I have never been a big fan of the whole Deadline 2020 (to end breast cancer by January 2020). How can you put a deadline on something like that? Apparently back in 2010 some people decided they were tired of scientists setting the research agenda time line so they decided to create their own deadline. How illogical... how over simplified.
Through my blog reading, I read the latest updates from other bloggers. One of them, Jennie, went to the recent Deadline 2020 people's meeting, which the metastatic breast cancer community calls, Deadby2020, at a high end resort in Napa Valley. I am flabbergasted that they can send a bunch of white healthy people to an expensive resort (that could be held in a Holiday Inn conference room in a cheaper area of the country) to discuss a topic while leaving out important portions of it. (Read Jennie's blog post to get all the details.) Perhaps there should be an investigation into misuse of funds here as well.
One problem is the Deadby2020 people ignore metastatic breast cancer and only focus on prevention, and women, and white women only (if their meeting is anything to go by). This leaves more than 40,000 people dying each year from the disease. And Jennie acted in the normal fashion of the metastatic breast cancer community and started live tweeting from the meeting. And was cornered and told to stop. This was after she was cornered and told to stop bringing up metastatic breast cancer.
I can't believe how rude they were to her. How selective they were to her. How unconcerned they were about her feelings and sensitivities. I have run many events myself and can understand how one person with questions can appear to alter the focus of a meeting. But if they are too narrowly focused they are not benefiting anyone. It would have been better if they had stopped their agenda and added a session on metastatic breast cancer and what can be done about it.
Also the concept of holding such an event which does not accurately represent the people they are trying to help while excessively spending (rooms start at $540/night), in my opinion, is basically unethical and irresponsible.What were they thinking? Or not thinking at all?
So, if you have dollars to donate, I would like to ask you to not donate to the Deadby2020 people (National Breast Cancer Coalition) and give them elsewhere which might be more inclusive and more representative of the people they are helping..
Showing posts with label rudeness. Show all posts
Showing posts with label rudeness. Show all posts
Saturday, March 26, 2016
Sunday, August 3, 2014
Unwanted interrogations
I really despise this. You reveal an ailment and get an interrogation in return. It doesn't matter how well you know the person, you just want to shut them up.
Recently, when asked about my wrist brace, I said my usual 'its a combination of tendinitis, tennis elbow, RA and more'.
These questions ensued:
Have you had a cortisone injection? Yes, two.
Do you take anti-inflammatories? Yes
Do go to PT? No but I go to a gym which is run by physical therapists.
Do you take vitamin B6? Yes to shut them up (and then I went home and checked my vitamin bottle).
Do you meditate? No but I knit and crochet and it has been shown to have the same effect.
Have you tried acupuncture? Yes (but not in the past year or so - something I didn't share).
I am so glad I didn't mention any other ailments.... The questions might never have stopped.
Do I know you? No. Is it any of your business? No. Do you mind shutting up now?
Recently, when asked about my wrist brace, I said my usual 'its a combination of tendinitis, tennis elbow, RA and more'.
These questions ensued:
Have you had a cortisone injection? Yes, two.
Do you take anti-inflammatories? Yes
Do go to PT? No but I go to a gym which is run by physical therapists.
Do you take vitamin B6? Yes to shut them up (and then I went home and checked my vitamin bottle).
Do you meditate? No but I knit and crochet and it has been shown to have the same effect.
Have you tried acupuncture? Yes (but not in the past year or so - something I didn't share).
I am so glad I didn't mention any other ailments.... The questions might never have stopped.
Do I know you? No. Is it any of your business? No. Do you mind shutting up now?
Tuesday, February 11, 2014
How rude, tasteless, insensitive and completely stupid
The UK based Pancreatic Cancer Action recently ran a series of ads saying such lovely things as "I wish I had breast cancer". Please close your mouth if you are gaping at this.
And the woman in the ad says she would do it again.
How bad is this? Let me count the ways.
How bad is this? Let me count the ways.
- The organization claims it is hard hitting on purpose - a shock campaign to raise awareness. Well tough cookies. I know you want to be hard hitting but you could do it with out being offensive. And rude, tasteless, insensitive and completely stupid. Where were your brains people? Where was your reality check on your ad campaign?
- The woman in the ad says she would do it again and has no regrets. I'm sorry you have pancreatic cancer and a short time to live. But you could have gotten the same diagnosis and prognosis with breast cancer.
- This is a nice clear example of how the pink ribbon campaigns and awareness have frivolized (if that wasn't a word, before it is now) the real severity of a breast cancer diagnosis. Cancer is cancer. And even if you paint it pink and put a little ribbon on it, its still cancer.
- No cancer is better than any other. I have had two 'good' cancers if you must (but really please don't). There is no good cancer. Stop comparing them.
Wednesday, October 17, 2012
Its none of their business
I always read the advice columns and sometimes snicker, sometimes agree, sometimes disagree. Today's Ask Amy column was about dealing with stupid ignorant people idiots when your spouse has a Stage IV cancer diagnosis.
The woman writing in was trying to cope with the clueless questions. It never ceases to amaze me on what people ask someone regarding their or another family member's cancer. Really? Did you need to ask if he was going to make it? Or if he has a will? Really?
When faced with a situation with someone with a precarious medical condition, before you open your mouth (and put your foot into it) stop and think about what you were going to say. Is it really appropriate? How would you respond if someone asked you that? Is it any of your business? What are you going to do with that little tidbit of information if they even give you an answer?
On the other hand, if you are the cancer patient or spouse of one, you may also be a bit overly sensitive to the questions. I know I was. I perfected the topic avoidance mode where basically I did not want to discuss it. And it was none of their business so I didn't feel I should discuss it. Ask me a nosy question and I'll tell you how my cat is doing. (He's fine, getting a little slower as he nears his 18th birthday.)
The woman writing in was trying to cope with the clueless questions. It never ceases to amaze me on what people ask someone regarding their or another family member's cancer. Really? Did you need to ask if he was going to make it? Or if he has a will? Really?
When faced with a situation with someone with a precarious medical condition, before you open your mouth (and put your foot into it) stop and think about what you were going to say. Is it really appropriate? How would you respond if someone asked you that? Is it any of your business? What are you going to do with that little tidbit of information if they even give you an answer?
On the other hand, if you are the cancer patient or spouse of one, you may also be a bit overly sensitive to the questions. I know I was. I perfected the topic avoidance mode where basically I did not want to discuss it. And it was none of their business so I didn't feel I should discuss it. Ask me a nosy question and I'll tell you how my cat is doing. (He's fine, getting a little slower as he nears his 18th birthday.)
Sunday, October 23, 2011
I wasn't evasive
I detest evasiveness. At times I find it rude. If someone asks you a question and you don't want to answer, it is polite to give some sort of answer and then change the subject to something you are more comfortable discussing. That is basic. But its the one's who will never answer any questions on any subject that really rile me. If you say 'did you have a nice lunch?' and they can't give any kind of answer - from it was okay, I had a tuna, I skipped lunch and went shopping or whatever but the lack of any kind of answer becomes rude. I don't need to know everyone's life story but sometimes a light conversation becomes impossible. Someone who is incapable of answering any kind of question, especially if they seek you out for social events, either has significant 'issues' and/or no social skills.
I know a few people but don't spend time with them because they don't answer questions. They only ask me questions. If you ask them an innocuous question such as 'what did you do for the holiday?' they evade the question. That is an easy question you could answer it in any number of ways 'I saw some friends, got together with family, went to a restaurant, brought a pie over to join friends for dessert, etc'. One woman said to me 'I didn't do anything'. A few weeks later another friend told me that she came to their house for the holiday. The original answer was basically a lie which is very rude.
I find when I spend time with people like this, I feel very frustrated. It is impossible to have a conversation with them, you can never get a clear answer, and I come away from it resenting them. They seem to want to know everything about me but refuse to tell me anything about them in return. It should be an even trade. You asked me what I did for the holiday and I told you but when I ask you, you lied. You asked me what I did for lunch and I told you but when I asked you in return, you couldn't/wouldn't answer.
I have had this happen with these people even when making choices on a menu at a restaurant - Caroline, what are you going to have?' 'I'm thinking of the chicken. What about you?' 'Why are you choosing the chicken, what do you think of the steak?' 'I'm in the mood for chicken.' 'Are you getting a salad or vegetables?' And on and on and on. Um, is my opinion that important to you or are you just incapable of making your own decision or have no social skills or practicing your skills for the next inquisition?
What happens in the end is I refuse to spend time with them and avoid them. I don't consider them a friend at any level and don't waste my time with them as I think they are rude.
However there are times when a little evasiveness is called for. I am sometimes evasive with my health issues when I am not ready to discuss them. If asked if about something I am not ready to discuss, I simply say 'I'm waiting to go back to my doctor', or 'I'm feeling okay these days', etc. Which is some sort of answer and allows for a conversation. I also sometimes use some evasiveness to edit myself. When I wear my lymphedema sleeve - which is only at the gym or when my arm is bothering me - sometimes people ask what it is. I have taught myself to just say it is a compression sleeve and that's it. Its the truth, its a compression sleeve but there is no reason for me to go on and say 'well I had breast cancer and now lymphedema'. I do not need to spew out my medical history to virtual strangers.
Earlier this week, a woman walked into the locker room a t the gym as I was putting on my sleeve before going to lift weights. She asked what the sleeve was for and I said it was a compression sleeve due to arm issues. That was enough. That was all she needed to know. I was slightly evasive I felt but told as much of the truth as I wanted. She got an answer that she was seeking and was satisfied. We both were happy with the interaction.
I left the locker room and went into the weight room where there was a woman working out. She asked me 'did you have an axiallary node dissection? I'm a physician. But I don't mean to pry." I said yes and we had a discussion about how long after surgery that I developed lymphedema (1.5 years) and what caused it (a fall on my arm on ice). But we didn't discuss my cancer etc. It wasn't part of the discussion. In the second conversation I told what as much of the truth as I wanted and she got the answer she was seeking and was satisfied as well. We were also both happy with the interaction. I felt I was a little evasive by not telling the whole story but I also didn't feel the need to unload my medical history - she wasn't my doctor.
The balance of evasiveness with telling the polite truth can be a fine one. Not everyone wants to know my medical history anyway. Its also me coping with my issues in learning to talk about things politely without evading and without recounting my entire medical file. I don't want to be rude and think I have figured out basic politeness by now.
I know a few people but don't spend time with them because they don't answer questions. They only ask me questions. If you ask them an innocuous question such as 'what did you do for the holiday?' they evade the question. That is an easy question you could answer it in any number of ways 'I saw some friends, got together with family, went to a restaurant, brought a pie over to join friends for dessert, etc'. One woman said to me 'I didn't do anything'. A few weeks later another friend told me that she came to their house for the holiday. The original answer was basically a lie which is very rude.
I find when I spend time with people like this, I feel very frustrated. It is impossible to have a conversation with them, you can never get a clear answer, and I come away from it resenting them. They seem to want to know everything about me but refuse to tell me anything about them in return. It should be an even trade. You asked me what I did for the holiday and I told you but when I ask you, you lied. You asked me what I did for lunch and I told you but when I asked you in return, you couldn't/wouldn't answer.
I have had this happen with these people even when making choices on a menu at a restaurant - Caroline, what are you going to have?' 'I'm thinking of the chicken. What about you?' 'Why are you choosing the chicken, what do you think of the steak?' 'I'm in the mood for chicken.' 'Are you getting a salad or vegetables?' And on and on and on. Um, is my opinion that important to you or are you just incapable of making your own decision or have no social skills or practicing your skills for the next inquisition?
What happens in the end is I refuse to spend time with them and avoid them. I don't consider them a friend at any level and don't waste my time with them as I think they are rude.
However there are times when a little evasiveness is called for. I am sometimes evasive with my health issues when I am not ready to discuss them. If asked if about something I am not ready to discuss, I simply say 'I'm waiting to go back to my doctor', or 'I'm feeling okay these days', etc. Which is some sort of answer and allows for a conversation. I also sometimes use some evasiveness to edit myself. When I wear my lymphedema sleeve - which is only at the gym or when my arm is bothering me - sometimes people ask what it is. I have taught myself to just say it is a compression sleeve and that's it. Its the truth, its a compression sleeve but there is no reason for me to go on and say 'well I had breast cancer and now lymphedema'. I do not need to spew out my medical history to virtual strangers.
Earlier this week, a woman walked into the locker room a t the gym as I was putting on my sleeve before going to lift weights. She asked what the sleeve was for and I said it was a compression sleeve due to arm issues. That was enough. That was all she needed to know. I was slightly evasive I felt but told as much of the truth as I wanted. She got an answer that she was seeking and was satisfied. We both were happy with the interaction.
I left the locker room and went into the weight room where there was a woman working out. She asked me 'did you have an axiallary node dissection? I'm a physician. But I don't mean to pry." I said yes and we had a discussion about how long after surgery that I developed lymphedema (1.5 years) and what caused it (a fall on my arm on ice). But we didn't discuss my cancer etc. It wasn't part of the discussion. In the second conversation I told what as much of the truth as I wanted and she got the answer she was seeking and was satisfied as well. We were also both happy with the interaction. I felt I was a little evasive by not telling the whole story but I also didn't feel the need to unload my medical history - she wasn't my doctor.
The balance of evasiveness with telling the polite truth can be a fine one. Not everyone wants to know my medical history anyway. Its also me coping with my issues in learning to talk about things politely without evading and without recounting my entire medical file. I don't want to be rude and think I have figured out basic politeness by now.
Tuesday, September 8, 2009
Blogging and opinions
My blog is my opinion. Its that way because I write it. And yesterday I wrote about the rude jerk (who we saw again in the local diner where my husband and I went for breakfast yesterday). He sort of tried to get my attention again but I ignored him. Anyway, I am allowed to have my own opinion. Someone left a comment yesterday about how these things happen for a reason and maybe I should keep an open mind. What? Me, an open mind? I think I do have a relatively open mind. I don't have time for rude people who butt into conversations but in general I am pretty flexible and open to new ideas. But if they could cure cancer through energy healing and brass gongs, cancer would have gone away a long time ago. So buddy, get back to me when you have a real cure and not just snake oil. Me I'm leaving the solution to the research scientists who know what they are doing.
In the meantime, this week is a three day work week for us. Yesterday was Labor Day (well, doh, you knew that) and Friday we go off on vacation. This means I need to fit five days worth of work into three. And it means I need to leave for work in the next twenty minutes and not get home until around 6... A long day. Sigh. Maybe Walter will cook dinner. But tomorrow I work from home for a few hours and then go to work from 10-4. Thursday I'll work 8-3 or 4 and then do all kinds of fun things like take my computer off to rehab (a/k/a a computer tune up while we are out of town) and the cat off to his vacation (at my parents). Some how I am also supposed to pack and get organized.
I could have been more productive this weekend. Saturday was sailing. Sunday was I can't remember (chemo brain). Monday was gardening, work from home, run a bunch of errands. Now I remember Sunday - we ran errands and bought a living room sofa which will be delivered in October.
I was an air head yesterday and messed up my pills. I have two that I take the second I wake up because one of them needs to be taken on an empty stomach - 1 hour before or 2-3 hours after eating and not in combination with my calcium or prilosec. Then an hour later I take my back pills with food. Then a couple of hours later or sometime before dinner I take my vitamins. With dinner I take more back pills. Well, somehow, yesterday I took the wrong pills in the morning and skipped the empty stomach one. Well I figured this out about 6 pm as I was cooking dinner. So I took it not on an empty stomach and figure it might be a little less effective since it wasn't in optimal conditions but at least I took it. Today I paid more attention and got it right.
Yesterday I barely wore my stupid air cast. I am quite sick of it. Today I am not going to wear it but I will take it with me in case my ankle starts to act up. I went on a big walk yesterday which felt good but made my back hurt and made me tired. Wait, my back hurt from gardening with my stupid air cast on. Work involves lots of sitting with very short walks to the printer and the bathroom (both about 10' - in opposite directions of course).
But now I need to get moving so I can get out the door in the next 15 minutes - after I eat breakfast and get dressed.
In the meantime, this week is a three day work week for us. Yesterday was Labor Day (well, doh, you knew that) and Friday we go off on vacation. This means I need to fit five days worth of work into three. And it means I need to leave for work in the next twenty minutes and not get home until around 6... A long day. Sigh. Maybe Walter will cook dinner. But tomorrow I work from home for a few hours and then go to work from 10-4. Thursday I'll work 8-3 or 4 and then do all kinds of fun things like take my computer off to rehab (a/k/a a computer tune up while we are out of town) and the cat off to his vacation (at my parents). Some how I am also supposed to pack and get organized.
I could have been more productive this weekend. Saturday was sailing. Sunday was I can't remember (chemo brain). Monday was gardening, work from home, run a bunch of errands. Now I remember Sunday - we ran errands and bought a living room sofa which will be delivered in October.
I was an air head yesterday and messed up my pills. I have two that I take the second I wake up because one of them needs to be taken on an empty stomach - 1 hour before or 2-3 hours after eating and not in combination with my calcium or prilosec. Then an hour later I take my back pills with food. Then a couple of hours later or sometime before dinner I take my vitamins. With dinner I take more back pills. Well, somehow, yesterday I took the wrong pills in the morning and skipped the empty stomach one. Well I figured this out about 6 pm as I was cooking dinner. So I took it not on an empty stomach and figure it might be a little less effective since it wasn't in optimal conditions but at least I took it. Today I paid more attention and got it right.
Yesterday I barely wore my stupid air cast. I am quite sick of it. Today I am not going to wear it but I will take it with me in case my ankle starts to act up. I went on a big walk yesterday which felt good but made my back hurt and made me tired. Wait, my back hurt from gardening with my stupid air cast on. Work involves lots of sitting with very short walks to the printer and the bathroom (both about 10' - in opposite directions of course).
But now I need to get moving so I can get out the door in the next 15 minutes - after I eat breakfast and get dressed.
Monday, September 7, 2009
Politeness, eavesdropping, and rudeness
Yesterday I met a friend for coffee (and breakfast). We were sitting there minding our own business discussing cancer, recurrences, surgery, metastases, doctor's opinions and all sorts of other warm fuzzy things cancer people discuss. The man at the next table interrupted us to tell us about his method (which isn't really his and he wasn't selling it but here's a website and the guy's name who started here in Boston and he has about 100 centers and there's a place on the south shore where they have weekly meetings at 11 on Saturday mornings where you can go and learn more) that uses people's energy and a brass doll or something as a chime to heal people. Now he perturbed me on several levels.
- He butted into a private conversation. Its one thing if the people at the next table have an overly adorable child you want to comment on or you really want to find out where the person got their clothing so you can go buy your own or they are having a medical emergency and you are a trained EMT, then its probably okay to interrupt. But a private conversation on something that is kind of personal? No, go away. Aren't you supposed to politely ignore what is going on around you (unless its a two year old in a temper tantrum)?
- He interrupted I think a total of THREE TIMES. Clearly clueless and he forgot what his mother taught him. But he wasn't selling anything (but he has been in holistic healing for nearly 20 years and a few years ago a friend who is an acupuncturist told him about this and how he now has included it in his repertoire and we can go to a meeting on Saturday mornings at 11).
- He wouldn't take the hint and shut up. My friend was better at getting rid of him than I. I wrote down the damn website to get him off our back (but have since lost the piece of paper - damn (NOT)). She managed the polite 'thank you' and turned away.
Its unfortunate that some people want to take advantage of other's misfortunes to make money. Cancer is not going to be cured through energy healing and a brass gong. Sorry. Go bug someone else. Unfortunately he did tell us he goes to the same coffee shop every day which means I will have check whenever I go in and that he lives near by.
After I got over that idiot, I managed to enjoy my day. I went for a walk and then we ran a bunch of errands. But I got a tiny bit tired and my back protested so I hung out with my ice pack for an hour (and watched a cooking show - my secret addiction). Today, we have all sorts of things to do and my back hurts. (Now there's a surprise.) But my ankle is feeling okay. I might attempt a slightly longer walk than yesterday.
- He butted into a private conversation. Its one thing if the people at the next table have an overly adorable child you want to comment on or you really want to find out where the person got their clothing so you can go buy your own or they are having a medical emergency and you are a trained EMT, then its probably okay to interrupt. But a private conversation on something that is kind of personal? No, go away. Aren't you supposed to politely ignore what is going on around you (unless its a two year old in a temper tantrum)?
- He interrupted I think a total of THREE TIMES. Clearly clueless and he forgot what his mother taught him. But he wasn't selling anything (but he has been in holistic healing for nearly 20 years and a few years ago a friend who is an acupuncturist told him about this and how he now has included it in his repertoire and we can go to a meeting on Saturday mornings at 11).
- He wouldn't take the hint and shut up. My friend was better at getting rid of him than I. I wrote down the damn website to get him off our back (but have since lost the piece of paper - damn (NOT)). She managed the polite 'thank you' and turned away.
Its unfortunate that some people want to take advantage of other's misfortunes to make money. Cancer is not going to be cured through energy healing and a brass gong. Sorry. Go bug someone else. Unfortunately he did tell us he goes to the same coffee shop every day which means I will have check whenever I go in and that he lives near by.
After I got over that idiot, I managed to enjoy my day. I went for a walk and then we ran a bunch of errands. But I got a tiny bit tired and my back protested so I hung out with my ice pack for an hour (and watched a cooking show - my secret addiction). Today, we have all sorts of things to do and my back hurts. (Now there's a surprise.) But my ankle is feeling okay. I might attempt a slightly longer walk than yesterday.
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