A family friend of ours was diagnosed with breast cancer. She recently shared a blog she started about the dos and don’ts of reactions she would like from family and friends. This made me think back to the time of my diagnosis. It also made me look back and see that some of the dos and don’ts have changed for me personally over the years.
So, I would like to share some of them with you.
For health care providers (HCPs), I think it might be helpful to point out both the dos and the don’ts from the perspective of someone living with medullary thyroid carcinoma (MTC). Please take these with a grain of salt, since these may be specific to my unique experiences. However, I would bet that some of them are the same for every cancer patient.
“I am so sorry this is happening to you.” I have to say this one has changed for me over the years. At first, this was one of the most comforting things people could say to me. Yes, there often were tears involved on both sides, but it left me feeling less alone. Nowadays, 6 years later, all I can do is shrug it off. Yes, I am sorry this is happening to me, but at this point, I have learned so much that I am almost grateful that it’s happened to me.
“I am thinking of you/praying for you.” If you are not religious, just saying you are thinking of someone means so much. If you are religious, offering prayers is one of the best things you can do. Obviously gauging the reactions of the person you are talking to, is very important. If you are an HCP and you feel comfortable and know your patient wouldn’t be offended by prayer, please offer it. For me personally (my faith means a lot to me), having a provider who shares that with me has a very calming effect on me.
Sharing a poem, song, Bible verse, uplifting story, a comedian, or a movie. There were many friends who shared these things with me. For me personally, music had the most helpful effect. I should point out that music has always played a big part in my life. At some points during my journey, I spent much of my time alone at home. Having recommendations from friends about movies and TV shows as well as books to keep me occupied was incredibly useful. I found it helped me to be less in my own head and imagining the worst-case scenarios.
Answer the questions your patient is asking. Even if it makes you uncomfortable, even if you don’t know the answer, please try to find the answer to your patient’s questions. There is so little we can control when receiving a cancer diagnosis. We would love to have something to hold on to. For me, that was knowledge. I wanted to know everything there was to know. This included prognosis, staging, and many more questions that might be unpleasant to discuss.
Now for those lessons I learned in my years living with MTC that, looking back, clearly fall under the heading of what not to say.
“Thyroid cancer is the easy/good cancer.” This one is definitely more specific to MTC, however, it is probably the biggest “don’t. you will find on this list. MTC isn’t easy. Cancer isn’t easy in general. MTC is not a good cancer to have. It is a chronic illness. It is unbeatable. Sure, people can live a fantastic life despite it—I am living proof of this—but it is not an easy or good cancer. There are many trials, challenges, and so many setbacks.
“I knew so and so and they had this cancer. You will be fine.” Neither of those statements is particularly helpful. Especially since you may not know the person’s exact circumstances. I want to add a few nuggets here for HCPs. For some patients, it is helpful to have hope in sharing positive outcomes. But please, be realistic with your patients. They deserve the truth about their prognosis and the road ahead of them.
“You should try this.” HCPs might be wondering why I added this. I have been bombarded with “You should try this” and “My friend was cured by doing that.” I get these types of statements mostly from nonmedical persons in my life. However, there were also treatments ordered and prescribed to me that were not necessarily the correct way of addressing MTC. Please be mindful of familiarizing yourself with a cancer, especially something as rare as MTC, before making treatment decisions or suggestions to loved ones. It can be so overwhelming.
Again, these are a few of the areas that have been feeling like “don’ts” to me personally.
Read about HCP resources for MTC
I am sure if you spoke to a room of cancer patients, they would all have another thing or more to add to this list. But for now, I ask HCPs and others to ponder these things. Think about how you interact with your loved ones and your patients.
Just because it was helpful for one person, does not mean it will be helpful for another person with the same cancer. It will take some trial and error. And if you are completely lost in what to do, just sit with the patient or loved one. Sit with them in their grief about the life they thought they would have and has now been ripped away.