Leaning into the Storm of Cancer

You may have read them-the “What Not to Say to People with Cancer” articles. I used to skim over them, thinking I was all good. Me? I would NEVER say anything to offend someone with cancer! I am a thoughtful person-I’m the person who won’t even tell someone I’m praying for them unless I can actively remember to do so, so yeah...I was good I didn’t need to read such articles.

WRONG!!

‘Cause guess what? When you’re on the other side and actually HAVE cancer and a gynecological one at that-AND one that is caused by a virus. Guess what? People say some crazy shit. Stuff you would never imagine would cross the lips of someone who is supposed to care about you. Now, as I stated, I see myself as a reasonable person-so most of this crap I worked really hard to brush off and tell myself, “Well, they are well intended. They didn’t mean it the way it sounded.” My counselor even worked with me on phrases to shut people down in person. She encourages me to tell people they are being jerks, but I am still trying to find that voice. Perhaps this is it, through this blog post. I usually just tell myself that people don’t mean it really,  and then later call my absolute closest people to vent or screenshot messages from people and type in all caps to my best friend. I have found lots of articles on this subject, yet when meeting other survivors it is often a main topic of conversation. It’s hard enough having freaking cancer, and managing the feelings of those who are the very closest. Much less managing idiots on the fringe, who think they “have to say something.” Why is that? I think it’s because no one really cares until it’s them or someone they love. Like really love. So if you’re reading this and think you don’t need to, then you’re the exact person who does. If you're gonna lean into this storm, be prepared to be uncomfortable and teachable.

Here are some common mistakes that I have personally experienced MORE than once.

1. If someone you know gets a diagnosis and you find yourself overwhelmed with not knowing what to say-figure that out before opening your mouth. What I mean is, if you’re not comfortable saying something, just wait. That’s okay. You don’t have to say anything right away and perhaps you’re in shock yourself and need sometime to gather your own emotions and thoughts. That is better than getting in front of the person, fumbling, and saying something trite. Survivors are fighting. Really fighting, real things-life and death stuff at any given moment. REAL. We don’t want to hear trite empty sayings-we know to hang in there, we know to keep our head up. Perhaps instead of throwing out a “chicken soup for the soul” comment you could say, “I’m thinking of you.” or “I’m here for you.” or something I personally appreciated was someone acknowledging my pain by saying something like “I’m so sorry you’re having to deal with this. This sucks.” or “I know things are really hard right now, I can’t imagine.” THOSE seem more real and do not minimize the person’s cancer. The prior ones, that are more of a “hang in there” often make the survivor feel like cancer is not a big deal, and that you’re equating it with having a bad week or day. If you are really close with the survivor just being WITH them can make a difference.
2. If someone you know gets a diagnosis of a gynecological cancer or oral cancer that is caused by HPV, they already feel the very real stigma of that. You turning up your nose and saying, “Isn’t that caused by an STD?” Or “Isn’t that preventable?” Yeah, that doesn’t help the survivor, makes them feel shame, guilt, and again minimizes the pain and fear they are feeling with a cancer diagnosis.
3. In my personal case, I had not had a pap in several years. They were a few people who said things like, “WHY?? Oh I bet your oncologist got all over you for that!!” To which I had to say(after picking my jaw up off the floor), “Actually no she didn’t. She encouraged me that I can’t change the past but can change the future. She didn’t shame me for choices I have already made.” Y’all, I would say this was one of the most hurtful. If your friend or loved one missed paps and abnormal cells have grown and she gets a full blown cancer diagnosis, the LAST thing she needs is YOU making her feel guilty for not staying on top of check ups. I personally have reasons why I didn’t go, which will need to be another post, but listen to me; while there may be truth in those words, when you’re facing CANCER, you do not need people in your life making you feel worse about ANYTHING.
4. If you are someone who is into alternative/preventive medicine, great. I am super into nutrition, highly believe in it and there is a place and time for that conversation. But only if the opportunity presents itself, or you are very close with the survivor, and you feel they are open. Walk lightly.  I had two people, independent from the other, tell me in the height of treatment, that I needed to eat more mushrooms and the other was pushing cloves. Again, I feel these people were well intended but honestly I am not super close with either of these people-one came in the form of a message and the person had not said boo to me the entire time, and the other was from someone who said this definitively, in passing. Y’ALL!!! Seriously?? Again, it  minimizes cancer and invalidates the survivors treatment. I understand that there are cases where the survivor has been in constant treatment for months/ years and there may be an opportunity for someone to say, “Hey, have you talked your doctor or thought about___?” But most of the time that is just not going to be your place unless you are walking very closely with the survivor.
5. If the loved one is diagnosed with a cancer that will or has the potential to make the survivor infertile, PLEASE don’t say “Well, there’s always adoption. Lots of kids out there need a home.” It’s not that this, among the other things are not true-it’s that when you are in the throws of cancer AND you’re losing fertility, it sucks. It’s painful. It’s so overwhelming and can make you feel sorrow on a level you weren’t sure even existed. To hear someone say, “Well, you can always adopt…” makes the survivor feel like their feelings and emotions of grief and sadness are not warranted and again, minimizes what they are facing. We KNOW there is adoption. We aren’t stupid, we are grieving a loss, a death of a dream that has been inside since we were little girls playing with baby dolls. Yes, there is adoption and it is oh so beautiful, but let us grieve and feel what we are losing.
6. Lastly, try to steer away from the, “If you need anything, let me know.” I know, you’re probably thinking, what is wrong with that?? Well, you see when you get a cancer diagnosis you are completely overwhelmed and your brain is in a thousand different places from-What am I going to do about work? How am I going to take care of my kids? How much is this going to cost? How long is this going to take? Am I going to die? For myself, I am already the person who is notorious for not asking for help and trying to do everything on my own, so I have grown a lot during this time. After talking with other survivors though, I have concluded that when someone is specific it is waay more helpful. For example, “I’m coming over on Tuesday to bring you food and will do any errands you need.” or “I am coordinating a dog walking schedule for you or a meal schedule for you.” or “I’m coming to take the kids on Friday night to a movie and dinner, so you don’t have to worry about that.” THOSE things are so helpful and takes the thinking responsibility from the survivor. The survivor doesn’t need something else to think about. Even the smallest gesture can go long way. Think about times when you yourself have been sick with something like the flu-what were some things that were hard for you to get done? Think about your survivor feeling like that long term, and get creative in some specific things you may be able to help with.

I guess my overall advice would be to be more quiet than not, if you’re feeling unsure. Be present for your survivor but don’t feel like you always have to have the “right words.” Sometimes not saying anything and just being-is the very best. I would even go as far to say, if you feel like you need to “say” something and you’re not sure...say THAT. I found so much comfort when people close and not that close to me said things like, “Holly, I’m sorry. I just don’t know what to say.”

A cancer diagnosis of any kind or stage is hard. If you’re feeling overwhelmed, think about how much more the person you love with cancer feels. I have found for myself and other survivors, you really find out who is legit and who’s not. It surprised me who leaned in and who steered away. If you’re gonna lean in-be thoughtful and present. Your survivor may not have the ability to say it, but she needs you.

I have had an army of support and don't have pictures of everyone, but here are several of my people who chose to lean in.