STEAM ROOM FOR ANGER
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Click on the last page. That should work.
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exbrnxgrl - It might have been one of my posts in trying to help Alice that corrupted the pages . I copied a block of text to start a new topic. Normally I would take a screenshot. 🙄
I assume mistake before corruption.
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If you’re still getting an error on the glitches thread, it may be that you’re getting sent to the first unread post on one of the corrupted pages. Here’s a link that should work :
https://community.breastcancer.org/forum/93/topics/787232?page=375#post_5750583
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We have zero intention of closing the community. We are working toward a MUCH improved platform, and fix. We're so sorry for everything you've experienced.
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Mods- When can we expect the "MUCH improved platform"???????????????
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Mods- you might keep a forum platform, but the lack of available information & support from our "sisters" is what has destroyed the site. Molliefish, a few hours ago was correct, BCO as we knew it is over. 2 months you've wasted our time and taken away our reason to come here. Your tech disaster became our problem and maybe we should just "let it go". If we are interested in 6 months, maybe some can restart....for those of us stage 4 that can seem too farout for help.
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Rant on family members who feel they just impose on you for everything even if you really do not feel up to doing the things you did before. They want to see you as you were and not as how you are and do not see how it is a struggle some days to get through the day.
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nopink2019 and all you other ladies, ever since this forum changed "for the better" I haven't been happy with it (an understatement) and now a data breech? I'm just catching up on the news...was sick with covid. Haven't been that sick in a very long time. Still don't feel good but am better. It's warmed up so at least Ican be outside. Idk if I want to stay on this forum
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Kid1919 - Real sorry to hear that you've been dealing with Covid. I got it too about a month ago, and only today, am I having what I would call a "normal" day. It has been almost a month for me! Hang in there, it does seem to finally get better. My case wasn't real bad, but it's been real persistent, and I'd had all the vaccinations, booster, wear a mask everywhere, and hardly go anywhere. It is no fun.
I also agree about the forum. I too have been here much less due to the abominable disaster it has become, and then the Covid. The data breach on top of the original mess; unbelievable. They really need to get some people up at the top who know what they are doing.
Again, wishing you all the best with your Covid recovery.
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Sunshine99:
Thank you Carol! The core issue seems that a lot of people, my friend included, tend towards denial when they are sick with cold like symptoms if the syptoms are mild or just beginning. My mother does this. All sore throats are because she slept with her mouth open facing the fan. But really, it has never been because of the fan.
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Exactly, wc3. Even if they said, "Hey, I'm probably OK, but I THINK I might be coming down with a little bug," you'd be able to take measures to further protect yourself - like staying away from them. I get the denial. I don't want to overblow every little symptom, but we - and especially you - need to stay hyper-aware of bugs that could kill us!
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Hate all the covid and the problems it is causing. We are trapped in our house due to immune issues. Go to doctor appointments and that is it pretty much. Masking and distancing anyway there. Cancer has taken so much from our lives already and and cna't even travel we feel. So sad.
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After my follow up the other day, I looked at the notes this morning. I learned that according to some scale my high risk of bc is 65%! Is that bad? I knew it was over 20% being high risk but this is the first time I've seen an actual number. It is what it is and not a darn thing I can do about it really. Hope to get back down the bay cottage this weekend to work and keep my mind off things. The 24th of May is 2 years since hubs passed. I took a vacation day for that.
Stay well and strong! Enjoy the weekend!
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Oh ctmb I know you miss him a lot.
virtual hugs. 0 -
I haven't been around for a while. I want everyone to know I appreciate you.
The past year has SUCKED for me.
I feel like my body is failing me. I am still recovering from breast cancer surgery in august 2021, then radiation in October, medication side effects from exemestane. Before surgery, there was some abnormality on an EKG, then a cardiac ultrasound. I was cleared for the surgery, but told to follow up with "my cardiologist" after surgery. SO - I had to get a referral to a cardiologist - then a stress test, showing an enlarged right ventricle, which led to a cardiac MRI, confirming there was a problem, which would need surgery. An angiogram showed no blockages, the first bit of good news. I have no heart disease, my blood pressure is normal.
SO - I have an atrial septal defect, (along with some other words about anomalous pulmonary vein return) and I am schedule to have open heart surgery next week. this is something I was born with, which was never diagnosed, and I haven't really had symptoms. But then I think back to the number of times I've been to doctors with vague feelings of being short of breath.
This has hit me hard. I feel so much like a PATIENT now - my days off work have been taken up with cancer doctors, heart tests, cardio doctors, that I don't have time for much else. My life has already become smaller because of cancer, and being afraid to get Covid, now I am a heart patient and I wonder what the future will bring.
My energy is zapped - is it the cancer? the cancer meds? the underlying heart problem? Or just being 66 years old? OR maybe it's because I rarely get enough sleep.
I am sadder than I've ever been before, but I hide it well. Because I have to.
i just had to get some of this off my chest. Oh yeah, my CHEST! HA! my lumpectomy included a "reduction and lift" so I have incisions which still hurt, one scar which is thickened and ropey, and now I will have a big scar to complement the other scars. From my collarbone to my waist, one big battleground.
Thanks for taking time to read my rant.
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tinkerbell, I am surprised you haven't used CAPITALS when recalling your horrid year. I am 66 too, I often compare my health status with friends to see whether it's age or cancer or meds , that is whittling away my physical abilities, many are developing their own health issues and are slowing down. I certainly don't function well without adequate sleep. Be proud that you are still working and if you feel angry or sad come back here and rant some more . I hope your surgery goes smoothly next week and you recover quickly.
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tinkerbell, that totally sucks! You've been through way too much!
(((hugs)))
Carol
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Aw, Tinkerbell, that's awful. When I had a pre-op chest CT before my lumpectomy four years ago, it showed both kidney cancer and an aortic aneurysm. I was MAD!!! I didn't want to know that! I had a nephrectomy to remove the kidney cancer, and I've seen a cardio-thoracic surgeon - so far it's watch and wait. I don't know if I'd have your courage to get mine repaired. I'll figure it out when it's big enough. I think you're smart to get it taken care of now so you can start healing.
If you need some good ripe swear words, I have a huge supply and you're welcome to some. Not all, though.
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Tinkerbell that stinks!! What a rotten development. Hope the surgery goes well.
Alice I might need to borrow some of those ripe swear words ha
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Aww tinkerbell. It is awful to have to go through this as well but also glad they found it as well since it might be something they can fix and be done. You hear about people all the time born with heart stuff that goes undiagnosed and then just keel over all of a sudden and everyone is shocked. We are all here to support you.
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Threetree, thank you for your good wishes. Covid is going around this area like crazy. Husband has it now. I am feeling better but u are right... I think its going to take quite awhile to feel back to normal.
Tinkerbell, Jeesh! Hoping all goes well with your surgery
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Tinkerbell- What a terrible time you've been having! I can only pray that the heart surgery will resolve that issue, at least, and you will start to settle into a maintenance routine for the bc. Sending gentle cyberhugs your way.
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exbrnxgrl - read your post on the alternative meds forum, but thought this was a more appropriate place for my post. Love your reference to being an outlier. You have so much experience and explain things so well. Congrats on your continued non-progression. I get a lot out of reading your posts. Keep talking to us.
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thank you nopink. As the years go by, I feel increasingly irrelevant here. Old school tx and, except for one life threatening complication, I’ve have an easy time compared to most. I even like my medical team, though my long time mo had the nerve to move back to her home country 😉. I did recently experience a terrible coverage snafu with Medicare blaming my providers and my providers blaming Medicare. It appears to be resolved but it hurts my head to think about it.
You know that I also feel helpless. My fondest wish is to figure out why I have done so well. Then I wouldn’t feel so helpless and irrelevant here. I should also say that I am struggling more emotionally now than I was at dx over 10 years ago. I just see a giant clock always ticking down. It looks just like the clock of the time dragon from the set of Wicked. I know many are thinking, Oh, shut up and be grateful, but on the spectrum of feelings experienced by mbc patients, I think my feelings and circumstances are as valid as any.
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exbrnxgrl - you most definitely are not irrelevant here. Please keep posting as your insight and experience are valued. I’m sorry to hear about your emotional struggles but do understand the reasoning behind it. (((Hugs))).
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My husband has BC/BS through his job. Thankfully I’m covered with that and Medicare as a secondary. When I was scheduled for 33 radiation treatments in 2011 we had already me our deductible months before. Thank God because we didn’t have $20-30k for those treatments.
People don’t understand or don’t care to understand that a BC DX includes treatment plans that can be very expensive but needed to save their lives. Ditto with meds.
Diane
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exbrnxgrl-I always enjoy your posts-even when we have different viewpoints, I enjoy learning yours so I hope you keep posting. I hear you about that Big Clock ticking. Last week I went to a Zoom writing retreat with other women in their sixties and early seventies. We would get a prompt and then write for 10 minutes or so, then another prompt. For some reason, the exercises took each of us to a very sobering place. I wasn't expecting this at all-but it was a couple of hours of having to look clearly at my mortality and changes that may be coming to my life as I age. I think I was the only one with cancer but all of us were taken to this fairly dark place. The leader this didn't happen with another group she led a few weeks ago with the same prompts. I'm still glad I went-I think there were things I needed to look at that I may have been avoiding. So I am wondering for you if it is the cancer or mortality in general? Probably the cancer-before I had this I assumed I would live to my mid-nineties based on my relatives. I've known quite a few people who have died recently so that also contributes to the feeling of doom. One friend was just 57. I appreciate you sharing your thoughts and feelings. Most of the time I forget I have cancer-but I think after breaking my leg I feel much less invincible and more aware of the fragility of life.
edwards750-BC certainly can be expensive. I feel fortunate b/c my insurance has a cap on out of pocket expenses each year.
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Cyberhugs, and appreciation for all!
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Thanks for the support, everyone.
Denny10 - Yes, 66 seems to be the age where a lot of people begin to think of themselves as "old." Only a few years ago, I would say I felt younger than my age, and assumed I would live a long life, like many in my family. Now, I feel I am facing my mortality, and need to think about the things I want to do "before it's too late."
sunshine99 - thank you for the virtual hug. Funny how a stranger, reading words online and saying they care, makes a difference. But it does.
alicebastable - Wow, you have been through a LOT. I had considered waiting a little while to have the surgery, but once two doctors said this could cause heart failure, the anxiety and the hypervigilance are just too much to contend with.
rah2464 , bcincolorado, kidi919, seeq, and everyone else - thanks for the well wishes. for the last several weeks my main concern has been staying safe from COVID, as that could interfere with my surgery schedule.
I do OK most days, but at night, it hits me - they are going to open up my chest and fix my HEART - and I"m just so sad about it. I know this forum is for cancer, not heart problems, but when I look up atrial septal defect, I find a lot of support for parents of infants with the condition. so thanks again. It helps just to type this out, and know that people care.
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exbrnxgrl, I understand how you feel. My breast cancer was stage one, but so were the endometrial, skin, and kidney cancers. Do I count them as one big ol' giant stage one? Do I add them? Multiply them? Find their square root? Add in an aneurysm, and I don't know if I'm living under a huge thundercloud or if I'm the world's biggest hypochondriac.
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