You just don’t get it. I know you think you understand what I am dealing with because you knew someone with cancer. Perhaps your mother, or friend had breast cancer and so now you think you understand what I’m going through. You don’t.
This thought has been weighing heavy on my heart since my diagnosis. I thought I got it, I didn’t.
I didn’t get what it felt like to actually hear the “Cancer” word. I was trying to listen to the details and pay attention, but really just wanted to keep a straight face for as long as it took to maybe ask one appropriate question and get the heck out of there to go get my husband, but he wasn’t any where near…he was out of town for work. I didn’t want to hear all the details until he was with me. We drove home under the weight of what I just been told.
I sat in disbelief much of the drive home. That day was the worst. I pretended everything was fine because I didn’t have any details yet and wanted to keep it private still. I was positive I had crappy cancer and so my mind went straight to very dark places during that week. There’s no way that you get it unless it’s happened to you.
I didn’t get how hard the waiting would be. It was literally the worst part. The “official” diagnosis process seems to take forever. The different consults, the biopsies, the exams and procedures. I went through the motions trying to stay positive, but at that point, I had no idea what I was dealing with and the unknown was terrifying. How bad was it Knowing the cancer is there and not doing anything to treat it yet is an awful, helpless feeling. I wanted it O-U-T NOW! I’m sorry, but you just don’t get it.
I didn’t get how awkward it was to tell other people the news. I just blurted it out! Shock value seemed to work best. No beating around the bush…straight to the point with a brave face and deep breath. People didn’t know what to say. If they said anything, it was about me getting “new, perky boobs” which at the time, I had no intention of doing.
There was some relief when the word started to spread. I didn’t have to keep telling people and watch them struggle with being uncomfortable and not knowing the right way to react. This nasty secret was finally out. You don’t get what it felt like to get the sad looks all the time.
Shopping or seeing someone for the first time after finding out. I got the head tilt, sad smile, and a soft “How are you?” Which I quickly smiled and reassured them “I’m hanging in there” and change the subject. Don’t get me wrong, I appreciated all the well wishes and concern, but it sure took a little while to get used to the pity. I’m sorry but you just don’t get it. No, you don’t get it.
I didn’t get how weird it felt to be called “brave”. It’s a word that gets thrown around a lot, but I had no choice but to be brave. I got through most of it just fine. I’m getting treatment because I HAVE to. That doesn’t really make me feel like much of a hero. You just don’t get it.
You don’t get how much I googled…searching for information, hope, stories like mine, reassurance from women who’d been there, done that. It was impossible not to. I had to educate myself on this crappy cancer. I wanted to know every “medical term” to help me feel in control of this situation I’d been forced into. I wanted to make informed decisions about my care and treatments.
You don’t get what really goes on at all those “other appointments”. Why do they give you a gown when they are just going to uncover me and poke, prod, feel, and stick me with needles. You don’t get the procedures that were humiliating or painful. You don’t get how confusing “options” really are and how many doctors there are that want to see you ALL the dang time for next five years!!! I wanted to be involved in my own care, but the stress of all the options was sometimes too much. I’m sorry, but you don’t get it.
You don’t get how it sometimes feels like I am all by myself. I have a great support system in my family and it was surprising the people who stepped up to help, bring meals, cards, and was just there when I needed to talk. You don’t understand how much it hurt my feelings that some of the people I expected to be there were NOT. People acted differently towards me and it hurt, a lot. I’m not contagious! You don’t get what it feels like to not have boobs and to have fluid in your chest wall. You don’t get it when I can’t sleep on my side because my incisions almost go all the way across my chest. You don’t get it when I say I hurt or I’m uncomfortable. You just don’t get it…unless you’ve been through it.
You don’t get the mood swings. One day I might feel confident that I’d completely beat this crappy cancer with no problem; I felt like I could take over the world! Bring it on! And for no good reason, the next day I was just convinced I was going to be one of those sad stories people tell their friends about. The moods would sneak up on me without warning. Literally anything could’ve been a trigger. You don’t get what it’s like to not be able to lift your arms or dress yourself due to the dang underarms being swollen from lymph gland removal. You don’t know what it fells like to look at yourself in the mirror and have a total of 14″ of incisions staring back at you. My body changed so quickly. It’s hard since my appearance is tied more closely to my identity than I’d like to admit and these were constant reminders of what I was up against. I just wanted to feel like myself again and MOVE ON past this crappy cancer. I am at 8 months now and 3 surgeries later and still healing. It takes more time than I thought it would. I’m sorry, but there’s no way you get it.
You don’t get that when I said I was tired, I really meant so much more. Sure there are words like exhaustion and extreme fatigue, but there should really be a separate word just for cancer patients, because it’s crippling! Really! Some days I really wondered how I trudge forward. And then there were the days that I had lots of energy and was restricted from not lifting anything heavier than a carton of milk because I’m still healing on the inside. I reached up in a cabinet and pulled something…now it has to start all over to heal back again. You just don’t get it.
I didn’t get how much time this really takes away from my life. I was told phrases like “Cancer is like getting another full time job” or “Life doesn’t stop for cancer” when trying to prep me for what I was about to embark on. But now they just seem like corny catch phrases. Stupid crappy cancer! It completely took over my life! I had to stop doing things I love, I had to cancel plans, church, vacations and other activities. I had to miss out on things that were important to me. Those things made me cry more than having the crappy cancer did. You just don’t get it.
You don’t get how much I worried about my daughters and my grand daughters. I worried about how this was going to affect them. I worried about not being able to keep up with them or be able to enjoy them on my bad days. I not even pick up my grand babies! I was concerned they’d be scared and confused. And honestly, I worried about leaving them. You just don’t get it.
I understood that everyone promises “in sickness and in health” when you get married, but I still felt like he didn’t deserve this. I felt thankful when he would say “go sit down and let me take care of this” but my heart hurt thinking about a future that didn’t have me in it. Or him in it. What would I do without him? How do women do this alone? He was beyond caring and loving. He kissed me and told me I was beautiful, sexy even! (Love is blind) And I know you don’t get the emotions of that. No, you don’t get it.
I didn’t get that it never ends. Never. I used to think that cancer will be just a phase in my life. Just like high school or something…it seems like it drags on and on when you’re in it, but I know in reality this will all be a memory. But it is not a phase! The treatment won’t last forever, but I am changed forever now. The worrying won’t stop, the uncertainty won’t stop, the fear of recurrence or an awful end won’t stop. I live with crappy cancer. I will always live with crappy cancer and it’s recurrence. The next five years seems to be that “magic” time frame that I will deal with this crappy cancer. I hear that gets better but only time will tell. And time is precious. I’m sorry, but you just don’t get it. You want to. But unless it’s happened to you; unless you’ve had crappy cancer, you don’t get it.