Lori Luedtke is a native Texan but has lived in Florida since 1996. She is married and has one biological son and two stepchildren. Lori was diagnosed with terminal brain cancer glioblastoma (GBM) grade 4 in May 2012. After doctors gave her a prognosis of two months, she participated in Standard of Care which consisted of radiation and chemotherapy and took part in a clinical trial at Moffitt Hospital in Tampa, FL.
As I have gone through this cancer journey, I have realized that people don’t know what to say or do when a loved one has cancer. I can speak out on my firsthand experiences and offer some advice.
This is a hard blog to write, but one that I think is important. I am going to start by telling you some advice that my grandfather told me when I was in middle school. He said, “You have to think of your life as a theater. You have your front row, the people seated in the theater and the people waiting to get in. The point is, you decide where they sit.”
My grandfather was the director of the community theater at that time, and I was mad at someone that “stole” my boyfriend (or something trivial like that). As I have gone through this cancer journey I have reflected on that advice numerous times. People don’t know what to say or do. I’m not sure it is intentional because they just don’t know. I can speak out on my firsthand experiences and offer some advice.
Say something. I don’t care if it is a text, e-mail or a Hallmark card, just say something.
It has been more than five years and there are “friends seated in my theater” that I still haven’t heard from — well, I thought they were friends.
It is hard to reach out and ask someone to do something for you when you are used to being so independent. But the last thing you want to hear is, “I would rather not, I have happy hour that starts at 5:00.” That person is not in the front row anymore.
I also had a couple friends that set up a “Meal Train” where they bring meals to my family. That was wonderful.
I had a point person — a friend that would listen to me especially after I had just seen a doctor or had a test – and she would send out ONE email blast informing loved ones of my health status. This was helpful to me as it is exhausting to repeat yourself over and over.
I had a friend that sent me one card every week. It was something to look forward to.
I had a friend that set up a community “TEAM LORI” Facebook page where people could post positive and encouraging thoughts, and I could also post updates.
I had a friend that would call me on her way home from work almost every day. She would ask what I was doing, say she was stopping for a smoothie and headed my way. She knew how to get in and she knew I was in bed watching TV. She would bring me a smoothie and just crawl into bed with me and start watching whatever I was watching. She was present. She was there to listen. She was and is a devoted friend.
I had an amazing husband that always had something planned so I would have something to look forward to.
These are some Dos and Don’ts when someone you know has received a cancer diagnosis:
Say things like:
Just listen. Your friend or loved one has a lot to think about and one of the best gifts you can give is to be a sounding board. Don't focus on your own worries and sadness about your friend or loved one's diagnosis. The patient or caregiver shouldn't feel like he or she has to take care of you. Instead, offer strength, humor and practical help.
Listen with interest and make eye contact. We all know there is a difference between listening and really listening, and people can tell the difference. So, the next time you have a conversation with someone, make it a point to really listen to what they have to say. By doing this — listening with interest and making eye contact – you are letting the other person know that you value their presence and ideas.
Be a hugger. Hugs not only help build stronger bonds with the people you see every day; they can have healing power. Hugs can be a non-verbal way of saying, “You matter!”
Speak and show your appreciation. The best way to do this is to say those four simple words: “You matter to me.” However, if you are someone who finds it more difficult to verbally express how you feel, it’s important to know that there are many other ways you can still show someone your appreciation.
Be present in the moment. When you’re around someone important to you, put your phone down! One of the easiest ways to show someone that they don’t matter is by spending the entire time you are with them on your phone.
Accept that sometimes words fail us. Often, the best thing is to offer hugs, show up and say, "I love you."
Ask permission. Before visiting, giving advice and asking questions, ask if it is welcome. Be sure to make it clear that saying no is perfectly okay.
Make plans. Don’t be afraid to make plans for the future. This gives your friend something to look forward to, especially with the sometimes long and drawn-out cancer treatments.
Be flexible. Make flexible plans that are easy to change in case something comes up or your friend needs to cancel or reschedule.
Laugh together. Be humorous and fun when appropriate and when needed. A light conversation or a funny story can make a friend’s day.
Allow for sadness. Do not ignore uncomfortable topics or feelings.
Check in. Make time for a check-in phone call. Let your friend know when you will be calling. Also, let your friend know that it is okay not to answer the phone.
Be observant. Your friend will give you cues if they are tired or you have over-stayed your welcome. Visits should generally last thirty to forty-five minutes; patients with cancer are often fatigued and need rest.
Follow through. If you commit to help, it is important that you follow through on your promise.
Treat them the same. Try not to let your friend’s condition get in the way of your friendship. As much as possible, treat him or her the same way you always have.
Talk about topics other than cancer. Ask about interests, hobbies and other topics unrelated to cancer. People going through treatment sometimes need a break from thinking and talking about the disease.
Read his or her blog, web page, or group emails. Oftentimes, people living with cancer blog about their experience to share with friends and family.
Remember, a family member who is responsible for the care of the person with cancer can become isolated and stressed. If you know that person, you may want to check in to see how they are doing, too. They may also be able to share ideas about how you can best help the person with cancer.
My best advice is to SAY SOMETHING; let them know you care. E-mails, texts or cards are fine. Just SAY SOMETHING, show up, be present and listen. Respond from your heart. You can always say, “I’m not sure what to say, but I can sure listen and I want you to know I am here for you.”