STEAM ROOM FOR ANGER
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I guess we'll see if I go stage 4 if I can plow through it or if I'll say no txs. I'd be worried if I were stage 3 b or c as they are the highest risk. I guess it's good that I don't stress about it. I'm sure being alone helps.
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runor, just making sure you are paying attention. I was trying to be all profound and you go there? No food?
I was going to add that our reactions fall on a continuum as well. More profoundness for you to scoff at.
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Cancer-the word itself brings up scary images, and after you had it the fear of reoccurrence is real. It is like a cloud that is always hanging over you, I keep telling myself that the sun does shine through the cloud and I can be happy where I am in life at this moment. .....That sounds really sappy, but some days sappy gets me through it.
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Jaycee, I sort of pay attention, when I'm not busy eating. ( gif of me spraying whipped cream straight from the can into my mouth). You know I think you're profound. In fact I count on it and worry when I don't see it.
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oh I'm so pissed! Again another Friday and DH is on his weekend and does he think of me and the fact that yesterday was chemo day??? NOOOOO Thanks to the steroid yesterday I finally made it to bed at 7am and was hoping to sleep until 10 when he had to head out for his dr appt and nooooo! my DD came in and woke me up to watch my 3 year granddaughter so DD could go to work. Did it ever cross his small feeble mind that maybe just maybe I'd like to sleep in a little like I have for the past 12 weeks??? Noooooo I guess it's just too much to ask that he THINK for once and do something so small,as to watch his grandbaby for 1 hour this morning.
Another thing bugging me for the past 2 hours he's like is there anything you want me to do?? Omg there's a million house things that are beneath him like emptying the dish washer... taking the kids outside to play on their swing set... vacuum the kitchen and bathroom floors... clean up HIS nasty sink... cook dinner.. go feed the chickens and ducks...put pine straw down in the hen house......No dear there's not a damned thing for you to help with (the list on the wall means nothing at all!) Maybe I wrote it in Chinese this morning....sigh
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Ah the old "you could be hit by a bus tomorrow" line, one of my favorites. I tell those people that the difference with Stage IV is that we can see the bus barreling down on us (some days more than others, esp with organ mets) but our feet are firmly encased in cement and there's nothing we can do about it. Truthfully there are days when I'd rather be hit by a bus that I don't see coming, but at least seeing the bus does give us a chance to "get our affairs in order" for what that's worth and live as well as possible until that time. I am sorry about your aunt bcincolorado.
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Nanette7fl, maybe you could make a list of regular things for your husband to do on a day when you feel up to it. It might help him and reduce some of your frustration. I'm convinced, after many years of marriage and also having a grown son, that guys honestly don't notice the same things as women. Heck, there's things I need lists for or I forget, that my hubby remembers.
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I agree with the list making for people who would want to help but feel unsure what they should do first. I am one of those people. I tend to wait for someone to make a suggestion so I know what to do for someone. The around the house stuff I did, but when my mother was sick, she told me what she needed. She knew I would want to help but also knew I needed a bit of a road map. That was helpful. Now that I am on my own, I know things I need to get done for myself which is good.
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Today is my one year anniversary of my BMX/DIEP surgery. I wasn’t expecting to have any thoughts or emotions about it. I have been in tears all day. If someone talks to me about anything I burst into tears. I feel a very dark heavy depression...and I am on really good meds for depression. I don’t know what is going on.
I have not had that “breakdown moment since cancer invaded my life. Maybe this is finally my time. I am so grieved.
My best friend took me down to St. Augustine to shop the boutiques and we had a wonderful lunch on a tree covered patio sipping white sangria. It is 85 degrees here and beautiful sunshine. I would think it would brighten my day but it didn’t.
Anyone else have this experience on a cancer/surgery anniversary day?
Barbara
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absofreakinglutely!!! Every year. Every single year for sure. No matter what I fall in that memory hole and I look up and around bent over at the Sky wondering , “is this where the dirt comes?” Is this where my legs really won’t allow me to climb out and shake off the dirt. And scurry back to my tear stained pillow and burrow into my covers and cry in silence, this happens a lot. You’re grieving that feeling of purity, that innocence of not even giving our mortality another thought because we are young and beautiful , or middle aged and ran like the wind and had no fat to even speak of. I end up hating being in beauty nature’s beauty because it’s another reminder of what I won’t be seeing once the light goes out. The mountains I’ll never see or climb. It’s surreal to feel this way. I get it. My friend. I get it. You’re not alone..0 -
I was stage 3b for 11 years and stage 4 for 2 1/2 yrs. I try to live by “ that day may come but it’s not today” .So that you don’t think I’m completely nuts I have some pretty dark days. 4 months ago I thought I wasn’t going to be able to walk and it was cancer. It wasn’t . It was lots of other stuff and an epidural helped a lot plus prednisone for asthma..not lung mets.
Bella the emotions come at very different times. This is not a made for TV movie. I fell completely apart 11 years ago when I put my prostheses in the wrong side of the bra and tried to put it on. Really?? Anniversaries in life are sometimes a chance for your mind to try to absorb hard times. I was b***y ever hear in June for about 2 years for no reason until I realized it was th anniversary of my moms death. As for cancerversaries. I go to the beach for that day.
Nanette you sound like I always do after prednisone. I hate that feeling. I calm down and realize DH will NEVER change after 45 years. DHs are clueless. A list is ok for the grocery store but everything else is “ your telling me what to do” Years ago I figured out that if I wanted him to paint I had to start the cutting in and he would be guilted it to follow with the roller. Too tired to try that now. I wish you luck and I feel your frustration. I have no advice. Just sending hugs and good wishes. Love your sense of humor...” written in Chinese “. I’ll have to try that on him with a grocery list.
I’m sick and tired of being the one with cancer. But today was the best when DH told me about a friend who has cancer. However “ they look awful and you don’t “. I’ll try harder to look sick. No one truly understands except those of us who have it. I lost a friend from my support group this week. When I saw her a month ago she looked good. So angry at how this cancer makes me feel. My kidneys are going south now. Which treatment caused that or is it just old age? Tune in next week for my next visit to the MO.
Maire
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Barbara - Exactly. For me sometimes it's little things like seeing the “after visit summary" paper that I get from my MO’s office (after each visit). I might find it stuffed away somewhere in my purse, and just happen to notice the words “breast neoplasm" and it hits me all over again, that this has been my reality since April 13, 2016.
Furthermore, for me, it's the months leading up to the day, of the cancerversary that I feel a lot more anxiety and depression, and a feeling of dread as it gets closer and closer to April.
Just know, you are not alone alone...
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I guess I'm strange. My Cancerversary is June 2, my mom's birthday. Every June 2 since I celebrate my mom's birthday and being another year out. In 2020 I'll be 5 years out. With my profile I plan on continuing tamoxifen for however long I can. In 2020 my bs will see me once a year instead of twice and mo twice a year if not sooner, of course assuming all is still well. At 5 years the chances of recurrence goes down which is where this 5 year thing comes from for ER+ Her2- folks. The risk of mets doesn't really go up or down even though you can help try to lessen the chances with exercise (up to 50%) and diet which leads to hopefully some weight loss. So I guess I look at it the other way, like milestones being passed and still ok. I've had my share of problems: multiple hospitalizations for infection, collapsed lungs 1 week into rads, pneumonia, and more surgery. But I guess what keeps me up is that fam doesn't know, which is the biggest relief ever except bro, and I've done it all by myself. There were days I was like screw it. These txs suck bad. But I forced myself to not cancel appts. I'm glad docs are seeing me less now. I love all mine as they are very caring as well, but the waiting room then in the room waiting is misery esp when I feel fine. So I can't change my situation. I can't change how someone may view it like a friend. But luckily I've wrapped my head around it to where what anyone says, and there have been doozies like staff, I just laugh because they don't know. If I think they want to know I'll fill them in so they won't say it to someone else. The meds I'm on make me tired all the times. Makes for better sleep but I don't have energy for fretting over what ifs. I did for my dad when we thought he could have PLS ,a slower form of ALS but was relieved it's not and most likely a stroke. He's a year in. He has a PT that comes to his home for not only PT but to work on his thinking. Dad knows he's plateaued. His left side sucks but he can still do some things independently and most important to him is at 80 he can still work. He's an engineer and would go nuts at home retired. Yes stroke isn't the same as cancer but once you've had one, the chances for another one goes way up. Anyway, got off track as usual but that's how I get by. I had issues come up so it wasn't smooth sailing. I'm high risk esp with my bmi but in my mind, it is what it is.
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I think the only reason I remember my surgery date is because it's an easy one, 7/11. I'm not up to a year yet, so I don't know how I'll feel, but I remember about a year after my hysterectomy, I just thought, "Oh, yeah, I had surgery around this time last year." I'm awful at marking dates as landmarks; I have to look up my hubby's birthday (and sometimes my son's!) and I usually forget our wedding anniversary. But I'm glad because it makes it very hard for me to obsess over dates with a negative connotation. I had to look up my parents' death dates recently, and mom passed just last year. But back to surgery, I'm lucky that I just needed that plus radiation plus Tamoxifen, so it's easier to think of it as being in the past, and not a current issue.
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Well, damn, Barbara!! I sure wish I had called you back tonight when I got your message. I thought you sounded pretty low but didn't realize you hit an anniversary date today. Last year when I hit my one year date, I thought I would be jumping for joy but instead, I pretty much cried all day. Now I am dreading that date again in May.
I'll call you tomorrow. We need to talk.
Hugs, Ann
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I don't know why, but I rarely broke down during treatment. One memorable time was when I had to have a second lumpectomy because the first pathology report showed DCIS in the margins. The surgeon had flipflopped that first lumpectomy with another patient without explanation or apology. For the initial surgery, I had to make it to the huge downtown hospital for my sentinel node biopsy by 7 AM so had left home well before dawn. I can usually deal with not eating if needed, but am always thirsty and need to pee constantly when nervous. (Thanks, Fibromyalgia!) It's amazing how time seemed interminable when stuck on the uncomfortable surgical bed hooked up to machines. Next surgery, also after being prepped and hooked up to machines, no water, etc., I learned the procedure would be postponed over 2 1/2 hours. My friend can't drive at night so I had to frantically find another ride home. Again, the surgeon offered no apology or explanation. when she finally arrived, she handed me my pathology report and I felt sick when I saw that it showed triple negative instead of the ER-HER2+ on my core needle biopsy report. She'd had the info for days, but thought handing me the report in person was a kindness. Maybe for some people, but I would have much preferred the news sooner via a call or office visit so I could absorb the diagnosis, do some research, make a list of questions. Next, the surgery was going to be so late that the front office was going to be closed. Also, the parking garage where I told my second friend to park. Since Friend #1 has to leave, I can't hand off my phone & the only rude nurse I ever encountered at that facility tells me they can't ensure it will be safe. THAT is when I blubbered like a baby. i would never resent the surgeon staying in the office to, say, work in a newly diagnosed patient and eventually, the problems got sorted out, but UGH! Way too much stress at an already difficult time.
I've found myself far more tearful the last couple of months. I lost my cherished dog, who was also my work partner. I read the study showing that delaying chemo (seroma infection, oral antibiotics, then PICC line, IV antibiotics) means my prognosis is significantly worse. After losing my career, life savings, employer matching for savings, nice retirement, etc., at only 41 years old, now at 64 years old, I'm losing a part-time job I loved. I made huge sacrifices for my career and education to escape the financial struggles my family always faced and here I am finding myself more freaked out at the idea of my air conditioner dying than the now 30% chance I'll die from cancer. Maybe it's just easier to live in denial of the latter vs. the "real" threat of a financial disaster?
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Jenkins, I'm glad that your director stepped up to apologize. I sometimes read where someone is offended by something that doesn't bother me, but I can't imagine anyone thinking what he did was acceptable behavior. My Fibromyalgia brain fog sometimes makes me say or do things I wouldn't in my "right mind" so I have to apologize. When he doubled down with the pretend coughing? Uh, NO!
Lyn
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Thank you sweet BCO sisters for sharing your cancerversary experiences. It helped me to not feel so isolated in that depressive state. Thank you also for the PM’s. It felt like angels were sent to deliver sweet encouraging messages to me.
I am feeling better. I don’t feel like I am sitting on the edge of an abyss. I can walk away from it and continue to live. Whew, I am relieved that Anniversary is history.
Blessings,
Barbara
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I'm glad you're feeling better, Barbara / Bella.
Lyn
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I can't get a return call from my oncologist's office. I called this morning telling them I am in pain and need help. No return phone call.
I called about another matter earlier this month; no return phone call then either.
I am wondering if I should make a complaint to the hospital's Customer Relations (complaint department) tomorrow. Is it the cancer center's policy not to return phone calls from Stage IV cancer patients or is it just too much to ask for? But even if I make a complaint, that doesn't help the pain, and I don't want to go to the ER for something that is not acute, but chronic cancer pain. I don't want to sit for hours in a room full of people with flu etc. The last time a family member had to go to the ER, it was a 14 hour wait, he literally had to wait over-night to the next day to see a doctor. That is the shitty healthcare we get in Canada. And I would imagine the ER doc would say, "why is your cancer center not helping you?" My answer would be "I don't know."
I mentioned this pain at my last appointment with my oncologist, at the end of the appointment to the nurse, and the doctor would not return to my examination room to address it, the nurse said, "we can address it at your next appointment (in a month)." Do they not realize that every minute in pain feels like an hour?
I hate my doctor, my cancer center, and most of all, shitty Canadian healthcare.
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Sorry you are dealing with that Amica. Sounds like either not enough doctors and too many patients to me. I would think you definitely should expect better care than that anywhere!!!!
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So I went to confirm an appointment online and this is new. I was prompted to update the redundant Medicare questions. And then it prompted me to confirm my new Medicare number. What? I thought this was supposed to be Confidential information. Is my new number carrying through out their computer system? And then I checked my latest statement and sure enough the numbers are there, not most of them x'd out like the SSN was. So I asked Medicare why they would go to so much trouble to provide us the new numbers, send emails to make sure we got the cards, and the instructions to keep this number to ourselves, and then not x them out on the statements. And I am told Congress voted to replace the use of our SSN as our Medicare Health Insurance number, but there was no law to x out the new numbers/letters. Unfortunately I lost their response when I tried to save the chat.
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marines:
My cable company prints my account number on every single advertisement they send along with my bill. Not quite as bad as a SSN or Medicare number but I still have to shred advertisements because of it
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Yes I bought a small shredder for that purpose, so much junk in the mail with our addresses, birthdates, what else do they need? It just gets me that we are supposed to guard our information against identity theft and Medicare Fraud, but everyone else can do what they want with it. I imagine getting a new Medicare Health Insurance card is probably just as difficult as getting a new SSN! And the problem with going paperless is there are times when your electronic medical records are not available due to computer failures and you just might be in the ER. There's a recent article on that.
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Not to mention typos that happen when a doctor or assistant is in a hurry inputting information. Always double check your dosage on your medication too. I've had an issue with DH pills before for that reason.
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I would like to be able to access my records directly and correct all the errors. Asking them makes them pissy.
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I can get most of my stuff online from primary and MO and lab work. If you want more though they charge you and that is not right.
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Neither of my surgeons has called or written me to make appts for a 1 yr follow-up. It'll be one year in April. While I honestly don't want to endure a mamm b/c my breasts still hurt SO much, I think they ought to at least be interested in how I'm doing. Kinda feels like they took the $$$$ and ran. Maybe that's not entirely fair, I don't know....but I'm hurting a lot still and sick of neuropathy & lymphedema and piles of medical bills/co-pays for oncology visits that do nothing ( although I really like my onc) and Lymphedema Therapy that seems to only provide relief for a few hours the day I have it; I'm sick of all of all of it. I'm pretty damn disgusted with family & friends who seem to think I'm "all better". I honestly don't want them to fawn over me or pity me but it'd sure be lovely if they could grasp I still need support. I feel like a different person now; I'm often bitchy and resentful and I keep trying to bury it and act like nothing's changed. Pain & Anastrozole put me through a deep depression that lasted for many months until I started taking Zinc to alleviate it. I'm tired all the damn time and I want my life back. Anybody else experiencing these things ???
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So far, I've had appointments set for me at the end of my previous appointment. I think once we're no longer on the 2, 3, or 4 month schedule, it's up to the patient to call for an appointment - at least that's how it's been for most doctors I've ever gone to. At the most, I might get an annual reminder card from a dentist or eye doctor, but it's up to me to make the appointment. The doctor might care, but their computer system doesn't.
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Medicare Health Insurance number replacement for SSN - Now that I think of it, it’s worse than displaying our credit card numbers online...
Phoenix I think it depends on where you go for your healthcare. I am being followed for five years, first years every 3 months, then two years every six months, now every year, with mammograms every year from here to eternity or when I’ve had enough. Whichever come first.
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