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October 15th, 2010
08:48 AM ET
Breast cancer: EtiquetteThis week Amanda Enayati will share the milestones of a life-altering journey that began the day she learned she had late-stage breast cancer more than three years ago. Today let’s discuss cancer etiquette. I would call it serious illness etiquette but I thought I would specialize since cancer is what I know and, who knows, maybe the rules are different from disease to disease. (And yes, every one of the following has happened to me at some point.) Finding out someone has cancer is awful. It is a cruel disease, which will strike one out of every two Americans. Hearing the bad news is shocking and devastating but it’s probably more shocking and devastating for the cancer victim than it is for you. So pull yourself together. You can be authentic, show a little emotion, maybe even shed a tear but for the love of God don’t make it about you and certainly don’t put the cancer patient in the position of having to console you as you sob, beat your chest and yell “Why? Why, God?’ up at the heavens. Rein yourself in for a minute or two, and let the sick person set the tone. Maybe she wants you to hold her hand and cry with her. Maybe she just wants you to sit and listen. Or maybe she wants you to list the 101 reasons she will survive. Her call. Not yours. If you don’t know what to say, don’t worry. Any variation of “I’m really sorry,” “I love you,” “My prayers/thoughts are with you” is perfectly okay. If you find out someone has cancer from someone else, do not call her, burst into tears and sob: “Why do all the good ones have to die?” Yes, it’s true that all the good ones have to die. But all the bad ones have to die too. We all die sometime. Besides, it’s probably not okay to pronounce a living person, who is sitting there on the other end of the phone line, dead from something that they are more than likely hoping to beat (even if they don’t admit it). Which leads me to my next point, and that is that the cancer patient may or may not die from that particular cancer. There are lots of folks who survive cancer—both early and late-stage—and never have a recurrence, even when the doctors anticipated a high probability that they would. I have read accounts of people who were given weeks and days to live—people who are still living decades later. Recovery is a function of many things and one of them is grace, something that none of us can ever begin to predict or quantify. Next rule: Don’t look up the odds. Don’t point out the odds. Don’t confirm the cancer patient’s worst nightmares. What’s that? You’re just being “realistic?” Well, shove the realism up your unmentionable bits and keep it there. Don’t give anyone struggling with cancer a moniker that contains the word ‘cancer’ in it. Someone I love kept calling me Cancer Girl, like I was a superhero or something. Even in the throes of dealing with it, I didn’t want to hear the word cancer, much less have it associated with me as a nickname, and so I wanted to punch him in the nethers each and every single time he uttered the words. (But I didn’t. I didn’t say a word. I am now, though. Don’t do it.) Say you’re an acquaintance of someone who’s dealing with cancer, make sure that every time you run into her, your face doesn’t crumple into a look of sorrow, your eyebrows knit together over a pair of puppy-dog eyes as you whine: “How are youuuuu?” in a soap opera voice. She probably was fine until the moment she laid eyes on you and now you’ve ruined the rest of her day with your faux pity. On the other hand, when the patient is going through treatment, don’t ever tell her she looks bald, skinny, bloated, ashy, gray, red, sickly, even if it’s true. Lie if you need to. Tell her that she’s glowing, beautiful, vibrant, alive. (All of these rules apply to both men and women, by the way.) One day when I was in the middle of chemo, my daughter’s nursery school teacher said to me: “Aren’t you supposed to be looking worse during chemo? How do you get more beautiful every day?” I swear I wanted to leave my husband right then and there, and marry this woman. I will adore her for life, not because of some compliment that more than likely wasn’t true, but because of her generosity of spirit and the gift of hope that she gave me through a few simple words uttered with pure intentions. Listen. This is particularly important. When the person is in remission, say, one or two years out from treatment, hell, even six months out from treatment, don’t keep bringing up cancer every time you see them. Say you happen to run into the person in a social situation where everyone’s talking about the weather or politics or those crazy celebrities and their nutty antics, please please please don’t say anything like: Your skin looks SO great, not like all the other times I’ve seen you when you looked so sick and kind of yellow, you know? Maybe even almost green. Like you weren’t doing so well. But now your skin looks like a healthy person’s skin. Even your hair. Hey, how often do you go to the oncologist? When is your next appointment? How are you feeeeeling?” Because I promise you the person, no matter how polite she’s being, isn’t taking it well. If she wanted to bring it up, she would have. Because, with a few exceptions we can discuss at some point, she has either already moved on or is trying to move on. She’s hoping to forget the horrors she endured. She doesn’t want to relive it. She certainly doesn’t want to be reminded of it in a social situation. And so more than likely, she wants to take your smug little face and do violent things to it. Even if her face is a perfectly arranged mask of social civility. Any questions? Amanda Enayati’s work has appeared in Salon, the Washington Post, Detroit News, and "Let Me Tell You Where I’ve Been: New Writing by Women of the Iranian Diaspora" (University of Arkansas Press). You can follow her on Twitter @AmandaEnayati or her daily blog, practicalmagicforbeginners.com. soundoff (1,613 Responses)« Previous 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 32 Next »Post a comment
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Another thing? Don't completely disappear when someone is diagnosed. I am a survivor, as well as my little girl, who was diagnosed at 4. I can't tell you how many friends and family members disappeared into the woodwork. Even if it makes you uncomfortable, let them know you are thinking of them, whether it's a meal, a book to read while doing chemo, a blanket for those chilly hospital stays, etc. You don't have to hold the bowl while they puke, but don't ditch them just because the whole thing makes you nervous.
Thank you so much for this article!!! My best friend was just diagnosed with cancer and honestly I am at a loss as to how to act around her now. Do I carry on like nothing's wrong? Do I acknowledge it? How often? How in depth? Can I cry around her? Only if she cries? Do I tell other people? Aaaaaahhh!!! So many questions and I had no one to ask. Your article put so many things in perspective and gave me, at the very least, a starting point on how to handle this. And the comments from others have given me great insight as well. Thank you all!
Thank you for posting this. I have had cancer twice. I can't stand the reactions I get when I say it. I am a normal human being living with cancer. Treat me just like everyone else! Thank you again.
Wonderful article and right on. I'm a nine-year survivor and the person I remember most was a store clerk who said to me "You look beautiful and healthy". I don't think I did, but it meant the world to me and I carried that through the rest of my treatment. My friends wanted to help so I asked them to plan outings for me and I went on many walks, to movies, and parties throughout the 6 months of treatment. I then planned an re-birthday party on my first birthday after treatment and invited everyone who had provided support. It was a very healing experience. I'd recommend it highly.
Well written and refreshing article. I saved it, thank you.
There is something else I would like to add. I understand that this article is about breast cancer. My mother had a mastectomy and could never look at the scar. Six months after she died, I had surgery for ovarian and endometrial cancer. I had a huge lower abdominal scar full of staples, and a gut that felt like hamburger, but there were no outward signs that I had lost part of my womanhood. Surgery is obvious on the outside, when you lose a visible part of your body, but sometimes the trauma is internal and just as traumatizing and debilitating.
And some people just don't let go and constantly are doing and saying things to remind the cancer patient that they have had cancer. Survivors become defined by their disease.
Oh yes! Had to have a squamous cell carcinoma removed rather quickly – basically, the dermatologist gave me the option of having it done in the office right when he gave me the diagnosis, and I told him absolutely, cut it and with enough margin that you get all of it. He did so, sewed me up with quite a few stitches, and I went into the waiting room where my friend burst into tears at seeing the bandage, ran over and GRABBED ME BY THE ARM THAT HAD JUST BEEN CUT and bawled like a lunatic. I wonder if it was about me, or all about her. Anyway, the nurse made her let go, the doc fixed the stitch she broke, and she doesn't come with me to the doctor's office any more.
As Bugs Bunny would say, what a maroon! Spare anyone with cancer your dramatics, they're dealing with enough drama without your help!
All I can say to that is OMG! That is exactly why I didn't let anyone go with me when I had my biopsy or when I went to get the results. I needed to deal with it myself before I had to watch other people deal with it.
i know this is a year after you posted, but "Spare anyone with cancer your dramatics, they're dealing with enough drama without your help!" is so very perfectly said! may i copy and post this to my Facebook wall, so that I can passively-agressively hit the point home to a few people?
and kudos to you for demanding surgery on the spot – I hope you are uber healthy and happy!
I am just past my chemo for lymphoma. Fortunately my prognosis is fairly good. I'd like to add please, don't say, at least you have the "good' cancer. I realize there are many, many scenarios that are worse than mine. However, there is NO good cancer. Everyone's individual physiology is different. You don't know what the real diagnosis is or what the individual is really going through. My treatment took many twists and turns beyond the original plan. Also, I was fortunate not to lose a breast. I am thankful. But, that doesn't stop the assessing stares as to what I still have and what I do not. So,Please spare all of us the assessing stares for body parts. Please! Thanks for adding the one about how good my skin looks. I get this one alot. I usually wear make up , right now I cannot. I am not sure what I believe when I hear those comments. How about lets take a walk ,no cancer talk.
I agree with absolutely every point you made! I'm a 3x cancer survivor (2 breast). The only point missing is when someone wants to tell you how a relative or friend had the exact same kind of cancer and didn't do so well. And then share horror stories from there experiences.
And, never, ever, say to someone with cancer or any other kind of medical or emotional trauma, "I know how you feel." No one knows how I feel even if they've gone through the same sort of cancer. I found it especially insulting when folks said that to me when my father was diagnosed with Alzheimer's. Personalities, family dynamics, other current stressors, support or lack of, are just a few variables that make each persons experience unique.
12 years ago, I was diagnosed with Breast Cancer....went through chemo, double mastectomy, and reconstruction.
I appreciate your article!
I often wonder why people stare at the breasts of a cancer survivor, when they are talking to them???
Susan, I have noticed that as well, that they stare at mine. I think it's the people that don't really know what kind of treatment I had and they are looking to see if there is something missing. I had a lumpectomy and it's not noticeable (thank goodness). A friend of mine though had a double mastectomy and her first day back to work she came by my desk and was wearing a t-shirt that said "Save the ta-ta's". I looked at her shirt and we both started laughing. I said "A little late for that isn't it?" It was priceless 🙂
Thanks. As you noted, this doesn't just apply to Breast Cancer. A lot of these things fit me too. I'm struggling with an auto-immune disorder and a bunch of related problems, and while I write about it openly and honestly online, I generally don't want to talk about it in person.
On the one night a week (if I'm feeling well) I make it out of the house to spend time with friends or dance or otherwise have fun, I do not want to spend the evening answering questions about my health. I'm out because I want to have some fun, and feel like "me" for a few hours before I go home to struggle with the broken again.
May I add one, please? When I was going through treatment 2 years ago, people kept telling me I was so "brave". I hated hearing that! I wasn't brave, I was scared silly, and barely making it through each day. Of course I did what I had to do...what choice is there, really? But I was not brave, and, although meant as a kindness when said to me, it really only served to remind me of what a chicken I was being.
Now, as I face another biopsy in a few days, I AM being brave. I have been through it once and can do it again, if need be. (Again, I have few choices). I still don't particularly want to hear it, though. Heh.
As for questions, my middle school students have been the best. They are open, and I answer just as openly. Their questions come from genuine caring and curiosity, and they never give me the fake "you look so good" junk. They are so real! We could all take a lesson from kids. 🙂
I am a 8 yr breast cancer survivor. when I was told I had cancer, my first reaction was that I am going to die. after 2 hours of crying, I got mad, this was not going to beat me, I am going to beat it, and I did. When I told my only sister that I had cancer, her response was 'I can't handle that', and didn't. So I applaud all those out there that became a support system for their friends and family fighting this battle.
I agree with most of what this article says, but one part is divergent from my experience. I am three years out from my diagnosis and treatments and I find that the people who proclaimed "I'm here for you" never bother to ask if I'm okay. I felt utterly alone in dealing with the repercussions of the dissect. Like since the exciting part was over and I looked normal again people just forgot it even happened.
My point is that asking a friend how they're doing years later is not a bad thing. Support for the cancer survivor should go well beyond the initial insanity and into the years that follow.
"Normal" on the outside does not mean that all is healed.
Six years ago when I was diagnosed, i ended up telling all my friends that I didn't need their tears. I had enough tears of my own. I needed positive and pragmatic; anything to actually assist as I put my head down and plowed through the nearly year of treatment. I have a number of friends spread all over the country. I also told them that they couldn't call to check on me unless they brought a story/update of what was going on with them first. I couldn't be all about cancer. Since finishing treatment, the one thing I've told any other friend as they've gotten the diagnosis is that it's not their job to take care of others now – it's their job to focus on themselves and get through it. (Unless they have children in the house; that responsibility never goes away.) And like someone mentioned above, I then privately pray that God give them strength and grace to sustain them through the journey, no matter what the outcome.
Incredible how people with cancer have the wear-with-all to tell the rest of us how to respond to them. Keep the focus on getting well, staying positive, and surviving cancer rather than dictating how the world should be responding to you. Who cares what others think or say? Who cares how anyone responds to your disease?
Some people do care. Some people want to help, and want to know how they should respond. Whereas I do not agree with the "don't cry" bit, because that's rather broad, and if they care, they're going to cry, every person has their own personal likes and dislikes as to how others respond, and as I said, SOME people want to know. Many, in fact.
But, this is why I never wore the cancer "scarf" out in public. I had a fabulous wig that was very close to my own style, and literally, no one knew I was going thru chemo unless I told them. This was mostly because I did not want strangers walking up to me and telling me how their Aunt Edna died a horrible death from cancer, or how their dad suffered for years, etc. I had enough experiences with strangers volunteering that their labor was 33 hours, or some such, when I was pregnant. I know what happens, and preferred to keep it private.
Because people's reactions affect the patient's mood.
BTW, it's "wherewithal."
Review
I would add, don't make ANY sort of pronouncements as to their prognosis. "Breast cancer" is used for a huge range of disease whose only relation is that they all occur in the breast, and some are nearly 100% curable, and some are incurable. People were good with me about not telling me I was going to die, it was just the opposite. I had one woman say dismissively, when she found out what kind of cancer I had, "Oh, breast cancer! NO one dies of THAT anymore!" Another person had been talking about her friend that died of lymphoma, and asked me what sort of cancer I had. Again, once the type was revealed, the response was, "Oh, well. Hers was a SERIOUS cancer." I certainly don't want to downplay how serious her cancer was, but I'm stage three, 9 out of 10 nodes positive, and so it was annoying to have the seriousness of my situation completely dismissed by people who had No Idea.
These days, I have a hard time when people ask me about my cancer. I'm currently cancer free...but I know that it's highly likely it will be back, and that there's no expiration date on my risk. In fact, my risk goes up every year. So, they go away all happy because, with most cancers, the longer you go without a recurrence, the closer you are to being home free. I am not going to "explain" things to them, but between that and the various side effects that go along with breast cancer treatment, I hate saying "fine". It's not "fine", it'll never be "fine". It sucks. But people want me to be "fine". They don't really want to hear about anything less than a victorious cancer survivor. For myself, I would really like people to know what surviving costs a breast cancer patient. And, I want researchers to find a way to stop the cancer without ruining the quality of my life!!
Thank You! The love of my life has lived through cancer for 22 years, and is going strong.....she just completed bone marrow transplant.....and is doing great!!
My sister and I are both fighting this terrible disease and appreciate any thoughts to make the journey easier for ourselves and others. My sister called today and said a friend (?) had called and asked if she could come over for a visit. My sister said fine but please understand I'm in a bit of a crisis with the garbage. Instead of offering help she said she would come over another time. For families and friends understand sometimes the most thoughtful thing would be to take out the garbage.
I will never forget, when I was a kid and my mother had breast cancer, some moron from our church told her she looked pale. From that day forth, my mother wore way too much makeup. Never ever ever say that to a cancer patient. Ever.
willow, did the person know that your mom had cancer?
I remember after my aunt passed a friend of hers mentioned how she had previously commented on my aunt's weight loss in passing. She had told my aunt "wow you really lost weight! what are you doing?" the two were in an association together, and my aunt had never mentioned her diagnosis. At the association meetings, it was very common for the women to discuss weight, so the friend naturally thought she was giving a compliment.
I agree with the suggestions given in the article, but there was another important lesson to be learned by cancer patients.
Speak up.
If someone is doing something that is bothering you, like calling you "Cancer Girl", ask them to stop. You have every right to be annoyed, but you might feel better if you just addressed the behavior. Just a thought.
Phenomenal photo! The absolute essence of LIFE!! Thanks for a wonderful blog and helpful insight!
Thanks for the post. I do believe I had most of the crazy things said to me by my family. Some came over with the "you are so dead" look on their face, others cried and said I had lived a pretty long life, etc. Not the kind of stuff you want to deal with going through the nightmare of treatments.
I liked the post. I might even print it off and let family and friends read it. I've recently been diagnosed with DCIS, stage 0 breast cancer. The surgeon told me that the success rate is almost 100%. I am having a lumpectomy next week and then I will have to get radiation treatments. Some people haven't said anything to me yet because I guess they just don't know what to say. But I have great friends and family that have been supportive. I haven't told a lot of my co-workers because I'm afraid everyone will tell me about someone they know who has had breast cancer. I think people need to realize that no two people are the same and neither are their cancer and cancer treatments. I like it when people just listen to me talk about my cancer or when I don't feel like talking about it and I change the subject. Please support those who have cancer and be a friend. You don't have to remind them of it everyday, just be there and be understanding.
Everyone reacts differently when told that their friend/family member has cancer. It could be awkward for the other person and what flies out of their mouths is usually something they'll kick themselves for saying later. Having cancer myself, I'm annoyed when someone says something too nice and then something too insensitive. There's no pleasing me I guess, lol! My in-laws openly cried – didn't look like something they could control. My mom I told over the phone so I wouldn't have to see her reaction. But regardless of how anyone reacts or what anyone says about the cancer or how you look, it is what it is – a screwed up situation about which, hopefully, YOUR attitude counts the most.
too intense – too much for me to read through
Cancer is a illness. With today's medical care, it is a illness that can be defeated – not a automatic death sentence. Don't treat it as a automatic death sentence. Be supportive, be helpful, be a friend.
With today's medical care and some luck one can beat it....I did as a 14 year C survivor.
We treat illness and death in the country as such a taboo thing now.....its a shame...we cant even talk about it with-out making others feel ill-at ease. It can happen to ANYBODY, and all of us, each one of you reading this article will eventually know someone, or yourself have some serious illness affect you, it be a spouse, family member, friend, yourself....it shouldnt be treated as such a taboo subject, as many do.....
The comments I hated hearing the most were the ones that had to do with "it must have been my own fault." Did I use anti-antiperspirant? Plastic wrap? Eat meat?
in judaism, it is taught that when a loved on dies, and you are sitting shiva, you are silent and wait for the mourner to speak so you don't interrupt their thoughts during their time of grief.
i think cancer etiquette is kind of the same. go with the flow of the person with cancer and wait to make a comment.
I would add that people who are undergoing cancer, particularly if they do not have a strong support system in place, need help with lots of mundane things to make recovery more likely. Here are my suggestions, from my personal experience going through treatment for an early stage breast cancer while raising a child alone in a place far from family and old friends:
1) Do not shower advice on the patient. You are not an expert on her needs, even if your friend/cousin/coworker had cancer.
2) Do not spread the word. It's her business who knows.
3) Do not start to do things for her without checking with her about her needs and wishes. Your tuna noodle casserole and marshmallow/jello salad may be unappetizing for her and now she has the stress of tossing it and saying it was delicious.
4) Don't press her for details unless you are her very best friend, sister, mother, etc. She'll tell you what she wants to tell you. This is especially true if you are merely an acquaintance or if you are a coworker.
5) Do ask her, "What can I do to help? Tell me anything, no matter how mundane or difficult, and I'll see what I can do. Don't be afraid. I mean it." Then, repeat that offer till she believes it, but don't harass her with it. Pay attention to her cues.
6) Ask her if specific mundane chores can be something you handle for her during her treatment. Examples could include yardwork, housework, grocery shopping (with HER list), laundry (the way SHE does it), meal delivery, errands, childcare, etc. Please understand that only she knows what she needs. So, don't press her to let you take care of her kids when what she really needs is someone to take care of her home so she has time and energy to be with her precious children. But, do offer to take the kids to the park or the theater so that she knows they are getting some fun distraction and can rest. It's up to her though.
7) If she accepts help, do things HER way. If you wash her dry clean only wool work pants, it's not helpful. If you rearrange her kitchen, it's not helpful. Cook the food she likes, not what you think she should eat or what you prefer. Remember, you're lightening her load, not remaking her life.
8) Consider giving her a list of things you can do for her and let her pick from among them. This could include things like taking library books back and picking up new, getting a birthday cake for your daughter from the bakery or even making it using her child's favorite recipe, taking her wig shopping, walking with her in the park to help her retain her conditioning even though she's tired (with you pushing the stroller and driving), or planting a lovely flower and herb garden for her to enjoy–and weeding and harvesting regularly for her if she wishes.
Remember, it's not time for you to be a superhero or take over. If you can truly serve, come in humbly and do what she needs and wants (according to her), you will truly be supporting her. It's not about you.
No matter what, though, don't abandon your friend, and don't start pressuring her to make treatment choices or life choices that you think are best. All my friends abandoned me, and I could barely care for my child. We had no Christmas because I was too poor and weak. And, a neighbor came to the ER uninvited and while I was laying there attached to an IV started pressuring me to change hospitals because that's what they made her mother-in-law do. She wouldn't let up, and I didn't even know her. Remember, you're not the boss just because she's vulnerable. Be a humble servant if you truly want to help.
I was wondering whether these frustrations are felt about all the pink "stuff" around all the time. I have known people who have been through this who absolutely hate not only the assumption that their new favorite color is pink (makes us more feminine? more weak? prettier like little girls and so more worth your help?) but also the fact that it is everywhere, in your face, especially during October. In my town, one shop window has covered the glass in hospital gowns and pink ribbons. Really? Is that what women want to be thinking about? Curious what the author and others think–
I am fine with all the pink. It's just a method of getting people to notice, and it reminds people that this is an important thing for everyone to be supportive of. It doesn't mean that breast cancer patients have to wear pink or have it around their home. Don't give them pink things because they have breast cancer. Just support the cause to find cures and remind others that it's important and affects everyone somehow. I am a survivor and don't own anything that is that baby pink at all. I don't wear a pink ribbon because I don't want the label to brand me. But, in the right circumstance, I definitely support the cause and promote education, prevention, and support for patients.
I would also add that a major burden that cancer patients face is all the paperwork and documentation. It's an overwhelming job to take care of while also working fulltime and caring for a home and a child, as I was. If you are good with administrative duties, please offer to assist with this, opening mail of this type, organizing it, going over it with the patient, comparing it to insurance coverage, etc. you must be thoroughly confidential if you do this, and you must not take over or demand your own way. Even if you think her choices are not the best, it's her choice. You must be willing to be the servant if you truly want to help. Relieving stress can support healing, but creating conflict or underlying stress if she doesn't speak up, makes recovery less likely.
Another way you can help is with clothing. Help her keep up her look if she wants your help. For example, if she loses her hair, be ready to help her find wigs, hats, and scarves. If her weight changes, help her get the clothing she needs. If she needs a prosthesis to look balanced, offer to drive her for a fitting when she is ready and help her get the bras she needs for this to work. Swimsuits as well can be a problem, especially for a younger woman who does not want to wear the older lady styles often available for masectomy patients. Be creative. I went five years without swimming because I couldn't find a good solution. I finally got a snug fitting vintage looking suit and sewed lingerie fabric in one cup to hold my prosthesis.
Another help may be to care for children to keep their life normal while she is away for treatment. My son missed a major party because I was too weak to take him to it. He stayed with a school counselor when I was out of town, only later telling me it was frightening, not because of their home, but because he was away from home. Normally, being away would not bother him, but he was afraid he would never get to go home. He said much later that he would have felt better if someone would have stayed with him in our home. That may take sacrifice, but it's something that could help tremendously, particularly if there are pets. Keep the child in familiar surroundings with his or her pets and own bed if possible.
I would add for any health care providers who may be reading this, don't let your interns close the wound on a breast. Your patient wants the cleanest, straightest, least ugly scar she can get. Letting your intern practice on closing a breast wound adds lifelong pain to your patient if it's not done expertly, and in that case it usually isn't. In addition, don't pressure your patient to accept the type of reconstruction that your clinic can easily do. It's her breast, not yours. You may not think a 20-30% chance of an implant in radiated tissue failing and her losing more breast tissue is bad odds, but your patient who has lost half her breast already is likely to feel differently. Don't drum up business at her expense, and don't yield to pressure from the insurance company to use the preferred (cheapest) clinic. Your job is to support your patient's best interests, not yours. Further, if she's away during a procedure and in pain, please don't talk about your hairstyle, your new shoes, or the concert you're about to go to. She's laying there in pain with her chest exposed, and you need to have a little discretion in what you say. If you can't show empathy, be silent other than communicating about the procedure. If you talk about trivialities when the patient is in pain and stressed, it makes her feel like you think she's trivial or an object. She's a person worth respecting, no matter how many people you've seen in pain before.
I hope you understand that I write none of this in bitterness, but I want to be frank because people who want to be loving will read this and remember.
Basically, all of my comments amount to one thing: Treat the patient with the utmost consideration and respect, and throw in as much quiet generosity as you can. It may be just enough to bolster her toward healing.
Example Text
I appreciate someone else being frank with some of the feelings I had when I went through my BC treatment 7 years ago. I remember wanting to slap some people around, too. Still do, when people say things like "now's the time you have to look out..." or "My mother's BC came back when she was..." ARRGGhHH! I'm an MD, too, so I'm around WAY too many of those stories!!
Those pink ribbons? I hate pink. I don't want people to identify me primarily as a BC survivor; I don't want people giving me all sorts of "cute" and/or pseudo-inspirational things in pink or covered with ribbons. I think hypocritical corporations abuse the symbol for their own profit; great – raise $ for BC research, but don't tie it to "every time you buy one...we'll give...".
There are also more things people need to know; many of them speak to stereotypes of BC patients/survivors:
1) everyone isn't terrified they'll die; don't tell them they're "not taking it seriously enough". (Rly! I had one person ask me to call her sister, with IDC, and "help her know how concerned she should be.")
2) Don't ask "Why you?" Why not me? (Lots of this from my patients.)
3) Say "Oh, BC Chemo's a breeze; my (fill in the blank) worked all the way through...blah blah". I was completely wiped out 2 out of 3 weeks, and then had barely enough energy to drag myself to work that 3rd week. (had to pay the office rent!)
4) Say "You look so good... for someone with cancer" Leave the "with cancer" part off, please.
5) Ask "Does he know you've got cancer?" in a "Does he know you're dying next week?" voice – or at all, for that matter, in front of my 8 yo son. He has ears! and Yes, he knows I have cancer & you know what? He knows everyone doesn't die of cancer, too. He has a living Grandmom who had 3 cancers (2 breast) and a living Grandpa who had prostate cancer...etc.
6) Please don't assume my children should be gathered around my bedside throughout my treatment, or that I even want them there. My 19 yo daughter was at college & my 16 yo son was at a local residential high school. They called & came home occasionally. I didn't have the energy to interact with them; they respected that.
7) Ask people if you can do something specific for them – take out the garbage, as an earlier poster suggested, ordrive you to a treatment – patients often don't know what to request or may fear "seeming to be a burden".
8) On the other hand, if you have asked "Is there anything I can do for you?" and, when the answer is something you really don't want to, or can't do – don't just say OK, and then disappear. It's OK to say "well, I can't do that, but what about X?"
7) don't disappear from her life; BC isn't contagious & this may be when she needs you the most.
For me, it was a different experience from many of you other brave posters. I had come to terms with the extremely high probability I was going to get BC several years before. My Mother had 2 primary pre-menopausal tumors (No chemo or radiation in the 70's) and then ovarian cancer when she was 67. Obviously, there was a genetic sword hanging over me. (Mom just died, last month at the age of 80, from recurrent Ovarian Ca. We're tough women!)
When I found a lump, at the same age my Mother found her first one (42), there was no question in my mind it was BC. I went to my GP and told him "I have BC; I need a referral to Dr X" (my surgeon of choice). He was very dismissive... "oh, it's probably a cyst...". Then he felt it. "Ummm, you better have a breast surgeon look at this". Yeah, Ya' think?
Got in to see Dr X (a friend, best & nicest guy ever), he really didn't want it to be BC – I mean, who does? When they had us (me, my MD husband & my RN M-in-L... ) in for the "see every discipline in the hospital & then have them out-line every aspect of your treatment" day, the team was shocked, almost horrified, that I wasn't sitting in the room, hysterical with tears. I guess it's almost unheard of for a woman to have the attitude "OK, this is a road I've never been on. Maybe not where I'd like to be, but it's new – so let's see where it goes". Buddhist. Freaked the geneticists out, too, when I was interested in the advances in genetics since we'd been in med school.
I don't think I ever deviated from that path. Lots of things happened I didn't like, wished didn't have to happen, nasty, were painful, took time, "oh, not again", etc. I had everything taken out; my reconstructions are awesome. Nothing was awful, horrible, excruciating, terrifying, or any of the other hyperbolic words. (Well, there was that one post-morphine migraine...) I had to put my foot down with the team a couple of times & challenge their plans. Startled them; they were used to women just going along, doing everything they're told. Ha! My body, not theirs!
With the statistics on how many women will get BC in their lifetime, we owe it to ourselves to learn as much as we can about BC. All too many times, we just take what the Dr says as gospel "because they must know what they're doing". That's a great way to get over-treated, under-treated or the just plain wrong treatment. 2nd opinions are good.
And don't mind all those people who say stupid things, tell you what you ought to do or not do. They're just scenery on the road. You can say you've been there, done that – but I don't bring home the t-shirt with the smaltzy pink ribbon!
Beautiful woman. Beautiful courage. Fabulous guts!
So many great women have faced breast cancer, and I'm sorry you had to be one of them. A big hug and lots of love to you!
I agree with Awinda, but I would add that a lot of men have also found Male Breast Cancer survival a real trip in the dark. This year 2,000 men will find out they have Male Breast Cancer. Just a little bit of blue on the pink ribbons would help educate folks that men in small numbers can get Breast Cancer as well as women. I had it 28 years ago and have been educating people ever since that men can and do get Breast Cancer.
I was first diagnosed just over 3 years ago, and while I don't run around screaming "breast cancer survivor," I do like to keep an open channel and answer anything anyone asks. I try to make it personal goal to help educate – to let people know that the word 'cancer' isn't an immediate end. I discovered not long after my diagnosis that I carry a PTEN mutation which certainly put a spin on things, but, again, I will share my story or offer a ear to anyone that asks. (Aside from that, the long range side effects are a bear ... thanks nerve pain.) 🙂
We all embrace it a different way. Some wish to stay in a corner and wonder 'why me?' while others say 'let's deal and move on,' and others take a different approach. I will admit that I was sick of seeing the color pink for awhile, but I'm okay with it.
Blessings to you all.
Wow! You are all such vibrant ladies! I'm 2 yr survivor also, double masectomy + uterine, but refuse to "claim" any cancer as mine. I'm sad that so many didn't have good support and was lucky to have some of the kindest, most thoughtful people around me – strangers who wrapped me in their warmth and love, family who showed me what super people they became, and the best husband in the universe. We had a rule – both of us couldn't freak at the same time, one always had to remain sane to help the other one through. (We have the same rule about both being mad at the same time, so it wasn't hard to follow.) I did encounter many of the Don'ts mentioned, and agree completely. I also had family & friends who wanted it to be their experience of me having a disease..and I avoided them like the plague. Who has the energy for that? The scar thing is a trip, took a long time before I could look at it, but it was diverting to try to figure out what kind of tats to get (none so far.) The folks who think this is too much drama: there's a time and place for everything, and if this doesn't qualify I don't know what does. Today, I'm keepin' on, and feeling strong and healthy every day. Good luck to you all, Girls Rule!
My breast cancer is at Stage 0 right now and I've made my peace knowing that this is treatable right now, although there is an increased risk of recurrence by the time I hit 40 – I am 24. What really upset me was having people that knew me give me the pity look or ask me every time they spoke to me, or saw me, "How are you feeling today?" People that have known me for a long time treated me like I was frail and dying!
Yes, I am going thru hormone treatment which is NOT pleasant at all. Yes, I feel sick from it. Yes, my body doesn't look like it used to. But NO, I am not dying. I am here, alive and kicking, and I am normal just like the rest of you!
So thank you Amanda for writing this piece. May people read this and learn to apply this etiquette – an etiquette not too different from the one our parents were taught. (Ever heard of "do not point" and "do not stare"?!)
My BC was a Stage 2A – node negative, of which I'm thankful for. Not sure if I'll need Chemo or not, and that has me stressed unbelievably....I'm still waiting for my Oncotype DX test results. I understand and agree with several aspects of this gal's article. Everyone around me has been fantastic, but... if one more person does the what I call 'The Cheerleader' routine, I'm gonna scream! It's the: "your going to be fine; don't worry', or the "you're going to beat this thing' "your strong"- it's making me a little crazy, and for some reason feels dismissive. I know in the long run I'll be ok, but seriously – don't you think I feel scared right now? ** I just wish people would/could acknowledge or validate my feelings.** This seems to be the missing link here. Even my mom, God love her, sent me an email last week that said "you're going to be fine." I'm lucky, my pathology indicates a "very well behaved' and treatable tumor – and am grateful for that. It's the emotional part of myself that's still feeling traumatized that people just don't seem to get. Chemo scares the hell out of me – and I'd actually be okay with someone just saying to me that they would be scared too. And as Jane said above, if a friend says "is there anything I can do?" – I'm learning to say "yes – how bout coffee, a walk, a phone conversation." These things are keeping my sanity – – but will admit I wish I didn't have to ask at all. I'm so sorry for this rant; it seemed like a safe and appropriate place to express myself. Don't know, but maybe my friends are afraid about knowing the right things to say or how to really support me. My family has already put me in the 'safe place' because they and their families need to believe that I'll be ok. I just don't feel that I"m in that safe place 100% yet; the intellectual is still fighting with the emotional. And the roller-coaster I"m on where I hit peaks of being on auto-pilot managing surgeries and appointments to lows where I"m depressed and tearful is exhausting. I just want my life back! I'm a single woman – no kids, spouse, but has boat loads of friends and family, and a great support group, and a strong religious conviction. It just feels like something is missing. II truly do know everyone means well, but a compassionate or emotive statement or two might be the binding glue I need help make me feel a little more whole again.
having a difficult time recently with people coming to me, assuming i want to hear about their friend's sister's cousin, who was recently diagnosed with breast cancer. i say i'm sorry, and all the other lightweight things i'm supposed to say ("i'm sure she's in good hands", etc). but i don't know how to tell them: i am still going thru my own stuff right now, and i really really hope you're friend's sister's cousin will come thru the other side ok, but i also don't need to hear a blow-by-blow list of their treatments, surgeries, etc .... because it makes me relive my trauma. it brings it all right back up there, to the surface. most days, i can live without thinking one cancer-related thought, and nearly forget it happened. other days, like now, right before checkups and scary scans, i am convinced it's back inside me growing. so please don't expect me to go all Cancer Girl To The Rescue – i am a cancer expert and i am a fount of sage advice and wisdom – to make YOU feel better, please? because i'm currently riddled with anxiety and doing all i can to just make it thru, one day at a time.
thank you for this article and the comments. i feel less evil and selfish now.
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