Cancer doesn't look the same on everyone, but even so, the reality of living with cancer is very different from the image we try to portray. I could go on and on about the pressures cancer patients and survivors try to live up to, but the truth is that we are all regular citizens trying to get through our days with hobbies and feelings and chore lists like the rest of the world. Here are 11 things people with cancer also want you to know:
1. I am not opposed to talking about my experience.
Sometimes people need to deal with what is happening to their body every day, and a big part of that is talking it out. This may be a given for me (hello, I have a blog) but a lot of people mistakenly think it's on the hush-hush now that treatment is over. Cancer doesn't end once treatment does. Aftercare is the most important aspect of the journey, and you better believe cancer thoughts are always in our minds every waking day. This is the biggest thing I want you to walk away with — I want to talk to you! I want to get the conversation started. More people need to be talking about cancer, and more than just the typical "you got this" or "that's so sad" type of ordeal. Cancer isn't a death sentence anymore. More survivors are amongst the population today, but also know that more cancers are showing up without any symptoms, too. It scares the hell out of me to wonder if girls walking around campus don't even know that there are symptomless cancers out there like mine. The only way to spread this awareness is to get the conversation started. Even if you're a stranger, talk to me. Sorry mom.
2. Sometimes your main job is to provide a distraction.
Although I prefer to talk it out, sometimes all a patient wants to do is forget about their diagnosis and blend in again. This, in turn, takes the pressure off of you finding the right thing to say, too. I remember a certain time in my treatment when all people would talk about was my cancer and it upset me. To help your fear of not knowing when to talk, remember that simple communication and permission can debunk this issue from the start. The times when those around me would only correlate my life to cancer were the times I simply told them I wasn't in the mood right now. It can be draining to get a papercut and have someone flee to your side to fix it just because you have cancer, or because they mistakenly see a correlation between a papercut and a cancer diagnosis.
3. It's okay to say or do the "wrong" thing, just don't disappear because you're afraid you'll hurt me.
It can be hard to find the right words to say when you hear a diagnosis, let alone the word cancer. You eventually find the strategy in communicating what works best for you. Hopefully that doesn't include ghosting those who were diagnosed. It saddens me that I can honestly think of almost ten people who haven't said a word and fleed since my diagnosis one summer. No explanation, no reason — just silence. One of those people was my best friend at the time, and another was a cousin who literally pretended I wasn't standing in front of them. There is a big, bold line between respecting a family's wishes during a fresh diagnosis, and then carrying that silence out for the entire duration of treatment. Perhaps it was my fault for posting on Facebook after the big news that I didn't want a crowded inbox, but looking back I remember only hearing of others' support through my mom's private messages, if anything. I can't help but wonder how many other patients lost friendships and relationships overall due to illness. Cancer doesn't change us, except for the better. I'm still me. Cancer didn't take my dreams and goals away, I just added "kick cancer's butt" to the list.
4. I need to feel hope, but telling me to think positively could make me feel worse.
Emotions are real and heightening while facing death. I mean, c'mon, reread that sentence. Cancer patients and anyone facing adversity (cancer-related or not) can agree that the pain they're feeling in this moment just needs to be validated and recognized, not masked by cliches. One simply cannot snap their fingers and be a Positive Petunia, especially whilst navigating the whirlwind of thoughts and emotions running through their heads at the same time as poison running through their veins. Keep it simple, and keep it real.
5. Don't take anything for granted.
It is truly a blessing to have gone through this [terrible] experience and learn that each little thing in life is such a gift. It breaks my heart to go around seeing how passively people take these things for granted. For every bad hair day you have, I would bet there are countless people wishing for even an inch of hair to grow back. The fake April Fools pregnancy on Facebook isn't funny to those trying to navigate infertility and loss. To the 1 in 4 women who will experience miscarriage in their lifetime and the 1 in 6 who will experience infertility, the words "I'm pregnant" will never be funny. It's the little things y'all. Ovarian cancer or not, chemotherapy and radiation can have terrible effects on fertility, organs, eggs, sperm, ovaries, and everything in between. Literally. Cancer survivors are not all sensitive and judging you on everything you say and do, we just want you to know that this is our reality, the same way your potentially-opposing view is your reality.
6. Chemo brain is real.
The phrase "chemo brain" is a term coined by survivors who are experiencing mild cognitive impairments after chemotherapy and radiation. Common symptoms can include mental fogginess, difficulty concentrating, being unusually disorganized, confusion, and troubles with verbal and visual memory. Although researchers still don't know the exact reason behind it, the term is very misleading because chemotherapy itself is not believed to be the sole cause of chemo brain. My memory has never been stellar, and I only had four months of chemo, but I've noticed since returning to school that it takes me longer to complete everyday tasks and I frequently find myself forgetting simple vocabulary in the middle of my sentences. The severity and duration of the symptoms vary from person to person depending on their diagnosis and treatment, but those who experience chemo brain on any level would gladly appreciate your patience and recognition of this sometimes-debilitating and frustrating side effect of treatment.
7. Cancer is not contagious.
Do I even need to say this? Unfortunately, I do. I was getting my nails done one day when the nail technician rudely questioned why I didn't get a certain type of nail polish on my nails instead of the one I chose. I kindly stated that I like the stronger gel because my nails became weak after chemotherapy. I noticed the woman stopped what she was doing and followed it up with a disgusted look on her face. "You had cancer?" she asked, as if I had the plague. Yes, I had cancer. No, it's not contagious. Can we keep it moving?
8. The patient isn't the only one who needs support.
For those of you who don't know, I stayed silent most of the time I was undergoing chemotherapy because I was too nauseated to even speak. Not talking resulted in a lot more observing, and let me tell you how hard it was to sit back and watch those closest to me go through this disease and treatment with me. Outsiders often forget that the family and close acquaintances go through it with the patient. I received the diagnosis, but quite frankly, so did my parents, my boyfriend, my brother an even my supporters. I'm sure it was just as hard for them to go through, and they did it with less support. Don't forget about the family and cheerleaders as we are all in this together.
9. Forgive me.
There will be times when the illness and its treatment make someone not themselves. We may be forgetful, abrupt and/or hurtful. Know that none of this is deliberate. Please don't take it personally, and please forgive me. Also know that each of your gestures is appreciated and actually help break down the barriers that cancer can sometimes build up.
10. I want you to reduce your cancer risk.
I don't want you to go through this. While some cancers strike out of the blue, many can be prevented with just a few lifestyle changes — stop smoking, lose extra weight, protect your skin from sun damage, and watch what you eat and drink. Please listen to your bosy. When things feel off, they usually are. Go see a doctor for regular check-ups and demand follow-up care whenever pain, bleeding or unusual lumps show up. Many people can live long and fulfilling lives if this disease is discovered in its early stages. I want you to have a long and fulfilling life.
11. I am so much more than my disease.
Lastly, please remember that I am still me. I just happen to have gone through a touch of cancer.
Take care of yourselves,
Abi
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