MIDDLE-AGED WOMEN 40-60ish
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i am so sorry, and i hate hate hate incompetence too
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justamy, let's review the facts: I mentioned that there was "too much talk about the weather." Your very next post went on to declare that it was 41 degrees in MO. I'm not saying you were trying to goad me, but the general statement that I had made apparently did not get through to you, so the next time around I wrote directly to you. In that post, now deleted, I believe I commiserated with you that talking about the weather probably did seem more desirable than sitting around in pain. (For me the experiences are very similar, but I understand your point.)
The mention of a painkiller was first brought into conversation by you. I kind of ran with it, in jest, which you then reported to BCO as a rules violation, which obviously must have been an even better distraction. The Mods subsequent deletions were ridiculous. I told them that was a big crock (of spreadable cheese!) by the way.
Since I have been supportive of you (even in an outreach kind of way that even the Mods know nothing of!) since you showed up on this thread, I can say that I DO think you over-reacted. Furthermore, if you are inferring that BCO is not a "safe place" because of what I wrote to you, that is also quite an over-reaction. BCO is a place you can say what you cannot say elsewhere; but, you know, since you can chat about the weather in so many places, why not just give it a rest here?
Honestly, and I'm not sure BCO will let me be honest, I don't really now how I feel about you continuing to post on this thread. Your reaction was alienating for me personally. You, and the Mods, in your efforts to slap a pair of horns on me, fail to consider any sensibilities that I might have. Am I supposed to forget that? I don't think I am chemo-brained enough for that to happen.
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In trying to reply to someone who sent me a PM of support, I found that BCO Mods have limited me to sending only 2 PMs a day. What's next, kicking me off BCO? Because justamy over-reacted, and started the snowball rolling. Thanks again, justamy! Further proof that BCO gets it all wrong when they try to hand out the halos and the horns.
Why just last night, a Mod was PMing about just what a valuable member of the community I was. Isn't that a funny way of showing it?
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Also, I did a little spying on you, justamy. I saw what you wrote on your surgery thread:
"I've had a strange day with BCO. I have posted here since DX in July. I have had 4 forums in my favorites that I have every post sent to my email do I can keep up. This is one of course. I have NEVER had a truly mean or hateful post directed at me ( I can't recall one at all). Until today. By a creator of a board. It basically told me they excused my ignorance because I was high on pain meds and then went on to instruct me that my content was too boring for their board etc....I reported it and it's being handled but I just can't believe it happened. Why would you create a board on a cancer support web site and then berate people? If you want a closed group....you can do that...I have deleted that board and will not be going there, but it just kinda hurt."
You went looking for sympathy, but the thing is that you perverted the truth, telling a half-truth. I never made any blanket statement about your content, just weather talk. Never took issue with a single thing you ever said OTHER than weather talk. Look how you put a false spin on it. Shameful! I am basically telling you right now that I am finding it hard to excuse these back-handed falsehoods. Stop it.
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Elimar you are now the one who is overreacting.Enough said.
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Maybe not enough said. I posted very carefully about what happened, not even mentioning the board w asked which one it was. You however reposted everything that happened immediately after it was removed and continued to belittle me there. I chose to let it drop. You are the one who is making this personal. I told you I was hurting. I was looking for support. That's all.
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Elimar, your private messaging limitation was automatic, and not a punishment. It has been corrected. We would greatly appreciate everyone dropping this issue, and moving forward - on all threads. It appears that a lot of things got misinterpreted, in all directions. So, let's try and work together to restore a helpful, supportive environment.
We try our best as Mods to resolve issues, and understand that our decisions can not be to everyone's liking.
Please observe the rules, and if you would like to discuss things with us, or have questions about our choices, feel free to PM us any time.
Many thanks,
The Mods
From our Rules of Conduct.
- You agree not to defame, abuse, harass, stalk, threaten or otherwise violate the legal rights of others, or participate in deliberate, repeated, hostile behavior ("cyber bullying"). You agree not to use words that intimidate, isolate, attack, accuse or degrade members.
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justamy, I write truth. You write falsehood. I present evidence of it. The Mods delete it. That does not change the falseness.
You maligned me in another thread. I defend myself from falsehoods.
What you call over-reacting, I call setting the record straight.
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Enough please. All subsequent posts pertaining to this dispute will be removed.
Please consider editing/removing your other posts that may have injured feelings. The cancer battle is difficult enough without feeling pain from BCO members.
Thank you.
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Breaking a rule now and again is just one of the ways I know I am truly alive. Yee-hah!
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I need some help from someone who has or is in my shoes. I have had 3 infusions of Zometa in the last 18 months. All were very painful for several weeks. The last one made my jaw and teeth hurt for over a month. I went to the dentist last week because I notice my teeth were shifting. X-rays revealed major bone loss. He said he can not save one because there is not enough bone to even cap it. I am so upset. I really like having teeth. Is there another drug like Zometa without this wonderful side effect. Seems I always get the weird shit.
On a brighter note my wonderful hubby took me away over the weekend for my birthday. Today we went with my son and daughter in law for their baby's ultra sound. I think we all agree that it is a boy even though the tech was told not to tell. We could pretty much see some boy parts.
Hope everyone is doing ok.
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D-rose, Zometa was never my bag (chemo bag that is.) What a distressing SE! Is a bone graft even possible? I know they do that for jaws, but it might just be prior to getting an implant tooth. Don't know if you have had a bone density scan recently, but in light of this news, maybe you want to see how the rest of your skeleton is faring?
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I won't know how I am doing for a few more days, having just had my MO visit today. My blood looked very juicy, like strawberry nectar, and there is just no way that something so luscious and pretty could have an elevated TM, is there? Really can't say I will have any weekend anxiety while waiting to hear results. I think they will be fine
The funny thing is that from the time I set foot in the MO;s office, I kind of felt some PTSD kick in. Kind of felt some extra adrenalin coursing thru' my veins and I had to suppress an urge to just RUN outta the place. Not that I would, but I could seriously feel the desire to flee.
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Somehting similar is happening to me elimar. where, i feel it in my body as something is wrong, and when i am near anyplace that might find it, i get a weird rush of blood in my veins, like my very blood is scared. i felt like it was alien blood, protecting itself from discovery.
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Elimar- seeing a specialist next month that does bone grafting. Does not sound like fun. I will be skipping the next infusion that I am scheduled for next month. Hope all your blood work s fine.
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Dianarose, blech! I am so sorry. I fear the same thing, which is why I have refused zometa and prolia so far. Do you have bone mets? With me they want to do it to treat my osteopenia/osteoporosis, and because they think it may prevent bone mets.
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Tomboy- Your concern about forgetfulness is really hitting home; my husband swears he has early Alzheimer's. He IS becoming more forgetful: lost keys are almost a daily occurrence, food left out on the counter that should be refrigerated, lack of ability to come up with words, not shutting off the gas cooktop (this one freaks me out), etc. But when he was "tested" he was told that he was fine. The test was to recall three words that were spoken a couple of minutes earlier in a conversation. He remembered two, and struggled with the third, but when prompted with clues remembered it. So he was told he was just suffering from normal aging.
This brings up the need to really be your own advocate and press for attention for what concerns you. JustAmy- If I were in the kind of pain you described, I would not have left that doctor's office without a script. I would have demanded that the doctor call one in (or the on call doctor or whomever)! I'm sure there was someone responsible for patient care available, and if not then they should be reported.
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Staynsane, that doesn't really sound like a very extensive test, at least in that novel still alice, they did a really very extensive sort of testing. It could be normal aging, but if it is worrying or concerning to your husband, then maybe he could get more extensive testing. Does it agitate him when it happens? In the book anyway, spposedly they test for a certain gene now. I don't know if thats true in real life...haven't looked it up yet, I better b4 i forget! Hoping that he is fine, and me too!
DianaRose, I am so sorry that that is happening to you.I hope they caught it fast, and can fix you, with not too much pain or anguish or trouble. I have been getting prolia shots for the same length of time as you, and that is one of the reasons that I am thinking about switching back to tamoxifen, except then I worry about clots. And I already have fibroids, and I don't want anymore cancer. I am so sick of it all. But that is awful, and I am so sorry that it happened to you. I wonder if the bone pain that you experienced was a major clue, that it wasn't the right thing for you? I wish they knew, and it could be avoided.
Elimar, hoping your juicy blood is just that, sweet and good.
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Momine-they are giving it to me to prevent bone mets.
Tomboy-I fear if I continue it will get worse. No good choices here. All sucks.
On a positive note- my kids great grandmother had breast cancer in her 70's. She just celebrated her 104th Birthday. She is one tough lady.
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Tomboy- I agree that my husband's initial Altzheimer's evaluation was laughable. It just cements the fact that if you suspect something is wrong/changing you really have to push to be thoroughly evaluated. He got the "there, there, you're fine" treatment. In the meantime, he still leaves the car door open, gas barbecue and stovetop "on" and forgets entire conversations we have. Ok, maybe he just isn't really listening to me, but his forgetfulness really does worry me sometimes when I have to travel. Even with notes that I leave right in front of him, he forgets to give the dogs their meds, or gives them off schedule, or the wrong ones to each dog. I find HIS pills on the floor and counter. I believe Alzheimers is one of the saddest diseases; losing your independence and not knowing loved ones (and realizing that you're losing it) is not easy on anyone. Not saying he has it, hoping he doesn't, but encouraging more thorough evaluation.
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Eli- Header "Cluster-Fork"...you crack me up!
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It is a sad one, and worrisome to their people. It might be a blessing for them, once it gets past a certain point, i don't know. I guess I thought it was something like a return to a more childlike state of being..I hope the scientists figure that one out, just as much as the one we are dealing with.
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liking the "cluster fork".
Alzheimer's is a very sad illness. My friend lost both of her in-laws to it and worries about her husband. Since both of his parents had it, the chances of him getting it are very high. She is definitely keeping an eye on him.
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Hey there middies,
There is some great progress with Alzheimer's: Discover (Science) Magazine, March, 2015 issue:
Two big developments:
1. Dr. Rudolph Tanzi @ Harvard was able to grow human brain cells from stem cells, then implant Alzheimer's genes into the neurons. The importance here is that Alzheimer's cells can be grown in a petri dish which is far cheaper and faster than having to do post-mortems on brains to do analysis. According to the article, this advancement is "paradigm shifting".
2. Dr. Ralph Nixon @ NYU was able to clone a rare protective gene that get this- even someone with two copies of the dreaded APOE4 gene don't seem to get the disease and even if they are in their 80's! The challenge is to learn how the (good) mutant gene works and devise a treatment that replicates the protection the mutant gene affords.
There are more juicy tidbits in the article by Linda Marsa.
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Great news!
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Mel - Both my parents retired from Disney and mom has a silver pass. My kids have been there so many times in their lives they aren't real interested in it anymore. I like to shop in Epcot though on occasion!
The 500 was actually a lot of fun! It's much better when you are there in person. I did go when I was about 20 years old with my future hubby, but hated it. I'm not a fan, but I was pulling for Jr to win!
The activities outside the racetrack were interesting too - a couple mobile bars, fan shops, free food, the Clydesdale horses etc.
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Results in. The first leg of my Follow-Up Triathalon (the MO visit) was a success...standard bloodwork unremarkable, TMs lowest of the low and staying the course; and my Vit. D was a respectable 68. (I supplement 5,000 IU somewhat regularly in the Winter, 2,000 IU when I remember it in the summer) My next event will be the CT scan, in a couple weeks. I'm feeling good, training, you know; and, for me, it will not be so much about mets because I just don't think I have any, but rather if my "fatty liver" has slimmed down any? My liver, the only place I seem to have extra poundage these days, did pass the metabolic profile with flying colors so I am anxiously awaiting to see how it is looking these days. Then, the final stage at the end of the month, will be OV with my CRC surgeon (not the robot!) where it is going to get up close and personal, and I don't mean a handshake. We are way past that. In the Baseball terminology of intimate contact, this is not "home base," this is probably more "locker room shower."
Any-hoo, kind of like having to run the gauntlet all in a month's time. Get it over and done with, at least til my summer event, the Mammo.
SnS, Alzheimer's (and you gave it the German pronunciation in your spelling!) is no fun and no laughing matter, but some of the daily things that my Grandfather would get into were kind of laughable, even as the person I knew just disappeared slowly. Sorry that, on top of BC, you now will get your "associate's degree" in that dread disease.
Deb2012, Thanks for sharing the timely info.
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Elimar,
So happy to read about your good diagnostics! It's amazing sometimes to see all the scientific knowledge about procedures, results, and disease that you keep "abreast of".
I think you merit being given a promotion. HRH (Her Royal Hiney). Your diagnostic results are so good, you may sport a tiara to mark the occasion. Perhaps you can find one on Google images and add it to your photos on this thread. And alert us to when HRH (you) gets to wear it!
Shoot, you could even buy one and wear it to your OV appointment! Say you've been annointed by your peers and have assumed shall we say..... the throne?
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Deb!! You are so funny!Elimar: congrats on the good results.
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Elimar, keep on passing!
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What's OV? Congrats, El, but i did want to MENTION that you said 'winter' and ahem 'summer' 2 times for summer. You might want to edit that before someone sees it and oh wait YOU are the one who doesnt like talking about the weather!!! Altho technically, you only named seasons...PHEW!!! That was close!
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