Advice and helpful hints for women diagnosed with breast cancer from one who's been there, had that. I'm writing everything I wish I had known when I was diagnosed.
Showing posts with label cancer survivor. Show all posts
Showing posts with label cancer survivor. Show all posts
Saturday, July 11, 2015
Friday, July 13, 2012
Cancer is Scary - no matter what stage or age
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.
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.
Monday, June 11, 2012
Cancer Survivor - What's in a name?
Recently I've been thinking about the words we use about cancer and cancer patients. They're words of war: battle, fight, survivor. On the one hand, we read that so-and-so is a 10 year survivor. On the other, we read of those who lost their 5 year battle with cancer. We engage in a fight against cancer, and people refer to themselves as pink warriors. As though the next President will land on an aircraft carrier in the middle of a hospital (see the absurdity of the metaphor?) and declare victory.
A friend of mine and I were recently commiserating about the term survivor, in particular. First of all, the word makes it sound like the battle or hardship is over. That we survived - emphasis on the "ed." Neither of us feels as if it's over and done with. I don't believe anyone who has had any experience with cancer ever feels like its truly over.
The whole fight thing really bugs me too. As though the cancer really cared about my personality. If it did, it wouldn't have dared to take up residence in my body to begin with. I think the flip side of the battle cry is the subtle hint of blame if things don't go well. Like somehow, if you're not smiling through the pain, wearing lipstick to your mastectomy, flying to Switzerland to try some experimental drug and meditating six times a day, you're not doing enough to "fight" your cancer. Guess what? Cancer doesn't discriminate. It affects the mentally strong and weak alike. It doesn't care if I take a nap or run a decathlon today. It's a sneaky sucker that will take advantage of anything it can, and when we throw something at it one way, it will morph and hide until it finds another way in. It is many different diseases with one name - and they're all out to get you and me, the vegans and the yoga instructors, the country singers and celebrities, the poor, and the rich. That's just the ugly truth - so please don't tell me that dressing it up in pink and calling me a survivor or a warrior or a sister is going to make one bit of difference.
Of course, we have to find some way to feel powerful in the face of an adversity that is mostly out of our control. I just feel that we haven't quite figured out the perfect words yet. My friend says she feels more like a cancer victim than a survivor. I get that. Victims of a random act of violence. One that affects not just our bodies, but our families and friends as well.
Even Wikipedia recognizes that the term "survivor" is loaded: "The cultural ideal of a survivor may add to individual patients' distress if the patient is unable or unwilling to live up to the ideal. The ideal survivor is bravely committed to mainstream medicine and optimistic or even certain of a physical cure. He or she is open about diagnosis and treatment and becomes an educated, empowered medical consumer. The ideal survivor, like a superwoman who simultaneously manages her home, family, and career, struggles valiantly to prevent cancer from affecting loved ones by appearing, behaving, and working as much as possible. Once the immediate crisis is past, the person may feel strongly pressured to donate time, money, and energy to cancer-related organizations. Above all, the ideal survivor does not die of cancer. People who publicly conform to this ideal are given social status and respect."
That's a whole lot of pressure from two words. I mean, who doesn't want to be an "ideal survivor"? However, living up to that ideal, just like any other, is a losing proposition. So, I challenge everyone to find new words for us to use.
Here are my top 5 so far
1. Cancer Victim
2. Cancer Kicker
3. Cancer Endurer
4. Cancer Outlaster
5. Cancer Coper
A friend of mine and I were recently commiserating about the term survivor, in particular. First of all, the word makes it sound like the battle or hardship is over. That we survived - emphasis on the "ed." Neither of us feels as if it's over and done with. I don't believe anyone who has had any experience with cancer ever feels like its truly over.
The whole fight thing really bugs me too. As though the cancer really cared about my personality. If it did, it wouldn't have dared to take up residence in my body to begin with. I think the flip side of the battle cry is the subtle hint of blame if things don't go well. Like somehow, if you're not smiling through the pain, wearing lipstick to your mastectomy, flying to Switzerland to try some experimental drug and meditating six times a day, you're not doing enough to "fight" your cancer. Guess what? Cancer doesn't discriminate. It affects the mentally strong and weak alike. It doesn't care if I take a nap or run a decathlon today. It's a sneaky sucker that will take advantage of anything it can, and when we throw something at it one way, it will morph and hide until it finds another way in. It is many different diseases with one name - and they're all out to get you and me, the vegans and the yoga instructors, the country singers and celebrities, the poor, and the rich. That's just the ugly truth - so please don't tell me that dressing it up in pink and calling me a survivor or a warrior or a sister is going to make one bit of difference.
Of course, we have to find some way to feel powerful in the face of an adversity that is mostly out of our control. I just feel that we haven't quite figured out the perfect words yet. My friend says she feels more like a cancer victim than a survivor. I get that. Victims of a random act of violence. One that affects not just our bodies, but our families and friends as well.
Even Wikipedia recognizes that the term "survivor" is loaded: "The cultural ideal of a survivor may add to individual patients' distress if the patient is unable or unwilling to live up to the ideal. The ideal survivor is bravely committed to mainstream medicine and optimistic or even certain of a physical cure. He or she is open about diagnosis and treatment and becomes an educated, empowered medical consumer. The ideal survivor, like a superwoman who simultaneously manages her home, family, and career, struggles valiantly to prevent cancer from affecting loved ones by appearing, behaving, and working as much as possible. Once the immediate crisis is past, the person may feel strongly pressured to donate time, money, and energy to cancer-related organizations. Above all, the ideal survivor does not die of cancer. People who publicly conform to this ideal are given social status and respect."
That's a whole lot of pressure from two words. I mean, who doesn't want to be an "ideal survivor"? However, living up to that ideal, just like any other, is a losing proposition. So, I challenge everyone to find new words for us to use.
Here are my top 5 so far
1. Cancer Victim
2. Cancer Kicker
3. Cancer Endurer
4. Cancer Outlaster
5. Cancer Coper
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