Andy Sealy was diagnosed with metastatic breast cancer on January 24, 2017. She, along with another local woman also diagnosed with stage 4 metastatic breast cancer, recently launched "Making the Breast of It” podcast to help others who may be going through a similar journey.
Here, Andy discusses some positive and negative experiences she’s had throughout her journey, and offers advice for those who may know someone diagnosed with metastatic cancer.
Let's talk a little about what to say (and what not to say) to someone with a life-changing cancer diagnosis. In my case, it is Stage IV Metastatic Breast Cancer.
I will say that this topic is super subjective. What bothers me may not bother others, and vice versa. I generally try to find a positive in everything, and it takes a lot to offend me or get under my skin. That being said, please note that these are just general suggestions, given to you straight from my unique perspective.
The recommendations below are what I have learned since receiving my diagnosis:
DO NOT say you are sorry. I am a lucky woman who has lived a very full life. The one thing that this disease has given me is a sense of purpose. This very blog is a product of that newfound purpose.
DO NOT say you are glad it is me and not you that has cancer (yes, this really happened!). Although I laughed and agreed when this was said to me, it could possibly hurt someone else's feelings. I am sincerely happy that it is me and not someone with a spouse and/or children.
DO NOT ask how much time they have left to live. I do my best not to internalize the median life span of my disease (3 years) because I believe that, ultimately, the man upstairs is the only one who knows what is in the cards for me.
DO NOT tell them how strong they are. Think about it, what choice did we have in this? Zero. So how does having cancer make me strong? I am just trying to survive, one day at a time.
DO NOT say "let me know if you need anything." I feel like it can be such an empty statement. Many of us are too proud to reach out and ask for help. Instead, take the initiative to be present, if possible. For example, you can ask if they would like any company during chemo treatments or scan appointments, or go and spend time with them at their house.
DO NOT ask too many specific questions related to the disease, especially if you are in a public place. I don’t mind when people ask me questions. I want to educate others on my disease through everything that I’m experiencing, but I’m not always up for talking specifics all the time. When I go out, I’m often trying to forget all of my "stuff."
DO NOT walk on eggshells around them because you are unsure of what to say. There is no handbook (that I am aware of) to help you figure out what to say to someone in this situation. Do your best to keep it light and speak from the heart.
DO invite them out. I know that I may say “no” and stay home 80 to 90% of the time, but there is a chance that I will say “yes.”
DO NOT take it personally if they cancel on you. There are some days when we just cannot do it. We must listen to our bodies and realize when we need to take a step back and relax.
DO NOT only talk about cancer and all that sad stuff. We did not choose to be in this situation and cannot let it define us. I am trying to use cancer to make me an altogether better human, and it feels great!
DO NOT only talk about yourself. While I don’t want to be the center of attention, I also don’t wish to sit and feel like I am being held hostage in my own home (or cornered at an event).
DO NOT tell them about your brother's sister's husband's cousin who BEAT their disease. Just don't. Don't you think we researched "cures" and "alternative treatments"? Speaking solely for myself - I want to live!
DO NOT tell them to fight. What else do you think we are doing?
DO NOT tell them they are a hero. I will speak solely for myself on this one: What makes me a hero? Being sick? That is not a good enough reason, in my opinion. Yes, a hero is someone who demonstrates strength in the face of adversity. But the truth is that I am just treading water, trying to survive. How does having terminal breast cancer (or any diagnosis) and getting treatment make me a hero? I don't think I will ever understand that one, although it is an honor when someone says it.
DO YOUR BEST not to blatantly stare at visible wounds, scars, reconstructed boobs, etc. I know I feel horrible when people stare at me. Honestly, if you are that curious and cannot stop staring at my chest, I will show you. I mean, they are my own design (several surgeries, and I am finally happy... Thank you, Dr. Kanchwala). Plus, I have beautiful 3D areola tattoos (thank you, Mandy Sauler). Oh, and they glow in the dark. Have you ever heard of that before? I embrace my uniqueness in this area.
DO NOT assume they are feeling well based on their overall appearance. The two do not go hand-in-hand. There are times when I look totally fine but feel like a sack of dog poo, and when I feel amazing but look like trash.
DO NOT EVER compare a mastectomy to a breast augmentation. This happened to me in my consult for my mastectomy. I was alone at the appointment, and the nurse was going over pre- and post-op instructions. In describing my anticipated pain, she compared my mastectomy to my previous breast augmentation.
A mastectomy is different from a breast augmentation experience both emotionally and physically. My friend Jessica (who is a nurse) and I came up with a list of items that she and some others had purchased for me prior to my mastectomy. I ended up giving it to Dr. Sataloff, my breast surgeon, to use with post-op instructions for other cancer patients. I explained what happened with the nurse, simply because I did not want anyone else to have to deal with the feelings that came along with such a statement. Dr. Sataloff was grateful for the list; they didn't have anything like it (for their patients), so it became a learning experience for everyone.
*In hindsight, I do not believe the nurse was trying to be cold. I truly think she was just not a warm person and was trying to ease my potential fears by comparing my procedure to one I had in the past.*
DO YOUR BEST not to cry. I know it is good to let it out but, honestly, when someone is crying because of me, it makes me super uncomfortable. I feel like I have to comfort them in their time of need. I never want to make anyone feel sad or upset; seeing my loved ones cry because of something that I am causing, by no fault of my own, just kills me inside.
DO bring over food. Even with a limited appetite, I love having options. When you get any type of serious diagnosis, there are usually people around, and food always helps. Appetites can vary during treatment or after surgery, so it is nice when different foods are coming to the house. There is a possibility that they haven’t eaten for a while or nothing is appealing. Wouldn't it be nice if you helped them to start eating again?
DO spend quality time with them when you are available and your schedules link up. I know that my main goal is to continue to collect good people and make memories. When you receive a diagnosis such as mine, you tend to put more weight on things that matter, like quality time. My door is always open, figuratively speaking. I have a regular cast of characters that frequent what I call the “chemo couch”
DO ask if they need a ride. This is always a thoughtful gesture, although it’s not for everyone. I know that I enjoy my own company and like to go to most of my appointments alone, but everyone is different.
DO offer to help with any animals they may have. On days when you’re not feeling well, having to feed, walk and take care of a pet can be a challenge.
DO offer to hook them up with someone if they are single. I know that I would appreciate that. I am not dead, and I don't plan on dying any time soon.
DO check in regularly. The worst thing to do is stay silent. I know that for me, when someone doesn't reach out, I think they are not interested in being a part of my life. This rodeo isn’t for everyone, but if you do want to be there for the person, make sure they know it.
DO ask me to connect with people who are in a similar situation. It’s really helpful to talk to people who are in the same stage of cancer and had or are having similar experiences. However, the stage part is really important.
I hope the information above helps just one person. Feel free to share it with a friend if you think it can make a difference!