The dumbest things people have said to you/about you
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When I called my brother to tell him I had BC my not so smart sister-in-law got on the phone and said "I know exactly how you feel...its been very difficult dealing with (insert daughters name) overactive thyroid". Really? Last time I checked and overactive thyroid doesnt kill you. Needless to say, I dont spend too much time talking to her.
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Rats! I should have taken my grandfather's nickname for me - Cassie. Of course, he was the only one who ever called me that and he's been gone since 1973. I adored him.
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My gradfather, pop pop, called me boose-a-girl. His childish way of calling me his beautiful girl. He died in 1972. I never thought of using that.
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I was chatting with a friend today and I was sharing with her some of the "dumb things" people have said to me since my BMX. Her jaw hit the floor several times....... Then she asked, "Men said these things to you, right?" When I told her they were all women she was floored. She couldn't understand how women could say such "insenstivite" things. Good point!
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my co-worker, who is now doing the job I quit until the interim director comes in, said he could relate to my sleeplessness because his partner gets up a lot at nigh? I don't think they are the same...almost played the cancer card with him on Thursday when he said "X has said that these meetings are mandatory for all teachers!", when I told him I would not be going to the meetings as I had DR.'s appointments on Fridays..he asked me to change them....oh ..ok..and told me I was not behaving like the team player I said I wanted to be and couldn't when I was running the department..so prove it... be a team player and everyone can see I am on his side....but I'm not...and I am not going to lie so instead I have opted Not to be there so I do NoT say anything...I figure that is ME being a team player...I am doing a team of one at the moment...me...my team of sort this medication reaction out now before I toss the box and never take an AI again...I do not want to play the cancer/heart attack/TIRED card...didn't play it a year ago when I was going through radiation...a year ago on Tuesday....wow...but I wasn't tired then....I am now....
My name came to me when I went to write in my own name....and it was taken....it was last January and I realized I was alone with this stuff....crisis over and managed and supported and here it was an evening and I REALLY wanted to know if it was the hotflash causing my lousy sleep then...yped in 'sandeeonherown'..a step out of denial that my ex is gone and I am who I have.
Think I need to toss him into Jo's bonfire.
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I know there are women in far greater pain than I am and facing more serious consequences but I have felt so bad for so long that I feel like giving up. I am almost completely housebound and, if this diarrhea keeps up I will be bathroom bound. I am in constant pain from my hip and I can't get it operated on until I have my carotid artery cleared. Since the stroke I am experiencing dizziness and feel even more unsteady on my feet. Sleep is hard to come by. Even if I am exhausted I can't seem get to sleep and to stay asleep. I don't know what is going on except there are more and more times I feel like jumping oiut of my skin (I'm already on an antidipressant).
There are so many really good women here that put up with a lot more than I do and still praise the Lord whereas I just want to throw in the towel. What's wrong with me?
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My grandfather used to call me Lassie. For a long time I thought it was because I was special - turned out it was his Scottish background and forgetfulness at work. He called all of his granddaughters Lassie. Still, it is nice to think of him.
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Kathleen, I am so sorry you are having such a difficult time. You are going through so much right now. Actually, you are going through more, not less, than what a lot of us are experiencing. Please be kind to yourself. Cancer, stroke, carotid artery blockage, and hip pain is more than a full load of problems. Please do not "throw in the towel." Call your doctor, vent here, or do whatever you need to do to get the help you need. Thank you for talking to us. Sending hugs to you.
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Nothing's wrong with you, Kathleen. That's a LOT of stress to have piled on you at once. And maybe you need a different pain med or antidepressant; I was lucky enough to be helped by the first antidepressant we tried, but have had friends and coworkers who tried 2 or 3 different pills until they found one that worked. Maybe you need the dosage of the drugs you're on tweaked - they'll typically start you off with a low dose, so maybe you just need a higher dose. I did well on Lexapro the first few months, but could gradually feel myself sliding back into that black hole. They upped my dose and it made a big difference. Being in pain and feeling hopeless are medical issues that need to be addressed. This shouldn't be something you just have to put up with.
Could you ask your doctor for a care conference? Typically, a representative from all the medical services involved in your care, as well as nursing, pharmacy, social work, etc. meet to discuss your multiple issues and how to prioritize or decide what need to be tackled.first? If the docs caring for all of your problems can get on the same page and hammer out a plan of action, it might help you not be overwhelmed by everything at once.
How is your support system? Do you have family and friends who could help pitch in on the little things that will make things smoother for you, like buying groceries and even cooking dishes that you can warm up later? If not, your doctor can put you in touch with Social Work. They're great about knowing what help is available for you, from housecleaning duties, to transportation issues, to home care nurses visiting your home regularly.
Hang in there. You can do this, you just need some help to feel more in control of your life. Please keep us updated; and we're here if you need to vent.
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Kathleen, I find myself in the same place MANY days.. i will tell you, that PAIN is the kicker for me. thats; where i started.. it took 6 trys on meds, till we found one i could tolerate then, the same dance with breakthrough dose of something else.. when im about to "lose it" im usually had signifigant pan for more than one, or two days.. i still have a LOT of pain from my ms its late stage, and was aggravated by chemo...
they added zanax a very light dose, .025 ; for me to stay calm, whenever the pain kicks in... so, see about something for anxiety, cause you simply can't deal with chronic pain, and not get "crazy" for it. then, when my pain got under control, i could deal with the depression...
from MY experience, " telling" on myself (which is WHY THIS thread is so imp to me; is the single best thing for me.. i feel like I can come here, and tell on days i feel like "giving up"
the problem with that is, YOU CAN't or I CAN'T... i still hurt im still depressed, lying in bed with the covers over my head... and the pain is still there, and the panic is still there... somedays, i wish we could just WISH I could just DIE, and it'll all go away... but my mom , who had copd and i realized long before she died, that wishing yourself dead doesn't work... so, you gotta do what you can to fix the problems making you feel like that..
it's NOT the same as being suicidal for me.. we call it "the better off dead days" which ARE different than suicidal days...
thats just my thinking, but it is working for me. i still allow myself 3 days off , for mental health days, then i have to get the pa in under control again... the most imp thing is, to find something that controls the pain..not take it all away; i don't think thats possible, anyway... a good day is a 7 out of 10; and, if im vigilant, don't panic, i can get there... its real, its not shameful, and it CAN work!hang on, girl, better days WILL come, after you get the pain issues under control>>>> 3jays
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You ladies are truly wonderful. I appreciate your support as you are the only ones who truly understand the emotions you go through when you bave medical problems and pain. It is 4;00 a.m. and I have had about 3-1/2 hours of sleep. The problem is that at night there is nothing to distract you from the pain and all you can think is that if you have to live like this, what's the point. But, oh my, how that pain beats you down. I know I have to endure until these medical problems are resolved but its so hard. Again, thanks for being there - it helps a whole lot.
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This is a bit off track but I remember reading Lance Armstrongs first(?)book and his struggle with cancer. Different gender, 2d hand sourse et cetera but he was accused of using chemo to become a better biker. It was speculated if "something hadn't been slipped into his chemo coctail?".
Chemo as a means of doping?!
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Kathleen you got great advice from the other posts, but let me add that for some reason the last couple of weeks have been tough for me too. Is it the weather change? The time change? Cold weather can really exacerbate my pain as well...but now I have trouble with my bowels, too...sigh.
I am seeing a therapist that I have really clicked with. He gets tears in his eyes at times, too!! He asked how long I think I'd need him and I told him that I would need him until I didn't think that suicide is an "option". He knew I wasn't kidding!
I've heard it said that suicide is a permanent solution to a temporary problem, but chronic pain just has to come higher on the awareness scale. Maybe we should have our own ribbon and month? February is the highest suicide month, so let's make it ours and we'lll have a black ribbon!!! All in???
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Kathleen,
First off, ((((Hugs)))) to you! You do have a lot on your plate, and as my psych would say, situational depression is a very normal response. I am so sorry you are feeling so blue. And it doesn't matter if some other folks "have it worse" - your life is your own, and what you are having to deal with is overwhelming to you. I wish you the best, and please know there are so many of us who are here for you in whatever way possible.
As for my own situation, I am not suicidal, just very depressed and mood-swingy, and am terrified about switching antidepressents (tomorrow!) to begin Tamoxifen. One step at a time. I have lived with chronic pain (spinal injury) since long before BC, it can be so overwhelming and since it's not something visible, people just don't get it, do they? Sigh. This is not what I wanted in for myself in my 30s, but as my dad told me last night, I have to "play it as it lays". Sage advice from someone who is a Stage IV cancer patient himself.
And now for some dumb things people say...I cannot tell you how many people have said, since I finished rads, "Aren't you happy, you don't have cancer any more/you're all done/your life is back to normal/etc." They forget or don't understand that this is a journey that doesn't just "stop"...it is the "gift" that lasts a lifetime. I have chemo-brain to the extent that I can't even remember close relative's names or common words all the time, new study says it may cause brain changes that never go away?!?! I am starting Tamoxifen tomorrow. I am having post-surgical follow-up next week. I am dealing with (albeit mild) LE. I am about to get lung CT, colonoscopy and endoscopy, and some other test I cannot even pronounce for suspicious areas on PET. I can never have children, and as if to hammer that fact home a little further, my new onc wants my ovaries removed. I still have one breast and I'm still waiting on reconstruction. I am wondering if my nerve pain will ever go away. I have a heart problem thanks to Adriamycin. I am having major relationship issues with family and SO that haven't just magically stopped along with rads. Oh, and my small business is going bankrupt...I am losing my home, my "American Dream" is ending. My finances are shot. And all of this is happening because of my cancer that is supposedly "over". Yeah, I know people mean well when they congratulate me on finishing treatment...And it's not really "dumb" I guess, just frustrating. But then when they wonder why I'm depressed and scared rather than jumping for joy, it starts to creep into the "dumb" file...
My best to all who have "been there" or are in the thick of things right now. At least we have each other to lean on for support, because I think most of us can understand and relate to so many issues that "normal" folks just can't grasp.
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I will be 11 weeks pfc on wednesday.....finished rads about a week and a half ago...was feeling pretty hopeful that very soon i would start to feel myself - a 'friend' came to visit me a few days ago...unannounced by the way - but some of the things she said and asked me just put me in a real downward spiral.....wth....many things she said were insensitive...but the best....she cheered me with her drink and said...here's to your 88,000 dollar treatment....i didn't know what to say. have been having bad dreams ever since....i know finances are a concern - but did you have to throw that in my face after going thru 9 months of hell???? i'm not sure i can think of her as 'friend' anymore....that is sad. i'm thinking she must have been feeling bad about herself...and misery loves company...
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sorry for venting...but i just had to. i can't seem to put this visit behind me...
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Ummm...Patti? Read the vent above your vent, and it should put the word vent into perspective, LOL. You have every right to vent...we all do! If you need to apologize for your vent, I can't even begin to imagine how to make amends for mine that was roughly the length of a Dostoeyvsky novel!!!
Seriously though, I am sorry your friend's words hurt you.
Signed,
Royal Grand Poobah Defending World Champion Venter0 -
bluecowgirl....LOL! you are so right...i'm not sorry! yay for this post....i hope you have a GOOD day today.....big hugs to you.
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Patti please don't feel badly for venting or that your "friend's" visit affected you the way it did. Some people just don't get it, and this forum is so important in that it allows us all to connect and be real about our experiences. It's tough enough in this life to hold home and career together let alone cancer coming into the mix. You all amaze me with your strength and fortitude. I hope for those of you dealing with depression that improved health in coming years, good news when it's needed most, and support that helps you through this difficult period. It think we all need to be kind to ourselves because we are not only dealing with home and family and career and kids but our own health situation as well. Like Blue Cowgirl I find myself worrying about income as I'm unemployed and looking for work right now, and how I'll keep it all together. I see a lot of determination and strength in so many discussions on this forum, and it is heartening. It is good we are here for each other.
Community and shared experience is so important because it helps us keep perspective. When my mother went through bc back in the early 70s she had no support group, just relatives who pitied her and our immediate family who tried to comprehend what was happening. She never questioned her doctors and in those times, she was told what treatments she'd have, never fully discussed or explained. Things have come a long way.
One other thing that in my early journey with bc I came across.....I have to keep reminding myself that even the most sensitive of doctors is still a scientist who deals daily with cancer. When my bc told me that many women with early stage DCIS have mastectomies, that many of those are in fact physicians, I was dumbstruck. He said if very casually and it hit me like a ton of bricks. It seemed like such a radical treatment for something stage 0 and not invasive. Didn't he realize that having your breasts removed was a major life decision and procedure, something that would affect the rest of your life? I couldn't believe what I was hearing. But then I realized that as a scientist, he's seeing it from a very different angle that I, the owner of breasts that had a mind of their own. So sometimes, the comments of others need be taken in context. I didn't have to agree with him, and I didn't.
This doesn't excuse the insensitive spouters of wisdom who know not what they are talking about. We've all had more than enough of those!
Good luck and health to us, amazing women all.
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Olivia, your journey seems to have just started....most women with DCIS DO get mastectomies as the spread of the cancer through the ducts is hard to remove without taking most of the breast tissue anyway. I wasn't too sure about your statement...is he saying many female doctors get mastectomies with a DCIS diagnosis? If so, that would validate what I'm pointing out.
I know it seems extreme that the lowest grade gets the worst surgery. That's whay I don't understand a lot of the fights that go on with stage iv women who think their treatment is the worst. It's all in perspective....we're all going to die of something! And yes, I have seem women on this site that started as DCIS and died as stage iv!! Cancer is cancer is cancer is cancer. Stage is only for treatment purposes!!
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Barbe yes, early days as I had my lumpectomy in August this year.
Everyone's case is different. Mine was grade 1-2 and they did not find any malignancy. So my DCIS diagnosis was based on the cell architecture not that cancer was found. The area was 4 cm but my margins were clear and acceptably wide enough according to the doctors so no more surgery was required. In my post op meeting with my bc, he pointed out the four standard follow up treatments: mastectomy, Tomox, radiation or regular exams and mammograms. I had a meeting with the radiologist and we discussed my history and pathology. I felt rads would be over-treatment and he agreed. From what I have been told when you are small breasted and the DCIS is widespread or IDC, mastectomy is often the choice. Since I'm a D cup, the difference after my lumpectomy is minimal. From all the conversations I've had re early DCIS, it seems lumpectomy and rads are more common than mastectomy. A lot of women on this site say that they constantly worried about recurrence (or that it was high grade or invasive) so they chose mastectomy. So it's a combination of your comfort level and your specific diagnosis.
Yes the bc was referring to female physicians who had a DCIS diagnosis. I have also discussed fully with my GP who has a friend with DCIS who had a mastectomy because she was so small breasted that the lumpectomy would have practically had the same affect. My GP said that my reasoning to proceed with regular exams and mammograms was sound. I'm going to also investigate whether an MRI might be good to do at this time as sometimes things show up there that do not on a mammogram.
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First, let me thank you all for your support. It means so much to me.
One of my sisters told me not to "obsess" about it. This was shortly after the bimx! I just now thought of a response ... could I at least "obsess" until the scars heal?
Barbe ... my little Canadian friend. I am so sorry you are hurting. I'm not sure I would ever go through with it but I think suicide is an option too. If I wasn't down before I just got back from a visit with my PCP who was discouraged about my anemia and thought I should have a colinoscopy to see if I was bleeding into my intestine. Great, now I might have Colon cancer. If I do its been brewing since 2009 which is when the anemia was diagnosed. And why doesn't someone do tests while I am hospitalized for a host of other issues?
Cowgirl - I like your sense of humor and your support. Pretty soon I may be finished with my pity party but not just yet.
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kathleen , i have microcytic anemia too, and my colonoscopy was negative, they think its just a genetic thing!
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Juliet ... what treatment are you on for your anemia?
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just otc iron and b12 tablets , its a mild form but as you know once you get a cancer diagnosis something that was we will recheck labs in 6 months and treat if it becomes a problem became you should have an egd and colonoscopy!
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I have 2 from my husband . . . still cannot get over it. He said that he can now see why John Edwards cheated on his wife because the husband doesn't get any emotional support during this process, not that he would of course. OK. The other comment was that he actually liked me best during chemo because I needed him more and appreciated him more.
Are you kidding me? How supportive is that!
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Holy crap! You win this week's award BoysMom and it's only MONDAY!!! What a dink? Do you love this guy? Is he worth hanging on to? Is he the one with the insurance???...ehehhehehehe Sometimes - no - make that ALWAYS, cancer brings out the worst in people.
Olivia, you were very lucky that your DCIS was in a smaller contained area!! Are you going to take tamoxifen? I take NOTHING!! I didn't get chemo or rads either. I had a very rare cancer that they had no idea what to do with so I said "take 'em off" and I did. My surgeon even said to "Save the big guns until next time." At that point I thought I was very lucky. Now I realize what a stupid comment it was. So you and I have just had surgery. My cancer was Pappilary Carcinoma and is to be treated like IDC. But, I had isolated tumour cells and micromets in my nodes. In fact, two nodes were mashed together, which I understand is a very bad sign. Still no further treatment. I've been walking around waiting for the other shoe to drop for 3 years. Still have my silly sense of humour though...
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Oh my gosh, IlBoysMom! A couple of hours ago I was told by a family member that I was nicer before my BMX and right afterward because I was needy. Now, post BMX and in the middle of the recon waiting game, I'm a bit edgier. Yeah, I'm edgy alright.
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It has been my experience that people go overboard .. "oh my GOD you have CANCER!!!!" or they have opinions on your mood before and after. I mean, we are the SAME people, just that something has been thrown at us that demands our immediate attention and we are charged with making decisions that change the course of our lives. Edgy? Moody? Maybe a little abrupt when we correct misinformation? You betcha.
Moms, so sorry your husband said what he did. Men tend to feel the need to protect and make anything bad that happens to us go away. In childbirth and in serious illness they are rendered helpless. He may be feeling inadequate.
Barbe, so sorry you feel as if another shoe might drop but I'm sure you have a top doctor here in Canada as I do, and they do know their stuff (doesn't mean we don't think for ourselves though). If your cancer was very isolated and you had it surgically removed, you have done a lot toward ending your cancer in your life. We all have to hope the odds are in our favour.
I am not doing Tomoxifin, rads, anything other than self exam, doctor exams and MIR or mammograms. I don't like what I have heard about Tomoxifin and since they got everything out and found no malignancy I can't see a reason for me to take it. In my post op appointment I told my bc that Toxofin and mastectomy were off the table given my pathology report. He did not disagree and my GP agreed with me. I had a meeting with an RO just to ask questions and gain his counsel. He agreed I don't need rads given my path and history. Saving the big guns in case I ever need them, that's my game plan as well.
It is a funny thing but when I had the questionable mammogram I was not worried. I always thought I would be because my mom died of bc. But it was as if I knew it was going to be fine. They gave me the option of biopsy or wait for another mammo in 6 months and I chose biopsy because I wanted to know what that curved chain of stars that I saw lit up on my film really was. The biopsy indicated ADH. They suggested surgery and I agreed, even if it was only ADH I wanted it out before it could turn into anything more. I was very lucky, I do believe that. I believe in treatment aggressively but not over-treating. From everything I've read there is over-treatment for DCIS but until they know more about this disease it suppose it is better to be safe than sorry.
We all have to keep our humour, so important, glad you are still smiling there Barbe!
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Kathleen, this may sound crazy but my dad, who is diabetic, is also anemic. They had him do all the tests for upper GI bleeding, lower GI bleeding looking for where he was losing blood, but all the tests were negative. They put him on the iron pills and he takes a fist full of vitamins and supplements every day. He was finally tested for kidney function and found out he had reduced kidney function, he now sees a renal specialist for this problem. The specialist discovered his kidneys don't produce a hormone that promotes red blood cell production. He now gets a shot every week to help produce the red blood cells. He is still anemic but not nearly as bad as he was 5 years ago when he had to get 2 units of blood because he was so low. He still needs an occasional unit of blood but not as frequently as he did before he started the shots.
Sheila
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