With my news this past week about my cancer spreading to my brain, I’ve been taken back to the initial days of my diagnosis. There are plenty of parallels, so I thought I’d share these tips. I continue to remind myself that people mean well, even when they say really stupid things, which is inevitable. Knowing what to say to someone who has just been diagnosed with cancer is not easy, even if you have cancer yourself! The trickiest part is navigating the person and their caregiver. Some people are really open, others are very private. In my case, I’m very open, but my husband is very private (just trying to keep you all on your toes!).
Here are some general universal tips. Some of these themes parallel my Top Ten Tips for Dealing with a Cancer Diagnosis.
- Don’t tell someone about all the people you know who died of cancer. Please. To the guy at the post office in 2014 who overheard me on the phone with my therapist and decided to strike up a conversation with me after my call: I DON’T WANT TO HEAR ABOUT YOUR MOM, DAD, GRANDMA, GRANDPA, OTHER GRANDMA, UNCLE, COUSIN, FRIEND AND DOG WHO DIED OF CANCER. Nope. Not interested at all. If it’s not providing comfort, zip it.
- Do tell them about the survivors you know. In my case, especially stage 4. I get nervous when someone says, “You know, my dad had Stage 4 cancer…” Really? And he died? “That was 23 years ago, and he’s still alive and kicking.” I LOVE YOUR DAD, PETER. I can’t get enough of this. My friend Lauren texted me about a woman named Esther who lived 20 years with uveal melanoma brain mets (like me) and died last year of totally unrelated health complications. I’m being serious when I say I want to tattoo Esther on my right wrist.
- Don’t tell them what to do. A cancer patient has a lot on his or her plate. They don’t need you to add to it. If you have a recommendation, suggest it. “My sister read a book called Radical Remission and said that it really gave her hope in her fight. I’m going to send it to you. Please know that I won’t be collecting a book report and understand if you never read it.” versus “YOU HAVE TO READ THIS BOOK!”
- Think of unique gift ideas (one day I’ll do a post on this): Organize a meal train. Send money to put toward self-care like reiki, energy healing, massage and acupuncture. Take her to get a pedi. We received a lot of plants in 2014 when I was initially diagnosed and honestly, the idea of keeping them (along with myself) alive, overwhelmed me. However, we currently have seven alive plants at home (winning)! Offer to take him or her to a movie or give a gift card to the theater (I went to SO MANY movies when I was first diagnosed – it was the only way for me to truly escape the fears I was facing). This week, I made a playlist of inspirational songs for my procedure. One of my friends was so insightful to send me an iTunes gift card. Thanks, Bridget!
- Consider starting a GoFundMe page (or other fundraising site). The etiquette is that it should be started by a close friend/non-immediate family member. Make sure to get permission first, at least from an immediate family member. Even if it’s not likely that the person will incur medical expenses, the extra money can go toward travel to appointments or flying in loved ones.
- Send encouraging texts/voicemails/cards, but don’t ask open ended questions and don’t get your feelings hurt if you don’t get a reply. People don’t know what to do or say when someone is diagnosed, except for the asshat at the post office apparently. But we still want to know you’re thinking of us. Even a text that reads, “Thinking of you, here if you need me. No need to reply.” Don’t say, “Heard the news. How are you doing?” How do you think I’m doing? Emojis and GIFs are great. Even better, snail mail. I got so many cards in the beginning. I loved hearing from family members to my stepmom’s sisters to my cancer survivor friends. Snail mail is underrated. Never forget that.
- Just don’t ask questions in general. “Do you have to get radiation? It sucks.” “Are you going to lose your hair?” These are examples of actual questions people asked me after my diagnosis. There’s the diagnosis, then there’s the plan. When we’re in between the two, it’s the scariest part of the process. My radiation therapy on my left eyeball left me 100% blind in that eye. In the beginning, we didn’t know if it was temporary or permanent. Every. Single. Day. People would ask, “Can you see yet?” I finally snapped. I WILL LET YOU KNOW IF I CAN SEE! I will also let you know when I get my scan results and when I know of my treatment plans. Trust that the cancer patient is not intentionally withholding information from you. And if they are, that’s okay. It’s not about you. See #8.
- Don’t make it about you. A dear friend of mine really struggled with my initial diagnosis and would make comments like, “I need you to let me go to New York with you.” I had to call her and tell her, “I can’t have you telling me what you need right now.” I love her dearly, and I know she was hurting because she loves me so much. We’ve since talked about this over tears and wine. It was a difficult time for everyone. Make the patient aware that you are there when they need you, but keep your emotions in check.
- Keep up with CaringBridge (or whatever means the patient is using to keep everyone informed). It seems that sometimes the closest people to me think this does not apply to them. They might see me weekly or daily and think, “I’ll just get the scoop when I see her.” Please, keep up. My siblings and I put a lot of effort into my CaringBridge posts so we don’t have to repeat ourselves. It’s exhausting reliving the detail of a painful procedure.
- Be direct in how you want to help. So many people say to me, “Let me know what you need” or “I’m here if you need anything.” I don’t always know what I need. My friend Shayne text me and Nick last week, “Hi guys! I’d love to bring over some dinner and groceries for you tomorrow. Would that be okay?” Umm. Yes! What a brilliant idea. By all means! I complimented her on her direct outreach. She learned it from Sheryl Sandberg, COO of Facebook, who wrote about this after losing her husband.
Unfortunately, anymore, we all know someone with cancer. I hope you find these tips informative. What else have you found is helpful [or not] in dealing with your diagnosis?