The poet Maya Angelou wrote, “Do the best you can until you know better. Then when you know better, do better.”
It’s difficult to know how to react to someone who has cancer. What should you say? How should you act around them? I’m sure each cancer survivor could make their own rendering of this list. My goal with my version is not to criticize anyone’s past actions, but to help us all know better, so we can do better.
My patient identification number is blah-blah-blah. And that’s what I felt like at the start of my cancer treatment; just a number. Going through treatment, these were the Top 10 things I wish everyone knew about having cancer™ …
10. When I say, “I’m fine,” I’m lying.
Why? Because I can’t stand to explain what I’m going through one more time. Because every time I do, I remind myself of the details. And I want to forget. So, I lie. If you really want to know how I’m doing, it’s okay to respond, “No, really, how are you?”
9. When you ask me if I’m afraid and I say, “no,” I’m lying.
Why? Because I have to be strong for __________. Maybe it’s my spouse or significant other. It may be my child or children, or my siblings or parents. Whoever it is, I have to be strong for them. Because they’re trying to be strong for me. I have to make them believe it’s working, so that *I* can believe it’s working.
8. When you ask, “What can I do to help?” it makes me want to scream.
I am facing the most physically, psychologically, and emotionally trying ordeal of my life. Don’t make me evaluate your willingness or ability to do any of the 1,001 things that are now on my To Do list because of the words, “you’ve got cancer.” Make a specific offer of something you’re already willing and able to do to help. “Can I wash your car?” “Can I do your laundry?” Or, just show up and do something. I promise, if I look out the window and see you mowing my lawn, I will not call the police.
7. If you offer to help, and I accept your offer, do what you say you will do.
I am about to face a world of disappointments. My treatment may not be as effective as I had hoped. My side effects will likely be worse than I was told. My recovery is taking longer than I can stand. Be the exception to the rule. Be the stability that I’m having a really hard time finding right now.
6. Yes, someone else has told me about your herbal tea, essential oil, eye of newt, holistic lip balm that will magically cure my cancer in one application.
But since my care team has never heard of it and they cure people with cancer every day, I’m going to sincerely thank you for your compassion while ignoring your advice, however heartfelt it may be. If you persist in promoting “alternative cures,” I may also block you on social media and even in real life. Just. Stop. It.
5. Yes, I’m lonely. (You’re probably thinking: With an attitude like that, no wonder!)
Cancer is not just a disease, it’s a place. Once you’ve been sent here, you can never go back. It’s lonely here. And often, being alone makes it even scarier. Just come sit with me. You do NOT have to say the right thing. You don’t have to say ANYthing. Just being with me matters.
On the flip side of that coin, while I am lonely, sometimes I also need to be alone. Because, sometimes, I just need to be able to think, or to kick a piece of furniture, or to punch a wall, or to scream at God … with no witnesses. Please don’t be offended. It’s not you, it’s me.
Yes, it’s a paradox. If you want to know whether I need you, or need to be alone, you’ll just have to work up the courage to ask.
4. Speaking of asking: Please don’t ask my family about me without also asking about them.
They are facing cancer, too, albeit from a different vantage point. When you ask my loved ones about me without asking about them, you are discounting their feelings and magnifying their pain. That hurts the people I care about the most, which hurts me. I can handle it if you hurt me, but not if you hurt them.
3. No, I’m not okay. I’m different.
My current different may be “less bad” than when I was in treatment or immediately after treatment. But that does not mean I’m okay. In order to kill my cancer, they nearly killed me, more than once. I may be okay, eventually. Or I may just have to get used to my “new normal.” (I don’t know a single cancer survivor who doesn’t hate that phrase!) One thing I will never be is, “who I was before.” I’m going to have to get used to that. So will you.
2. Unless you have had cancer – and in many cases, unless you have had the same cancer as the survivor you’re talking to – no, you do not understand.
Please stop saying that you do. It hurts. It really hurts. It also hurts when you question our symptoms or the severity of our side effects. Stop trying to make cancer make sense. Stop trying to make cancer treatment make sense. Stop trying to make the side effects of cancer or treatment make sense. We’re talking about cancer. None of it makes any sense.
1. I don’t know.
I don’t know if my cancer will return, though I’ve read every study ever done about my particular cancer and can quote all the relevant statistics. (Yes, I know it’s more likely than most cancers to return.) I don’t know if my side effects are permanent or temporary. I don’t know if my side effects will get better or worse. I don’t know if my “new normal” will be enjoyable, just bearable, or intolerable. I just don’t know.
But, I’m okay with not knowing. Why? Because regardless of what other adversity I have faced in my life, and there’s a list … nothing – I mean nothing – has taught me more about myself, brought me closer to the people I love, or strengthened my faith in God more than being diagnosed with, undergoing treatment for, and surviving cancer. I could tell you a hundred stories about how God has blessed me, and used me to bless others, along my cancer journey. And, if you ask, I will.