I’m currently working on a fun blog post, but I wrote this one about a month after my cancer diagnosis (which is why it’s so negative) and thought this blog would be a good outlet for sharing it. Let me preface this by saying, there is no “right” thing to say when someone you care about is diagnosed with cancer. Everyone with cancer knows that. I know that. However, there are some things that you just shouldn’t say, even if you mean well (and everyone always means well).
Personally, I found the best thing for people to say was something along the lines of “Wow, that’s sh*tty news. If you need anything, I’m here.” Any sort of variation of that was always nice to hear and didn’t make me feel uncomfortable or awkward.
On the flip side, here are some things that I heard multiple times that were always uncomfortable and hard to hear:
A positive attitude beats cancer.
No, science and medicine beats cancer. Don’t tell someone who was just diagnosed with terminal brain cancer to “be positive”. We are going through a grieving process. Instead of grieving someone we care about, we are grieving ourselves. It is a strange experience, and coming to terms with a diagnosis like brain cancer is incredibly difficult. When someone who doesn’t understand what brain cancer is tells you to “be positive and you will beat it!” it is incredibly frustrating.
You need to fight this with all you’ve got.
Of course I will give it everything I have, but I can’t simply will this away. Me taking chemotherapy drugs is fighting this. Me going to MGH every single morning for 6 weeks straight at 7am for radiation treatments is fighting this. I’m sorry, but if I start to feel negative because I’m exhausted, sick, and in a bad mental state, telling me to “fight, fight, fight!” is not helpful. Trust me, I’m trying my best. Also, “fighting” implies that there’s a winner and a loser, and I don’t want to be a loser.
Stories of other people you know who beat cancer.
I can’t tell you how many times someone has told me their personal history with cancer after hearing my story. “I have a friend” or “my great aunt” or “my grandfather”…it’s super sad to hear these stories, but they always end with “and he/she beat it! You can too!”. Again, this is specific to brain cancer, but I wish I had something like thyroid cancer that has a high survival rate. Brain cancer is rare and is incurable. Hearing stories of other people beating cancer is definitely uplifting, but doesn’t make me feel particularly good about my situation. The one thing I’ve learned about cancer is every single case is unique. Someone with a grade 3 anaplastic astrocytoma (which is what I have) is battling a different disease if their tumor’s genetic makeup is different. There are SO MANY VARIATIONS of cancer.
Should you be drinking that glass of wine?
I should come with a warning sign… unsolicited medical advice is not appreciated. Trust me, everything I do, eat, drink, etc. has been run by my oncologist. You would be shocked at how often cancer patients communicate with their doctors. I have to notify them before a flight, before a long trip, if there’s any tiny new headache, bump or bruise…if I am doing something, you can be sure my oncologist knows about it. So please let me enjoy my glass of wine.
Well, you look great!
Thanks, but I don’t feel great. Brain cancer doesn’t really impact how I look aside from some hair loss due to radiation. I’ve had so many people say “wow you don’t even look sick!” …Not helpful. I’m tired, agitated, and my anxiety level is through the roof. So when you see me after a while and say “you look great!” when I feel like absolute crap, it’s just not helpful.