Support a friend or family member facing chordoma

How to show your support for a loved one facing chordoma

Chordoma can be a physically and emotionally challenging experience, and we often hear from friends and family who are wondering how they can make things easier for a loved one who's been diagnosed with this disease. And just as often, we hear from patients and caregivers about how vital it was to have support from their network during their chordoma journey.

There are lots of ways you can support a loved one who's been diagnosed with chordoma:

• Learn about chordoma: Read up about the disease, treatments, and potential side effects to get a better idea of what your loved one is going through. Understand that their experience with chordoma may differ from other cancers — for example, most newly diagnosed chordoma patients are treated with surgery and radiation rather than systemic therapy (like chemotherapy).
• Listen and encourage: Give your loved one your full attention if they want to talk about their feelings, fears, and concerns. Offer words of encouragement frequently, and remind them of their strengths and resilience. (And know that sometimes, all they want is for someone to listen!) Let them know that you care and are there for them through the ups and downs.
• Help with practical stuff: Your loved one may need help with day-to-day things like groceries, cooking, cleaning, and caring for their children and pets. Offer to lend a hand or even create a schedule with other friends to provide assistance.
• Show support in other ways: Sending encouraging messages, bringing over their favorite takeout, or delivering a care package can let your loved one know that you care and are there for them.
• Keep them company: Relax alongside your loved one or, if they feel up to it, spend time with them doing things they enjoy.
• Be understanding: If they reschedule plans or cancel at the last minute, be patient and flexible.
• Respect their privacy: Your loved one may not want to talk about chordoma with everyone. Respect their wishes and don't share their diagnosis without their permission.
• Remember and celebrate treatment and recovery milestones: Marking the completion or anniversary of treatment can be an important way to show you care.
• Understand it's a marathon, not a sprint: Chordoma treatments and recovery can last months or years. Be ready to offer support for the long haul.