just as hard for the support person as it is for the patient,” says Sarah Murphy, a licensed therapist who’s worked with breast and ovarian cancer patients for nearly 20 years.
Being prepared is one of our favorite ways to be. Here are some strategies to help you feel confident as you support your loved one during their first oncology appointments.
Clarify expectations before the appointment
Sarah Kurker, an oncology social worker and professor of social work at Arizona State University says that many supporters often want to jump in and be active during the appointment. You may want to ask questions, take notes, and give feedback. However, this might not be the way your loved one wants you to support them at this moment. Before joining them at an appointment, make time to have a conversation to clarify the role they’d like you to fill in the appointment. Do they want you to relay concerns they mentioned beforehand? Do they want you to silently take notes and hold their hand? Now you have your first step to the plan.
“Some people are afraid of [asking for what they want], so for the caregiver it’s important to ask. I think it’s helpful to establish [these roles] before and create the scene of how you want it to go,” Kurker says.
Bring a list of questions
Cathay Spagnoli, a nurse navigator at Northwestern Medicine, says she always recommends people come with a list of questions and something to take notes with (here’s Jadey’s list of recommended questions). And one of the most important ones to ask: “who should I contact if I have more questions?”
Spagnoli says you and your loved one are not expected to ask all the questions you’ll ever have, and process it all, at this first appointment. “Each part of [your] journey could bring new questions…and we tell people knowledge is power because it takes away the fear of the unknown,” Spagnoli says. “There’s just things that you talk about that kind of make it feel a little less scary.” Typically hospitals and doctors have online portals or triage numbers that you can contact with questions during and outside of business hours.
Listen and take notes
If they’d like you to play an active role, bringing a list of questions, and taking notes on the answers, can be helpful. Even if you usually have a great memory, this is an overwhelming time, so consider writing down any notes or questions beforehand, and plan to write down the doctor’s answers during the appointment. And while it’s absolutely normal for you to be in a heightened state, it’s worth it to try to stay calmer and more pragmatic while listening to the oncologist.
When Dr. Julie Limon, a family practice physician in Illinois, got the call that there was a mass on her mother’s mammogram, she cancelled the rest of her clinic, and immediately drove over to join her mom at her doctor’s appointment. Despite feeling shocked and emotional, she says she tried to focus on simply listening–and she advises anyone else in her position to do the same.
“Try to be the sturdy one in the group,” Julie says. “Be a good supportive person at the visit and try not to get overly worried. Listen to the facts, and listen to the treatment plan.”
After the appointment, take a minute to organize your thoughts
After the appointment, Murphy says it’s a good idea to try and organize your thoughts. Sit with your loved one to write down what you remember, and create a list of any more questions or follow up requests to direct to your point of contact at your doctor’s office or hospital.
Above all, be patient with your loved one and yourself
Even as a supporter, this journey will be tough. You might feel overwhelmed, and sad, and anxious, and frustrated with yourself for feeling this way. The best way to support your loved one is to also take care of yourself (our article on how to support yourself as a caregiver here).
“Oftentimes we think, I don’t need support because they’re the person who’s really important, but you’re also important and they’re going to be depending on you,” Murphy says. “We can’t give from an empty cup, so it’s really important to have some boundaries and some self care and some support.”
