I truly debated whether or not I would actually post something like this, but several people encouraged me to just do it! I just want to say that this is from MY PERSONAL EXPERIENCE and OPINION. I did not title this post "what people with cancer do not want to hear" specifically because I do not know what other cancer patients do not want to hear. I only know from my own experience going through what I did. I also 100% do not mean to call anyone out or offend anyone at all! I honestly have no specific incidents in mind for any of this, just simply looking at things overall. I know I have definitely said or done some of these things before I went through this. This post is NOT meant to make anyone feel bad or apologize (mainly because if you had done one of these things I probably do not even remember so no need to bring it up again ;) ). I totally understand it can be hard to know what to do or say. I really do get that everything is said with good intentions. I hope you read this post with humor and understanding :).
Moving on!
In no particular order, here is my list of "guidelines" for people who know someone with cancer:
1. "There's a reason for this", "everything happens for a reason"", "maybe you can help someone else in the future", etc you get the gist. Listen, I used to believe the everything happens for a reason quote. I still kinda do. BUT that is so not what I wanna hear while lying in the hospital bed waiting for chemo. Whether true or not, it is hard to focus on those things while sitting in the chemo clinic while all your regular college aged friends are ya know AT COLLEGE where you used to be. I LOVE helping people. I have always liked the idea of being able to help someone (fits my teacher persona). I am happy I can help people down the road, but going through what I did simply for the reason of maybe being able to help someone down the road was not all that convincing at the time. "You have mouth sores so bad you are in ICU, but don't worry because down the road you can help someone!". See how that just doesn't work? I know those words come with love, but maybe just keep them in your head! Or feel free to share if you know what the reason is or how I will help someone! That would have been better to hear :).
2. Please do not tell me what I should or need to be doing. Unless you are one of my doctors, I do not really care to hear what YOU believe I need to be doing/eating/drinking. You get cancer and all of a sudden everyone is a doctor! I am open to tips and suggestions, for sure. I learned and used a lot of extremely helpful things by people suggesting them to me. If you approach it in a way where it comes off like you are telling me what to do, I do not appreciate that. Instead, try "I suggest blah blah blah" or "You could try blah blah blah". I consider myself pretty open minded and I am always down to hear what people have to say, just don't boss me around unless you are being paid to ;).
3. Along that same line, I truly do consider myself open to hearing about pretty much anything (unless you are trying to tell me why Trump would make a good president...then I would block my ears and run away). I am not a "crunchy" lets all hold hands and sing kumbaya kind of person. I trust modern medicine and I like gluten. I do like to use natural type products when I can, but that Tom's brand deodorant gave me a terrible reaction, so I will stick to my Secret, even if it isn't made from only soap and lavender essential oils. If you wanna tell me your theory on how to cure cancer, I am all ears. I will smile and nod politely, like I often do when my mom launches into a long story, but in my head I am probably thinking about Harry Styles. If you want to tell me how your sister's best friend's mom's hairdresser's nephew's girlfriend cured her cancer with some special leaf that is only found in the remote forests of South America, I will listen happily and celebrate the success. I can remain polite and think you are totally crazy (kidding!). I know it is said with good intentions, and I appreciate that (plus I like to learn knew things), but I trust my oncologist and surgeon 100%. They are some of the smartest people I know. I truly do not see how anyone who has personal experience in oncology would believe that "cancer is a business" and they are holding out on curing it so people can continue to make money. I am pretty sure most doctors with a heart would much rather be slightly more poor instead of delivering the news they do each day. If that is your opinion that is fine, but please do not share that with me!
4. "Keeping fighting!" or "stay strong!"...like as opposed to what? What am I gonna do just stop? I know those are common tag lines, and I get it, but seriously who thought of those? First off, I never really felt like I was "fighting". It wasn't like I could feel the chemo and cancer cells having a wrestling match in my body. I am not sure I totally like the word fighting at all, but whatever. I just never got that saying because I wasn't going to just "stop fighting". Did I want to? Absolutely, but "keep fighting" does not mean much to me.
5. Say SOMETHING! Honestly, I totally understand that it is extremely hard to know what to say in tough situations. You do not want to say the wrong thing or maybe you don't want to insert yourself in a situation where you stand on the outside of the circle. I totally 100% understand. I get super awkward when I am put in unfortunate situations. I personally have found that I was happy to hear ANYTHING from ANYONE over the course of my treatment. It is so easy now, in these days especially. I am not expecting page long messages from anyone, but a simple "thinking of you" or "hope it is going well" every once in awhile means more than you know. Even if I don't answer, I just enjoyed hearing from people. Don't worry if you haven't talked in years or weren't close. It just means a lot to know people are thinking of you. I have heard differing opinions on this...that those who are not close do not want to seem like they are inserting themselves, but I can promise that from my POV, it would not be like that. I like to hear SOMETHING over nothing at all!
6. I pray I do not come off sounding ungrateful after writing this, as that is SO not my intention! I want to share my experience, so that is what I am doing. I have been SO INCREDIBLY blessed to receive SO many kind gifts from SO many people. I did a terrible job with thank you notes (in fact, I just found a stack that never got addressed...PLEASE forgive me). I am grateful for everything I received as it truly cheered me up. So, here is my word of advice: The beginning days of this (back in March and April) were SO overwhelming. I was overwhelmed with the news, with telling people, figuring out a plan, etc. I received so many gifts at the beginning, it too became overwhelming. I was also extremely lucky in that I received the occasional package here and there throughout treatment, but I wish the beginning gifts had been more spread out. PLEASE do not hear this the wrong way! I totally get that when you get bad news people just want to do something to make it better. I understand that completely. I was so thankful that anyone spent their time and money and thought of me! I enjoyed getting packages, and I think it would have been cool to have them spread out. I know you cannot tell people when to get you things, but if you should find yourself knowing someone facing a diagnosis, maybe send a card or something small and send the package a few months down the line once things have calmed down. It makes your day to know people are thinking of you!
7. Do not be needy! And be forgiving! I felt I did an okay job of keeping everyone updated on things. I did this to avoid having to send a million personal calls, emails, texts, etc. If the information is out there, do your best to find it. Don't require or make the person feel bad if they do not answer your texts! I am not talking about forgiving bad behavior or unforgivable things, but do not hold it against me if I miss your call or do not answer your message or do not want to visit that day. I sometimes get an overwhelming amount of messages. I read them all and think "oh yeah I need to reply", then I get distracted. I did a good job of this earlier, but lately I have gotten lazy! I have texts I never answered that I need to and I have done a terrible job of responding on Facebook! Please forgive me! (and do not be surprised if you get some notifications that I responded to you on old posts!). I truly read every message and appreciate them more than words!
8. Please do not start a conversation with me and then proceed to tell me all about all your family members who have died of cancer. Cancer is a terrible disease, and yes, sometimes people die from it. That is a fact that no one is oblivious to. However, while in the midst of cancer treatment, I do not want to hear all about your grandma who died of this cancer or your cousin who died of that one. I am deeply sorry and will give you my condolences, but that is just not something I want to hear about. That was their story and my story is my story. Cancer sucks, but I have a positive outlook and would like to talk about other things :).
9. Do not stare at me in the store!!!!! If you are curious or want to know, just ask! I know it is not a "normal" situation, but please do not stare at me. I get kids do, but they are young and are still learning. There is no excuse for the adults in stores I go into to stare at me. I will happily talk to you about my experience and raise awareness. I really want to carry around cards to hand out to people that I catch staring. If you are going to stare, at least smile! Humph...some people!
10. Do not stop sharing your life with me!!! I am happy to hear about your life. I know it may seem awkward because you don't want to sound like you are complaining or whatever, but I always like to stay connected! Just because I have cancer doesn't mean I can't sympathize your problems with you. Just do not try to make it sound like writing a paper is as bad as mouth sores or chemo and we will be fine :)!
I think that is it for today! Should I come up with more, I will add a part two! My next post will have to be on what I learned through this experience, so we can all share in our learning together! I hope you can find pieces of this post that are helpful. I will be happy to share my experience or answer any questions should you ever have any!! All in all, I am truly blessed with EXCELLENT people in my life. It made going through this crappy ordeal so, so, so much easier!
All the love to all of you!
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