A friend of mine posted 31 Ways to Help A Friend With Breast Cancer to my FB wall last night. I reposted it this morning with my additions. Then, I talked to my father-in-law early this afternoon, and he told me reading my blog and reading that FB post have been some of the most helpful things they’ve had access to since all this started.
I’ve thought about it on and off all afternoon since I spoke with him and decided to make my own list. It’s going to come off bitchy. I don’t want to make people mad. At the same time, I want people to understand where I’m coming from, and maybe it’ll help someone else. Here are a few things said to me this weekend:
- You have to stop feeling the way you’re feeling. Don’t you know how bad it makes the rest of us feel?
- I know you’re scared. We’re all scared.
- Well, since you’re convinced you’re going to die anyway…
So, now you know where I’m coming from, and here goes my list…and there are probably grammar mistakes everywhere. My iPad and I are fighting. It’s winning.
- Let me be me. Let me sob, let me curse, let me break down, let me scream and yell, let me feel how I feel and not shame me for it. It’s okay for you to scream, cry, yell, curse with me or to just be quiet while I lose it. It’s not okay for you to tell me to stop because it’s going to all be okay. I am not okay right now. I need you to recognize how hopeless and defeated I feel. I do not need you to shame me for being upset. I need to you understand how scared, angry, upset, ashamed, hopeless, and defeated I feel. I’m not asking you to agree with me. But, when I feel how I feel, I’m going to sob, curse, scream, yell.
- Take care of me and accept it when I thank you and tell you I feel like a burden. Tell me I’m not a burden, make me believe I’m not, and comfort me. I told A that the one thing I desperately need right now is to be taken care of even though all I want to do is take care of others. For now, I want to, I need to, be taken care of. I’ve never asked for someone to help me or take care of me like I need now. If I have the courage to ask and feel weak, please help me out. Take care of me. I need to be selfish. It’s really hard for me to be selfish.
- Listen to me. Really listen. You don’t have to agree with me, but please listen to me, even if what I’m saying is hard for you to hear. Please, just listen. Rub my back or my shoulder. Hold my hand. Rub my head. But, listen. Please listen. I don’t necessarily want you to agree with me. I just want to be heard.
- Be honest with me. I can’t handle the “don’t worry about it” or the “we can talk about it later.” No. Tell me. Be honest with me. My brain is a scumbag, and when you beat around the bush, I construct terrible scenarios.
If you’re not sure how to act around me, that’s ok. I’d rather you tell me instead of you acting fake. I don’t know how to act around me either. You’re not alone! But, it feels like I am when people are being dishonest with me.
- DO NOT TELL ME TO BE HAPPY, FIND THE GOOD, OR BE POSITIVE. I put that in all caps for this reason: YOU want me to be happy, find the good, be positive, and act cheerful. YOU want that because it’s hard to see someone you care for in pain or hurting. I get it. I really get it. Here’s the thing: I AM hurting. I AM in pain. I can’t see the other side yet, and you need to accept that about me. If you can’t accept that, you can’t accept me. I’m not asking you to see my point of view. I’m asking you to understand this is how I feel right now and telling me I just need to find the one good thing or to consider recovery a vacation is ludicrous to me, shames me because I don’t feel that way, and angers me because how is this a vacation? I had my breast chopped off!
- I’m not handling this well. At all. I know it. You know it. We all know it. But, consider my point of view for a minute: everyone, including my doctors, were surprised by what happened in surgery on Wednesday. The sentinel nodes looked normal. The sentinel nodes felt normal. Then, they weren’t. There was microscopic cancer found in both sentinel nodes. I have cancer in my lymph nodes. We don’t know how many nodes are affected. We don’t know what stage this cancer is anymore. We don’t know if it’s spread. We don’t know anything anymore except I have cancer. Still. The amount of questions we have just sky rocketed, and we don’t know what’s going on. Understand, for me, I thought Wednesday was one of the ends in this road. It was supposed to be, but like EVERYTHING that has to do with my breast cancer diagnosis, Wednesday went wrong. It went so very wrong. The surgery did not go the way it was supposed to go. I woke up breastless. I woke up to a devastated husband who had to tell me the cancer is in my lymph nodes and had to be the one with me when I discovered I lost my breasts and woke up pretty much flat except for these awful surgery lines. I woke up to most of my nightmare coming true. I’m trying to handle it. Let me be who I am right now, even though it isn’t what anyone wants for me. I can begin lying and saying I’m fine, but if I do, it’s only to make you feel better. I’m not above doing that, though. My closest friends can tell you I’ve done that on and off for months when I think people have had enough of cancer L. I hide the real me. It hurts me, but those I love feel better. Guess who I’m going to choose over me? Them. Every time.
- Don’t ask me questions. I don’t have any answers yet. I was supposed to have all the answers on Wednesday. Instead, I’m back at Square One. And, I’m terrified of the answers at this point. I don’t want to speculate. I don’t want to talk about it. Unless I do…then I’ll let you know. But, don’t ask me to talk about it. I know you’re curious. That’s why Google was invented. That and cat videos. I’m not a walking almanac of HER2 breast cancer information. If you want to know, go Google it. And keep the results to yourself. I definitely do NOT need to know what Dr. Google told you. I don’t care what Dr. Google tells you. I care what Dr. H. Dr. L, and Dr. O tell me. Google has already told me I’m likely to die from this. There, does that help your research?
- Offer specific help or tell me exactly what you can or want to do. Right now, we’re good on dinner. But, if you really want to know, the things I want are small Oreo blizzards, flowers, cups with straws, ice cold water, and coffee or hot chocolate for my Keurig. I could use my floor vacuumed and some help with laundry. I’d cry for a pair of purple or bright blue leggings, but truthfully, more than ANYTHING, I’d rather know I have people in my corner who aren’t running from me as I deal with this right now.
- Don’t give up on me or our friendships.
I need you. Most of you who know me in real life know I have a very small, very close knit group of friends that has expanded rapidly, in a very good way, since August. At the same time, though, as I’ve been more “real” on FB about this roller coaster, I’ve been un friended by a few people because I’m not my sunny, sarcastic self. I generally don’t care they unfriended me, but it stings. And, it’s every cancer patient’s worst nightmare: the loss of relationships because it’s hard having a loved one ordering with cancer. Please don’t run away from me. I NEED my people. Please stay my people, even when it’s hard, like now.
- Lastly…guys, I hate the pink ribbon campaign. There, I said it. I hate it. We’re ALL aware of breast cancer. We don’t need breast cancer awareness. We need breast cancer detection. We need breast cancer treatment. We need treatment options. We don’t need a pink ribbon that says “I support breast cancer awareness.” Who doesn’t support it? Who isn’t aware of it? For real…? We’re all aware of it. October is living proof that breast cancer awareness is alive, well, and commercialized. Don’t give me a pink ribbon. Don’t give me things that are light pink. Pink is so far from my favorite color. I may be curled up in my recliner cave with a pink blanket, but it’s hot pink and covered with Littlest Pet Shop animals because it was once my daughter’s comforter before her room exploded into zebra stripes. I like animals. I like the Littlest Pet Shop. The blanket is soothing. It just happens to be bright pink, light pink, black, yellow, green, and more. I do not want to be a walking ad for breast cancer. I already am. No one is going to mistake me for anything but a breast cancer patient. My favorite colors are bright purple and bright blues. I’m attracted to bright colors. I even like bright pinks. But, pink is not my favorite color, especially just because I have breast cancer. It doesn’t help. The flowers, the cards, the little moments or “I’m thinking of yous” help so much more.
I’m a smidge better physically. I’m caught in a storm emotionally. The storm has given me a few breaks today, but I’m still in it. I don’t know when I’m coming out of it. I know I’ll come out faster with friends and family holding me, but you have to hold ME, not who you want me to be right now.