By Marian Sarcich, as narrated by Kara Meyer Robinson
It can be hard for someone who didn’t have early-stage HER2-positive breast cancer to truly understand what it’s like to have it.
With HER2-positive breast cancer, you may have a lot of side effects, both physical and emotional. Your treatment may last longer than people think. The emotional burden may last for a long time.
Through my advocacy and personal experience – I have stage 1 breast cancer – I have seen how important it is to communicate with those close to you to help them understand what you are going through and what you need.
Helping others understand your treatment
You may need to explain your treatment to close friends and family.
Most people are familiar with breast surgery, radiation, and chemotherapy. But they may not know about targeted therapy. You may have to explain that your targeted treatment may last up to two years. You can take drugs for 5-10 years. Even if chemotherapy ends, it is normal for side effects to appear years later.
When you share what your treatment involves, others will better understand your experience.
Help others understand your feelings
You may experience many ups and downs during and after the treatment.
Being diagnosed with breast cancer can feel isolating. Suddenly there is this gap between you and the rest of the world. The time from diagnosis to treatment and beyond can be a whirlwind.
The only way for other people to understand what is happening and what you really need is for you to tell them. It’s okay if it doesn’t come out perfectly. Feelings can be messy. Sharing also means that you’re facing what you’re feeling, and that’s good for you.
Be kind to yourself. Meet yourself wherever you are. Share what you can, when you can, how you can.
asking for help
Remember that people often want to help. They may want to do something, but they don’t know what to do. They may feel helpless. Giving them something to do is a step in the right direction.
be specific. Tell others exactly what you need, whether it’s help with dinner, a doctor’s appointment, or a shoulder to lean on.
If you feel like calling and asking for help is too much, start with a simple text message or email.
Post updates
You control who you say, when you tell, and what you say. There is no wrong way to do this. Do what is comfortable for you.
Social media is a great way to keep in touch with friends and loved ones. Consider creating a private Facebook group where you share your breast cancer story with friends, and with your community, if you feel like it. This way, you can post something all at once instead of sending individual messages to different people. This is especially useful when you are recovering from surgery or chemotherapy.
It’s also good for a practical reason: asking for help. “Can someone help me pick up my daughter from school? Who can drive me to my appointment?”
Talk to your close friends and family
Your friends and family can be a great source of support. But they may not know what to say or know what to do. Set the tone and face them.
Tell them that they don’t have to know what they say or do. Sometimes, you just need quiet company or someone you know you can count on.
Explain that sometimes you need a little time off from breast cancer. Tell them when you want to hear about their children or their job instead of talking about their cancer. Tell your friends and family when it’s okay to laugh.
Tell them it’s okay if they don’t know what to do. You may not know either.
But if there are things you don’t like, tell them. For example, if you don’t like it when they use things like warrior metaphors and battle language, tell them it’s not for you.
Talk to your spouse or partner
Keep the lines of communication open with your partner from the start. Learn to communicate comfortably. Maybe he’s on the couch after dinner or in bed in the morning. Check access regularly when you feel most comfortable. Share your feelings. Admit to yourselves that this is hard, but you are in this together.
Talk to your child
What to share depends on your child’s age and ability to handle information about breast cancer. Meet your child wherever he is.
Tell your child that he can come to you with questions. Share the answers tailored to them. It can be helpful to share what treatments await them so they know what to expect.
If your child is older, sit him down and share. It’s okay if you’re feeling emotional. Be clear that they can ask you anything and you will try to answer honestly.
Talk to co-workers and acquaintances
If you choose to tell people at work, speak with your manager and human resources department before treatment so they understand your needs. Share your choices. Do you want to work through treatment or take time off? Do you want to announce your diagnosis to everyone or to a select few?
With co-workers and other acquaintances, choose your boundaries. Then connect those boundaries and keep them. It’s okay to say, “I’d love your support and I’ll let you know what I need” or “I need time to process this and would prefer if you don’t text, call or email right now.”
Explain survival
People may think that once you complete treatment, you just need a little time to recover physically and you’ll be fine.
But survival can have many ups and downs. Suddenly, everything may hit you all at once. You may be worried that the cancer has returned. You learn your frustrations and your triumphs.
As you navigate the new normal, share the experience with your network. It helps them understand where you are and where you are going. Share your stories and show them that this isn’t over yet. It’s a new chapter.
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