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Have you ever wanted to read a cancer patient’s mind?

I have found a community of cancer patients on social media who are loving and supportive of each other. They are sometimes funny, or sassy, and always honest. They are a kaleidoscope of people, all different and beautiful.  This letter is made up of many pieces, or many people’s experiences, because I asked the cancer community what they want their loved ones to know, but may not voice out loud.

Dear friends and family,

Maybe you have known me all my life, or maybe we are newly acquainted. Maybe we live together, or maybe we spend our days together at work. I have something to tell you, well, a lot of things to tell you. So, settle in with a notepad and pen, you’re going to need it. 

I have cancer. Maybe this is a shock to you, but I have been silently going through some testing, and now that I have a diagnosis, I need you to know. 

I need you to know that I understand you care about me, and you don’t know what to say or do. Ask me, and I’ll tell you what would help me, because I may remember this moment and it can change our relationship. Some of you will become super supportive, and I may not hold back with you. You’ll get the cancer card, AND the whole deck!    

This letter is for all others, with love and respect, for insight. 

I need you to know that I’m scared, and hearing stories about other people you know, with the same cancer, or about how I’m young and treatments have improved, is not helpful. 

There may not be a logical reason for my cancer, and asking the cause can assign blame. I didn’t eat the wrong thing, drink too much, stress too much, this is not my fault.

As I go through more testing, telling me to be positive doesn’t make the anxiety, or scanxiety, better. This is hard, and I’m going to have some ups and downs.

I may have surgery to remove cancer, but there is so much more ahead that neither of us can anticipate. After surgery, my cancer is gone for now, and it could still come back. I may be unwell but I can still make my own decisions…don’t feel you need to make them for me. Please don’t tell me to fight, of course I want to live, but I’m not a cancer victim fighting a battle. Words are powerful and I’m just getting through each day the best I can. 

Treatment is long, and hard. Try not to look at me with pity. I’m still a normal human and have normal feelings. My body feels like it weighs 5,000 pounds after a round of chemo and that’s why I’m in bed for days. I literally can’t get out of bed. Please don’t be afraid to tell me about your everyday life. I NEED to hear what is happening with those I love, and want to think about the everyday problems for a while. Yes, hearing about your child’s tantrums or your husband snoring is welcome relief from cancer!

I find out that the long term side effects of treatment are ongoing , some of them forever. Life does not always return to normal for cancer patients after treatment. It can be a life sentence and there may be a time when I don’t feel like I fit into my old life anymore, like I will never be the person I was before my diagnosis. At the same time, I can feel like the same me, but forever changed. You know, We really are all new people — all human cells turn over through the course of a 7-10 year period. With chemo, I killed off more cells faster, so I’m really a whole new me! Reborn with a complete absence of peace of mind and a new and extremely dark sense of humor amongst other things. 

Losing my hair during treatment, I get it, but when it grows back lush, and gets taken away again because I’m taking meds to stay alive, that makes me sad. Don’t try to convince me it looks fine. I see it. These same meds, they can cause pain. It’s the kind of pain you feel in your bones, which then makes you wonder if the cancer is back. The cancer has changed me physically, and I may not be able to do the things I used to be able to do. I hate that you can see how exhausted I am, even when I try to hide it.

My dear friends and family, please listen, no matter what, celebrate, when I’m doing well, and comfort me when I’m not. Just continue to support me beyond active treatment. There may be times when I may hold some stuff back, because it’s less awkward, or so that your memories of me are not the chronic pain. Or maybe I’m going through more testing again, and I don’t want you to worry, but you can always ask questions…I’m open to that.

Cancer may have shaped me, but it will not define me.

To the ones at the center of my heart, my children, I don’t think it’s fair for you to have to live in a world without your mother. I can’t guarantee I can look down on you and protect you, but if I can, I absolutely will. 

Thank you, friends and family, for looking through the glass of the kaleidoscope and watching over us, where there is light and dark and pieces that don’t fit together, until you make another turn.

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