Lets do a Sh*t People say to Metastatic BC Patients
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Sorry about your video, Fitz - yes, it is sad. But, thanks so very much for starting this thread.
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My onc sent me for a chest x-ray Friday to rule out one reason why I might have spiked 103 temp on thursday. The X-ray tech asked if I had ever had comparison x-rays before and I explained, yes- I had stage iv breast cancer mets to lungs, so I've had plenty to compare to. She told me that her mother and her aunt had breast cancer and it "runs rampant in the family". She said that if she gets it, she'll "just deal with it. I have to. I have kids at home". She then proceeded to tell me that I seem strong, so I'll be OK.
I just had to let it go. Hmmmm. I have a kid at home too. Somehow that didn't preclude me from being OK. You would think that in her field and with her family history, she would have more of a clue.....
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surfdreams, I am a friendly, sociable person, so when I first started treatment, I appreciated friendly, sociable lab, CT, xray, etc. techs. I no longer do. I just want to go, say hello, get the test done and skip the small talk. Fortunately, I have most of my tests at a small local hospital - most of the techs know that I am getting tired of all of it and just want to get it over with and go home!
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I feel the same way, Reality. I no longer have patience for small talk! I just want to get it over with and go home!
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OK this was told to me just this past friday, while waiting for dracula to take some blood, as part of a pre-op thing. It's not stupid shit, but it is something that you don't hear every day.
"If a man can't love you with out your breast, then he doesn't deserve to love you at all." Told to me by a total stranger, a male at that. His wife had stage iv melonoma. It came from a talk I was having with them and another woman about why we were sitting there. This totally made my day for a stranger tell me something like that.
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A close friend said to me the other day - "I don't know if it's from getting older, or chemo brain, but you seem a lot less tolerant and more snippy (read cranky) lately". Um, really????? I wonder why? Maybe it's got something to do with "not suffering fools gladly"?
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I agree about the small talk. I'll gladly make small talk with strangers, techs, etc. - but just don't make it personal. The only reason I gave her as much info as I did initially was to explain things that might show up weird in the X-ray - ie: the port that was already accessed for infusion that day, and the still healing abscess from the old port removal in November. I wasn't looking for her input on my prognosis or her plans for"dealing with it" if it happened to her. (Sigh)
Tadpole - I hope you had a nice comeback for your close friend who should have known better. If she doesn't like it, you could always chalk it up to "chemo brain" or "getting older", as she put it - both of which aren't very nice comments coming from someone else. I can say I have chemo brain and am getting older, but I wouldn't appreciate someone else pointing that out in me. It was kind of snippy of her, don't you think?
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Will write more later...in the a.m. rush to get all off to school. Just need to sound off. Two of my adult children, in their 30's, have both picked now to have early mid-life crises - yep, just what I need with all the BC crap. I have not been totally honest with them about how advanced my disease is. I finally was, not all the way, but at least I let them know that X is my last resort before I "let nature take it's course". I don't mean to sound like I should be the main consideration for all as my children lead their lives - but my God, give me a break. My middle son lives in CO. I do not let him know much about my condition or how his brother and sister are driving me nuts! He just started a solar business and he is graduating from college in two weeks. I am not going to mess that up for him. Ok. enough ranting for now. Thanks to all of you for being here.
Hugs to all -
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I went to a club where I am a member this afternoon and as my hair is thinning and patchy from chemo I brought a Lille black fedora hat with gold beads to wear. I was relaxing playing the pokies when an older man cme up with glass of wine in hand and said" I realise you probably think you look smart or something or are trying to make a statement, but this is a club and you should show courtesy by not wearing a hat!" He was about o walk off having accomplished his belittling of me when I said in a loud voice " excuse me, I wear a hat because I have cancer!" He just studied me and was going to walk off so I repeated myself. He said in a gruff tone " well if that's the case I'm sorry" I told him how rude he was and I did not accept his apology and to leave me alone, but he was a bit drunk and wouldn't. I just kept repeating , go away you rude man and he did. A lady next to me was mortified and had pressed the button for help from staff. When I had to resell the story it opened the flood gates and I could not stop crying. Very embarrassing!
The female manager on duty had him evicted from the club which was very nice of her. She said he just didnt get it how rude he had been to me and kept saying " but I said I was sorry!" Apparently he had been banned previously for 4 months for upsetting someone , so I'm glad he was sent home, might give him something to think about. I am tired and washed out from it all, which was to have been a switch off for me to relax.0 -
Reality, what scan do you have to drink the berry smoothie crap for? It sounds awful.
I only have to drink slightly weird tasting water for my pet-ct and ct scans...0 -
Lordy, that was awful. I hope he is banned again. And - not for nothin - women have never been culturally responsible for removing hats. Only men "should" remove them indoors, which is also bollocks.
Still angry for you, and wish I could have given that horrid man a thorough verbal shellacking.
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Yes, superficial small talk can be annoying. I don't know if the nurses are hoping not to offend or call attention to the 'elephant in the room' which would be stage iv, or if they just want to glide through their day without too much trouble from any one patient.
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Latte - I have to drink 2 pts. - way to much of anything to drink, let alone berry smoothie! When I reach the middle of the second pt,, it often comes back up in my throat and I have to force it back down - sorry if this is too much info. - just reliving the misery of it and not looking forward to another CT in two months. In addition, I have to have an IV of contrast solution- my veins are shot, so that's always a challenge for the nursing staff. I have my CT done at a local hospital in my small town. The hospital has one CT scanner - our community was so excited when we finally got it. The next hospital is an hour away - a long, dangerous hour in winter weather. Anyway, my point is that although our hospital is trying, money limits how modern testing is. Maybe that has something to do with the berry crap. I have noticed that a lot of tests and procedures are done more efficiently in the hospital I had my lx in. (Vermont - 3 hrs. from my home). Fortunately, my onc., who practices and teaches at the VT. hospital, holds clinic at my hometown hosp. two days a week. (My onc dept is the only one at my hosp. that will use my port - the lab, radiology, outpt. surgery will not use patient ports).
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addition to my previous post....People often tell me that they would drive to VT to have everything done if they had cancer...I just nod my head and try to change the subject, as they do not have cancer and do not understand how difficult going through treatment is. Adding a 3 hr. drive, which includes an expensive ferry ride across Lake Champlain, (There is a way to go without taking ferry - but that way is really long!), is just one more pain in the a** thing to add to the stress of it all. I had to go to VT to have my lx. as my local hosp. does not have a breast surgeon. The VT hospital was great. I even stayed at the Hope Lodge, which is right next to the hosp. parking lot. But, after several trips to VT., I decided I have to try to do as much as possible at my local hospital - just one way to try to reduce some stress.
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The old saying opinions, advice... And a$$holes, everyone seems to have one!
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I was doing the same thing. Driving to Denver, about 2 hours away to Uni. Hospital. But in the winter, ugh, the bad weather made the trip at least 3 hours, or I would have to reschedule because I couldn't get there at all. And I have radiation next, 7 weeks. To drive to Denver every day for 7 weeks would put me so far in debt with gas prices right now. Not to mention how much time I would be spending in the car instead of with my kids this summer. I got a lot of flack from friends and family for having everything moved to our local cancer center. Told my mother, unless you are going to drive me everyday and pay for gas, shut it.
People always think they know what they would do in someone elses situation, but you never really know till you are there.
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Geez! I'll stop complaining about my 45 minute commute! Piece of cake by comparison!
Reality, I never drink the whole thing of what they give me for CAT scans...ever. They tell you to drink it all but they still get clear scans in my case with less than half of it...which is about what I drink. And when they come get me for the scan and see the volume of what's left..lthey don't so much as mention it even.0 -
Stormynyte - I know exactly what you mean! I did 7 wks. of rads. one-hour trip each way - sometimes 2 hrs. if weather was bad. My local hospital does not provide radiation treatments. The rad center has a van to take pts. from my local hospital, but the waiting list was weeks long! Yes, the driving expense and days on end of traveling caused extra stress I did not need. What really made it difficult was receiving a call when I was almost to the rad center, to be told I was rescheduled due to malfunction of machine - this happened to me 4 times in 7 weeks. It really made me wonder how safe the machine actually was!
I also have people tell me that they "would not take their dog" to our local hospital. Some even state that the hospital that is an hour away is useless, and that they would only go to VT. I agree with you - let them say that when they are the ones driving hours on end for treatment!
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Oh Jill - thanks so much for sharing! I am not going to finish the second one next time. No way. Thanks - I am not dreading it as much now.
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I'm about to start chemo next week and lose my hair (that has been growing back for the last two years so is really long now), and for some reason three people have found the need to tell me this week how nice and healthy my hair is looking.
And reality, at my ct scan this week, I started with really bad D after only drinking half the stuff, so I asked if I had to continue and they said no it should be fine! And it was...
I just answer "not for much longer".
What's with this focus on my hair....0 -
Latte,
So sorry about those comments. Sometimes coincidence is quite ironic! I hate to ask a silly question but what is this less than lovely drink you have before a CT? Some sort of trace substance? I only get PET scans so we get our tracer through IV injection.
Caryn0 -
That lovely drink, often called banana smoothie, or berry delight, is a suspended barium solution. These drinks are actually a step forward from when you had to add the barium to castor oil or some other nasty substence. I hate this drink with a passion and when I used to have CT scans, I brought ice with me to keep the second one cold. You can almost not taste the first one since it is highly chilled. My thought was, why taste the second?
*susan*
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The last time I had an abdominal CT in Jan, they made me drink the stuff, AND they gave me an injection. In the past, I've only ever gotten an injection. Hmmm...
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I've tried the banana and the berry and they taste the same, and there is no fruit flavor in that crud at all! Nice to know about only drinking part of it. What I've done the three times I've had to drink the ick was chug them both. I get them both gone in less than 5 minutes. Figure the faster I drink it the less time I have to taste it. Lol
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It is been 2 years out for me with my hair, I think it took that long for it to REALLY look decent again. DAMN, I hate losing my hair.
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What we drink here isn't thick at all, so even though it tastes bad it's not overwhelmingly difficult to drink. Where I get scans we get the option of fruit-flavored syrup, which makes it almost-sort of-maybe if you don't pay attention to it bearable. It doesn't taste like fruit but, then again, those syrups don't taste like fruit if they're mixed with water.
Latte, even if I drink the whole thing they don't take me until I start to have diarrhea - I think it's an indication that your whole digestive tract is coated. That might be why you didn't have to drink the while thing(she said jealously).
Leah
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Oh, I didn't realize that it's supposed to cause D. This was the first time that happened to me. And it lasted 3 days... Yuck...
And yes, the stuff I had to drink just tastes like weird water (I opted to skip the flavored syrup).0 -
I always think it tastes like perfume. Yuck.
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Thankfully I don't know what perfume tastes like 😃
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The last time I had a chest and abdominal CT scan I had to drink two bottles of the berry flavored liquid before my scan. I had a miserable time getting it down. I asked about it later and found out I was only supposed to drink one bottle. One lady described it as drinking Bath and Body lotion.
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