Melinda: “Please don’t cry in front of me. Then I will ugly cry, and it will be a mess.”
It’s a touchy thing being a caregiver. When to step in. When to drop back.
Susan: “There will be waves of emotions. I’m crazy, but I’m not actually crazy.”
The sixty-four people who participated in The Five Minute Blog at this year’sCancerCon, brought to you by the fabulous Stupid Cancer tribe, taught us a lot about what goes through the mind of a cancer patient. While we discovered what patients wish they knew and what knowledge they had learned, by far the most loaded question was the last one we asked:
What do you wish your caregivers knew?
Lisa: “That I don’t need you to tell me what to do. I don’t need you to come up with ways to fix me. I just need you to be there to support me.”
Philomina: “I can make my own decisions.”
Allison: “I don’t need advice, I don’t need a lecture. Please just listen.”
Catherine: “It’s ok for me to cry, and I don’t have to always keep the happy face on.”
Because if we’re being honest, cancer is never fair, even if… and sometimesespecially if… you’re the caregiver or loved one. Your friend, your sister, your uncle, is in the throws of this disease. You want to make them feel better, but you don’t know how. So you start with the basics…
Melissa: “Stop asking me, ‘How are you feeling?’”
Korinne: “Stop asking me if I’m ok.”
Asia: “Every time they asked me how I was doing, it made me feel like less of a person and just a diagnosis.”
Well, that didn’t work. So you think maybe being silent is possibly the better way to go. And for some people, that’s okay.
Hailey: “I shut myself out, I really wanted to keep things super private because I knew the reaction would be, ‘Oh, you’re dying.’”
Emily: “I didn’t feel like talking, so I acted like everything was fine.”
But for others, silence becomes even more isolating.
Lori: “My family didn’t know how to treat me, so they distanced themselves. They didn’t know what to say.”
It’s almost impossible to know what to say, at least initially. And let’s face it: this isn’t an instance where you fake it ‘til you make it. Most humans are really shitty at hiding what they’re thinking.
Peter: “My son was 5 when I was in treatment. He was scared to death of me, so I would tell him not to be afraid of me. I’m not going to hurt you.”
Angie: “I’m still a human being, I’m still alive.”
Sarah: “I might look like I’m sick, but I’m still me.”
I knew that whenever I hung out with my friends, quite a few would look at me like I was sick. And while I didn’t like it, I couldn’t really blame them. I saw it as the inherent goodness in the people who cared about me. The hard part was seeing the discomfort in their faces, so I did what I could to lessen the blow.
Amanda: “I took the brunt of everything so that they wouldn’t be upset.”
Megan: “I told them I’m going to be fine. And it was my belief that I was going to be fine that got me through.”
However, this had a tendency to exhaust me; sometimes it’s hard to be strong when you feel so weak.
Chad: “There are so many people who look to you to be the superhero, and I’m not trying for superhero status.”
And eventually, I just stopped caring what others thought. I knew I looked like hell, mixed with sewage… plus a touch of Uncle Fester. If I saw me in the checkout line, I wouldn’t know what to say either. I became fairly good at being who I was in what I felt like at any given time, which tended to fluctuate from day to day. And realizing that, I became much more understanding of how others treated me. The one thing I could never tolerate, though…
Christopher: “And you don’t need to speak to me in a soft voice.”
Vanessa: “Don’t treat me like I’m going to break. I’m not different.”
Drew, a Caregiver: “And don’t give me a pity party. I will make the best out of every day.”
Christal: “Coming at it from a place of pity is not appreciated… don’t infantilize them.”
Destiny: “Just treat me as normally as you would before I got sick.”
Sierra: “Ask questions. Ask ask ask. Ask, instead of assume.”
Juliana: “Whatever happens, happens. It’s going to be okay.”
Diane: “And it’s okay to cry and be scared, and it’s okay to laugh.”
In fact, it’s more than okay to laugh… it’s essential. One of my best friends, upon seeing me bald for the first time, said…
Christopher: “You know, you kinda look like the tip of my dick.”
No, I’m not kidding. Of course, you really have to know the person well. Otherwise…
Holly: “I’ll make jokes about cancer. Then I’ll be mad at you for making jokes about cancer.”
And if it’s possible, it’s important to shake up your daily visual.
Cat: “Don’t be afraid to reach out to me.”
Kalina: “While I might be sick, it doesn’t mean I don’t like to have fun.”
Just a word of caution about Tequila, however… and that’s all I’m going to say about that.
Liz: “I needed my mommy group to just hang out and be normal. Many didn’t know what to do.”
And many still don’t know what to do. Because no matter how much we try to shield our friends, the truth always breaks through the barrier.
Alison: “You realize how many people are affected by this disease.”
Todd: “It’s not just me going through this. It’s all of us.”
Eden: “Your caregiver might as well have cancer too; they are helpless.”
Jen: “Just be there, all you need to do is be there and have an open ear.”
Alyssa: “I want you talk to me about your life. I’m not the center of the universe.”
Ali: “Life isn’t just about me. And DO NOT COMPARE. Everything is relative.”
Another pitfall. It’s irksome to hear from a friend or loved one, “Here I am talking about my problems, when they’re nothing compared to yours.”
Seriously. Stop it. Right now.
Emily: “Hearing other peoples’ problems makes me realize that I’m not the only one in a sucky situation. Relationships should be about sharing.”
They should be about sharing, but sometimes we as patients are not good at sharing… especially when it comes to the mundane day-to-day responsibilities that can become an enormous challenge during treatment.
Johanna: “I didn’t want anyone to feel obligated to help. I wish I had known how to ask for help and mean it.”
I was living at my parents’ house while I had cancer. Each and every day, my mom would offer to do things for me, and I would always say, “No, thanks. I’ve got it.” My thought was that I didn’t want to be a burden. What I learned, however, was that my mother already bore the burden in her heart of her son being sick. Allowing her to do things for me would have given her a higher sense of purpose… a stake in the fight… a softening of the burden she already had.
As patients, we need to remember that. Most people don’t offer to help if they really don’t want to help. We need to have the courage to say “yes” when our immediate reaction is to say “no.”
Now for caregivers, we have a million things going on in our head. If you ask us what we need at any given moment, we are clueless. With that in mind…
Victoria: “Don’t ask me what you can do to help. Just start doing them. If dishes are in the sink, just do them.”
Brandie: “If someone just showed up and cooked dinner, it would have been huge.”
But if you have to… tough love this shit.
Jennifer: “I’m too stubborn to ask for help, so force me to tell you what I need.”
So now that all of your heads are potentially swimming, and confusion has thoroughly set in, many of you have the same question: “What the %*#! do I say or do?”
Sadly, there is no tried and true answer. But there is a good first step:
Rachel: “Take your cues from the person in treatment.”
Jessica: “If I’m laughing, laugh with me. I don’t always have one foot in the grave.”
Niki: “Even though you may not understand what I’m going through, you don’t have to know exactly to support me.”
And to our caregivers and loved ones, we might not always show it, but never… ever… think that what you do is unimportant, or that we don’t realize all you have done, and continue to do for us. You are one of the biggest reasons why many of us are still here to answer these questions.
Julie: “I appreciate them for being there and being patient with me and not holding that against me.”
Kaitlyn: “I thank them for their unconditional love.”
Joy: “I couldn’t imagine doing this without them.”
Kim: “To my mom… thank you for stopping your life to take care of me.”
Betsy: “I was angry, and not able to express my gratitude.”
Karissa: “It’s hard to be around a sick person. But I would be lost without you.”
Rachel: “I love you and I value you.”
Brittany: “Thank you for all the little things that I never seemed to appreciate, but it really meant a lot.”
Casey: “Thanks for coming with me on this adventure. Lets not do this again.”
Until next year…