I recently spoke with a woman who told me she had been unsure about contacting me because she wondered whether her own experience with breast cancer was bad enough to warrant reaching out. She felt guilty about coming to me because she felt that she hadn't suffered enough compared to what I had gone through. I felt sad hearing her describe how her age (over 50) and her treatment (lumpectomy and radiation) made it seem like she should be having an easier time or feeling lucky that she hadn't needed anything "worse". As though a lumpectomy and radiation are a piece of cake. HAH. Only if the cake is filled with burns and fatigue that makes you feel like you're wearing a lead suit and the icing reads: This may be your last birthday. Pretty messed up cake.
Where do we get these feelings? Sure, it could be worse. Does that mean we're lucky if it's not? Is any cancer victim supposed to feel lucky that their diagnosis isn't worse? These are things that well people say to us because of their own fear. It's their own need to rationalize and make it all ok. I actually had a "friend" tell me I was lucky I was bald because now I didn't have to deal with washing and styling my hair all the time. Are you kidding me?
Regardless of your diagnosis, age or treatment plan - cancer is terrifying. Period. You're dealing with something that isn't very well understood, and leaves you with great uncertainty about the rest of your life. All cancer treatments are debilitating in many ways. We read about mastectomy and chemotherapy and we accept those as being particularly awful to deal with, but that doesn't mean that other treatments are easy. No way. Lumpectomy is surgery. Surgery that changes a part of what makes you look like a woman. It doesn't matter how old you are or how good the reconstruction, or how small the scar - still life-altering stuff. Radiation knocks you down, no matter who you are or how well your skin heals. You have to go every single day except during the weekend and walk into that room. The password to get into my club is cancer. That's all.
Sure, you have to find ways to get through the day without feeling sorry for yourself. Sure, you have to remind yourself of the positives, blah blah blah, but some days just suck and there's no way around it. Some days you just have to give yourself permission to whine and feel sorry for yourself, regardless of how other people expect you to act.
Top 5
1. When you feel the need to whine, accept it. Don't judge yourself. You're going through hell and if your friends or family don't get it or are tired of hearing it, find a support group or email me.
2. Set a time limit for wallowing. Don't let it overwhelm you. Though it's important to express those feelings, it's not helpful to let them take over. I will say to my husband sometimes, "Can I just whine for 10 minutes?" Then I go through all the crappy things I feel. All the pains (big and small), fears and whatever else is going on. His job is to just listen and then say something like. "Oh honey, that sounds awful." No offering advice. No tips on how to change my mood or fix anything. Just empathy.
3. Reach out to someone who can understand. Sometimes it really does have to be another cancer victim. Your regular friends and family may not be able to hear you during those moments because they hate to hear that you're suffering. They love you and want it to be okay. They need it to be okay and when it's not - its freaking scary for them.
4. Have a response ready for times when people say something stupid like, "You're lucky." Even if you don't say it out loud. How about, "I guess I feel somewhat relieved that I don't have to...." Of course, what you really want to say is, "I don't think anyone who has cancer feels lucky, you idiot." That probably won't go over too well, though.
5. Understand that the people who know and love you are scared and sometimes overwhelmed too. Maybe tell them what you need from them - including sharing that it's really hard to feel like you're not allowed to have a bad day. It's too much pressure to feel like you're supposed to go through treatment and put on lipstick and a happy face all the time. It feels lonely to have to put on a cheerful face for the world when sometimes you just need to get under the covers and cry a little.