I don’t even know where to begin with this to be completely honest. This will probably be a post filled with a bunch of mumbo jumbo but these are my thoughts. These are the thoughts and feelings I’ve had this past week and to most they won’t make sense, but to some, to some it will make perfect sense and I hope by saying these things you’ll know you’re not alone.
First of all when people think you have cancer they only usually think about the fact that your health is compromised. When people think of chemo you think of hair loss and nausea. You think our Go Fund Me is just to help out with bills because you assume we are still getting paid. Let me hit you with a severe reality check so you can somewhat better understand.
When you tell someone diagnosed with cancer to stay positive and everything will be okay…think to yourself is that what you would want to hear right after you get diagnosed? No probably not. You probably want to hear “THIS SUCKS SO BAD BUT WE WILL GET YOU THROUGH IT” Right? When you tell someone whose about to lose all their hair from chemo “It’s just hair it’ll grow back” do me a favor. Walk into your bathroom look in the mirror and imagine yourself shaving your head until it’s bald. Not a cute pixie cut, not a cute shaved cut, but completely bald with no hair in sight. How does that make YOU feel? It makes you feel like it’s not just hair right? If it was just hair people wouldn’t spend hundreds of dollars on it, if it was just hair people wouldn’t cut and color it after a breakup, if it was just hair people wouldn’t change it when they want to start fresh. It’ our identity and when you lose your hair, you feel like you’ve lost yourself. The only thing worse than losing my hair the first time is watching it start to grow back all to lose it again. Which has become my reality as of this week.
You know what else sucks? Thinking you’re protected while you have cancer, thinking that you chose a company to work for that has your back and it turns out they don’t. Finding out you have cancer the first time and you’re unable to work only to find out your journey with cancer isn’t over and the company you work for starts to look at you as just another file on the desk. I lost my job this week after being on disability for 8 months. Let me clarify..Not my position…My job. Do you know what happens when you don’t have a job? You don’t have insurance. Do you know what happens when you don’t have insurance? You can’t get rid of cancer. I am now expected to “shop around” as she put it for insurance companies and pay for it with the money I’m not making. People don’t tell you that when you need insurance and money the most they cut you off. They cut you off with no sympathy, no apology, and no remorse. Think about how hard it already is to pay for insurance because it comes out of your checks. Now think about paying a ridiculous amount of money because you no longer work for a company that supports you. No one talks about this part of cancer and what it does to you mental health. No one cares that you have cancer because they have to go on with their “policies” and their lives. Well what about me? What makes my life less important than a dollar sign? This whole situation is worse than the actual cancer inside of me. This part has become the most stressful thing I’ve ever had to deal with, and I’ve been told I have cancer twice. So before you get annoyed with the GoFundMe’s on your page think about it.
You know what else people don’t talk about? How I didn’t have an option to freeze my eggs before treatment. I didn’t have an option to collect anything or freeze anything. I was given a shot in my ass once a month and basically told to hope for the best. I am 27 years old and I am now going through menopause for the second time. Not only that. I don’ know if I’ll ever be able to have kids. Especially after this intense regimen and transplant I have to do. So why doesn’t anyone talk about it? Why doesn’t anyone talk about anything besides losing your hair? I cried about my hair when it happened and I will cry about my hair when it happens again but you know what? I KNOW it will grow back, but you know what I don’t know? How I’m going to afford insurance when my pay keeps dwindling and I still have my normal bills. How I’m ever going to be able to have children or if I can even carry my own children? How long until my body recovers from this nightmare? How will I mentally recover from this trauma? What the fuck am I going to do for work when I’m done with this?
No one talks about how it is your responsibility to handle everything from bills, to medical bills, to disability bullshit, to figuring out when you’re getting paid, too trying to be a normal person. No one talks about the shitty people in the medical field who look at you as just another bald head and a birthday. How some people really shouldn’t have certain jobs if they feel nothing for the patients. This isn’t retail. Your “clients” “customers” “guests” whatever you call them at work we don’t want to be here. We would much rather be anywhere else, but you know what? We’re alive. We’re alive and we don’t have time for your attitude or negativity.
I used to be silent about a lot of things in the beginning until I realized that I fought to get to this place. I fought to be this person and to be here. I beat cancer once and it came back and I’ll beat it again, but I will not be pushed around or forgotten about. They tried to switch my Nurse Practitioner after 7 months of having someone that I truly respect and honestly know she cares about me and her job. They switched me to someone who literally said “So did they tell you, your Hodgkins was back” who in their right fucking mind says that to someone? Then she proceeds to tell me I need to have my heart checked because of the stats on my chart. Oh? The stats that are from when I was in the hospital with a 13 cm tumor in my chest and my heart was working three times as hard? Or how I have PTSD from the cancer center mixed with “White Coat Syndrome” mixed with a pool of anxiety. A year ago I would have done that test and I would have paid the price of that hefty hospital bill, but the difference between then and now is I KNOW my body for starters and my heart rate is only “above average” when I’m in the cancer center, and while were at it why wouldn’t my Oncologist and Nurse Practitioner of almost a year never suggest that? Maybe because they actually KNOW me. Maybe because they took the time to look at me as more than a file.
No one talks about all the bullshit we have to deal with outside of our side effects. No one talks about how your friends become strangers and strangers become your friends. I will honestly say. Cancer survivors are the most amazing people I have ever connected with and everyone needs one in their life.
No one talks about the “friends” that just text you just to say they texted you while your new diagnosis is fresh in their minds, but they don’t actually intend to make an effort because of what’s going on in their lives. I am not angry at these people but I also no longer consider them friends.
No one talks about just how little information your doctors actually give you because honestly they’ve never dealt with it personally before. No one talks about the hours you spend researching every single thing going on in your body. No one talks about how often you truly think about death and how much more real it all seems. No one talks about the anxiety panic attacks you have before your next treatment because you still haven’t gotten over the trauma from the last one.
No one talks about how you’re cancer free but your sure as hell far from fine and okay. No one talks about the hell we see everyday, the hell we go through, and the hell no one understands besides other survivors.
That’s okay because I’ll talk about it. I’ll continue to talk about it until people are more educated and kind. I’ll talk about it until people TRULY try to understand what it’s like to have your whole life turned upside down. Being positive doesn’t make things okay, it makes things bearable. It makes you appreciate the little things people do for you and the small doses of good days you have. It makes you love and feel harder than you ever have. It makes you appreciate those in your life who have showed up for you. It changes you. It makes you mourn the loss of the person you once were and you create the person you have become. I will not give up. ever. and neither should you.
This post was a heavy one but honestly being positive 100% of the time is unrealistic and bad shit and disappointments just keep happening to me but I try everyday to understand why and to find meaning in all of it. I’m still trying. I won’t stop trying until I have more answers. Like I’ve said before. Advocate for yourself and never stop.
XOXO Until Next Time,