STEAM ROOM FOR ANGER
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All those horrible people thriving, and I learned this morning that a young woman in the FB kidney cancer group I'm in has died. She was just in her 30s with teenage daughters, and I think she was a teacher - in one of her fairly recent posts, she was wondering if she should conduct class online from the hospital.
Once again, and too many times, fuck cancer.
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bcincolorado, thank you. I agree. We were so different. He would pretty much torture me when we were little, tickle me until I cried, put me in wrestling moves. I was the youngest of five. He is a little on the strange side. Even though I wasn’t talking to him, when I got my cancer diagnosis, he told my sister to tell me to eat keto. Lol
KIDI919, I don’t understand how people can do that to anyone, let alone their parent. I’m sorry.
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For me it was the 2 of us and I am the oldest and responsible one. He is the moron. Borrowed a ton of money from my mom who loaned it to him so they did not get foreclosed on. After her mom died and they sold her house they had the money to pay her back but he said it was "her money" and seemed to forget about my mom. He seems clueless that she is living on SS right now and could use that money. Even make payments. She changed her will and cut him out of any insurance she has. He lives in another State and does not call and if he sends cards for birthdays they are VERY late in coming even. What an idiot. How were even raised the same? Makes me sad though on a lot of levels since I know it is hurtful for my mom.
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KID, another sister-in-law of mine had a niece who lived a troubled, fast-paced, self-centered life and used sil's grandmother as a bank, taking her for all she was worth, her savings, her house, cars, etc. No one in their family could talk sense into the grandmother who defended the troubled young woman till her dying day, never seeing the true picture. How does one person manage to bamboozle another person like that?
Alice, I'm so sorry about the young teacher in your other group who passed of kidney cancer. It sucks.
KBL and everyone else, thank you again for your kind words about the cruel jabs my sil tries to make at me. Now when I have to tolerate her presence, I will be buoyed by keeping all of your support in mind.
Reading (and contributing to) these stories about siblings and in-laws makes me think some people are only content when they are creating conflict. It's bizarre. As I get older, I'm learning to steer clear of them more often, tho sometimes it's unavoidable.
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I decided some time ago that certain family members are partially invisible. When I need to, I can look right through and past them like they don't exist. If they act reasonable, I'm willing to squint and put them into focus. Their choice.
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bcincolorado, I have always noticed with most that if you have a good child, the next will be much more work, putting it nicely. I had the great child first and put the brakes on. I wasn’t about to try again, knowing the next one would probably be rough. And I hated arguing, so I wouldn’t have been able to take two children going at it. Seems there is more than not a tough child in families.
Divine, I hope you can look at her with different eyes and know it’s her problem and not yours.
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Social media is making it easier for people to connect. This is not a plus when I've been avoiding my father for years. It's for my own mental health that I've done this. He's injected himself into a family group chat with all his drama, and it's brought back some internal turmoil. I've had to pull back again.
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Are we ready for another cancer cure? Monkchella. 😁
There's a new series called The Lost Symbol. In the first episode one of the characters is looking at "live imaging" of a monk's chemo-resistant cancer cells being sung to sleep by the monks chanting. Unfortunately, her research will have to be put on hold while she searches for her kidnapped father. Oh, well. ☹️
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My head just exploded a little, trying to laugh and scream simultaneously.
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Monkchella! 🤣
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Before anyone gets too comfy on the bashing of those who claim to represent God train I do want to point out while I've had those claiming to speak from God say hurtful/crazy things to me. The most hurtful/out of left field thing anybody has ever said to me relating to cancer was from those who are 'anti-God' against God - not sure how else to say that. I took place in debates and discussions with atheists and agnostics for years, almost a decade. I was one of a few voices of those who are christian who took part in them. During one discussion someone just blurted out to me "I hope you die of cancer!!" straight in my direction out of nowhere because I wouldn't back down from my argument on the existence of God. Fast forward a few years and I ended up with a diagnosis of cancer and subsequent progression to Stage IV. While some of those who participated who found out about what happened with me where saddened, others devastated, the very one who blurted it out along with a few others laughed and basically cheered..."One less of those conservative Christians on this earth! Ha! Ha!" My curse worked!". According to them I was a worshiper of a magic Jew and an ancient goatherder book and one less of people like me was a benefit to society. Cruelest thing I've dealt with to date. I still think about it often. Not that I think any incantation of theirs did anything, but anyone taking that much glee or enjoyment over someone else going to die of a horrible disease because they believe different...I dunno...I cannot wrap my head around that knowing what I know about this disease. I wouldn't wish it on my worst enemy...ever. End Rant.
As far as family's concerned, I've learned through this cancer mess so many have broken families. Was always jealous of big families growing up - even presently. With a mom and dad, lots of siblings, lots of extended relatives. Maybe that pretty picture of families all gathered around a nice meal during the holidays we see in magazines is just an illusion...or a wish, I know its always been mine.
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Rabbit, that's horrible. Who would even think that, much less say it out loud to you? Wow! Even when you know it's crazy, it still hurts to have that said to you. I don't get it. I'm so sorry.
Thank you, as always, for sharing.
Carol
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Rabbit - There are terrible people everywhere. As for the dream family gatherings, I didn't experience it growing up. We often went to other homes for the holidays. During college I worked holidays to avoid going back to my parents. Since then I've had the big family gatherings with my husband's family. They've been good, but there are always little issues. My kids have 4 grandfathers and 3 grandmothers. That's fun. 😒
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Sunshine/Serenity - Yeah, it sucked to hear it for sure. Hurt. But I guess ultimately its not about them, or their comments to me or my God. Its about how I represent my God in the midst of the offense and being offended. Turning the other cheek you could say. I want to preface I'm not saint by any means at all. My thoughts weren't entirely pure at onset, and the phrase 'I hope a fleet enema finds you' did flit across my cranium in response to what they said. I didn't retaliate in word or deed even tho I wanted to. Overtime in my thought life I learned/am learning to extend grace, even undeserving grace. That is the hardest thing ever to do.
PS My rant was merely to bring attention that crazy and hurtful can manifest anywhere.
Serenity - I admit I had to do a little mental gymnastics with your next to last sentence, lol. I got to experience a bit of the dream get together stuff with beloved's side of the family but once the niece and nephews grew up get togethers got less and have gotten less frequent. Truth be told while a lot of the adults where chatting amongst themselves downstairs beloved and I were upstairs in the loft playing video games, legos or board games with the kids until it was time to gather around the table. I miss those times. I don't want to even get in to my side of the family. I guess being spared dysfunction can be a blessing in disguise too.
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Rabbit - It's from my husband's side. His dad is married to wife #2. His mom is married to husband #3. 😁
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While I don’t wish anyone any strife, I must admit that it’s nice to hear stories of others with dysfunction in their families. Let’s just say, we’re not the Cleavers. My oldest brother was a total shit growing up - stealing, always in debt, took drugs, etc. He caused my parents no end of angst. They were continuously bailing him out even though they didn’t have much to spare - we didn’t have much when I grew up And yet, when he finally got his act together, he decided he didn’t want to have anything to do with my mother. Seriously? It’s so sad and hurtful for my mom. Bet he’ll be at the front of the line to find out how much of her estate he gets….
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Rabbit, I too am sorry for what was said to you. I am astounded by how cruel some can be.
We had get-togethers for the holidays with my family growing up. I had my mom and dad and four siblings. I always thought they were the most boring because everything used to be closed on the holiday. I hated that. Later, after I was married,we usually went to my husband’s family get-together for one holiday and my side for another. I still hated them. I’m not a big get-together type of person.
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I have a dear friend I've known since jr. high school and we still email even though we live in different States. She said when COVID hit it was not a big deal for them since they do not like to go anywhere anyway and stay to themselves all the time anyway. Had to laugh since we are the same way. Miss grandkids coming over since school is going and they are not at home alone in quarantine now but other then that we are "happy at home".
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Rabbit: I was so shocked to read what that person said to you. That level of cruelty is astonishing. One has to ask "What the Hell are her issues that she says stuff like that to make herself feel better?" Gratuitous nastiness.
Families. One of my older sister thought we lived on Beaver Cleaver's street. The one closest to me in age thought we were living in some cold, unloving Emily Bronte novel. I thought it was a little of both so I must be the one who is right. Ha hah. It was a loving family, but my father was a bit of a stuffed shirt, a tad strict (he was a Colonel in the army) and had come from a family of just sisters, got four daughters and really didn't know what do do with all those females around him. There was no question he loved us. Mom was really warm. As siblings we did the usual siblings things of kicking each other under the table, assigning blame on the other, poking each other with forks while doing dishes but none of us ever ended up in jail, stealing money from the parents or fighting over an estate. . We are fast friends now and none of us ended our first marriages. I am the youngest and I am hitting 50 years together. I guess I am incredibly lucky. We moved a lot because of the military and that was hard but the unit remained stable and it was a pretty nice middle class life. There was no "dys" in our function. I am sorry that so many of you have had a hard time. It must be heart breaking and maddening.
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HI, lest you think I lived in a "Disney Family Movie --- not exactly. My mother died when I was 18 and the same year my father relocated to the UK. As we moved with the military my older sisters were getting married and staying behind. So by the time I was 20, I was in Vancouver, I had a sister in Quebec, a sister in Ontario and a sister in the Interior of BC. There were no family get togethers like Christmas. We grew a little distant from each other but with no ill will. I suppose it saved us from some of the sturm und drang of family life. Fast forward 30 years and we are all in various parts of BC. But our get togethers are still only yearly. Maybe that is what keeps our relationship convivial. There are emails, phone calls and Skype. My eldest sister died in 2019 a week after our annual Fall get together. Then came the pandemic. I don't think I have fully come to terms with her loss. She was a terrible correspondent and it could months before I would get an email or call from her. When we finally get our sisters' sleep over I know I will be waiting for Fran to come through the door.
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Jumping in here to rant.
Does anyone else's cancer center seem to drop the ball on almost everything? I've been scheduled to see the Dr. when she's at a different location, so first i get my labs, then I'm supposed to drive across town to see her, then come back and do treatment? They offer me a tele health visit and don't offer me a place to take the call? They NEVER respond to my messages through the portal. They schedule my visits without calling me and asking what day would be best, it just appears in mychart? The schedulers take 2-3 days to call back maybe, or else they just reschedule and don't call and I have to figure it out by logging in? They take weeks to fill out a simple disability form? They don't respond to numerous requests for refills from the pharmacy? Then they are short with me on the phone when I try to advocate for myself? Am I not being understanding enough? Last I checked pay them...ALOT. not the other way around.
I love my Dr. and the oncology nurses, but everything else there seems like mess. I'm thinking of finding a new place, but I am comfortable here and with the Dr. I'm just tired. I don't need to be on the phone half the day about a much needed mail-order refill and rescheduling and then be given attitude by the front desk. I just don't need it.
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your anger and frustration are justified. You have reasonable expectations which are not being met. I can see why you want to leave the practice but I also understand how important your comfort with and confidence in your doctor is. Have you spoken with your doctor about this yet? Perhaps you should document all you have stated above - with when if possible and how many times these problems have occurred. This doesn't sound like one person, it sounds like a poorly organized office with poor (as in not patient focused!) or no protocols and staff just making it up as they go along. Your document could and should be a guide to improving the office interaction with patients.
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Kikomoon,
Your post struck a chord with me as I'm currently dealing with some frustration with my cancer center. Problem number one is that my MO is on sabbatical until February. I've not been that impressed with the new guy, left me hanging for almost three weeks waiting to talk to him after my last CT. (I knew by the way I was feeling that the liver mets were spreading again..) Then it was another two weeks until I started my latest treatment (Vinorelbine). I had no real issues after the first infusion (some diarrhea on day one but no nausea) but then after a few days I started having abdominal pain and discomfort. It's quite diffuse so it's been hard to figure out if it's the stomach, the intestines, or both. It's been getting worse, radiates into my back, to the point that I am having trouble sitting at times and eating causes increased pain (particularly a large meal). What confuses me is that it started five days after the infusion and nothing seems to be helping (tried Imodium, Pepto, a drug for acid reflux/ulcers, GasX - only Tramacet dulled things a bit). This doesn't seem right...
Called the Cancer Agency nurse line on Thursday. Nurse thought it sounded like intestinal. No real suggestions other than possibly cutting down on the next dose of chemo. Friday chemo and told the chemo nurse all the same story. Weekend getting even worse so called the Cancer Agency again today. Nurse suggests I take anti-nausea meds and indicates I will speak to the doctor before my next chemo. Seriously? At this point I'm worried that something else is going on but she translated that as I think it's mets. Um no but maybe we need to investigate why this is happening. She talks to the stand in MO who says he thinks it's side effects from the chemo and agrees, try nausea meds. OMG!!!
The biggest issue is that, since COVID, they are rarely seeing patients in person. I have not seen an oncologist in person since January 2020. This is ridiculous. How in the world can they make a definitive diagnosis based on phone calls? I feel like asking them if they would like me to see my GP and then he can patch them in while he examines me. And ultimately, I'm going to need to make a decision about treatment not knowing what is causing the problems. I don't want to cross anything off the list as I'm getting low on options but I don't know that I can stand six months of this hell.... arghh!
Rant over...
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sadiesservant, I'm sorry you're feeling so badly. I agree you should be seen. Fwiw, I've been having in person appointments all through the pandemic at BCCA Fraser Valley. Partly because I was in a clinical trial at the beginning but even later, they just kept me with in person appointments. Each time I've had a physical exam - lungs auscultated, liver palpated, checking for edema etc.
You should be examined to find the source of the pain. I mean it could be something different. The differential diagnosis list for abdo pain is very long.... if you don't have nausea and you're passing normal stool, then what is causing the pain/?
Can you force the issue by asking for an in person appointment with the oncologist for tomorrow?
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Jelson, thank you for responding. I just feel like no one is hearing me! I know they are busy but the meds were approved by insurance weeks ago so, the pharmacy even sent me letter today that they haven’t been able to get anyone to respond. I feel like someone just needs to open an app on a computer and click twice and it’s just not getting done, and I’m the ass for calling! I feel like if I make a list of inadequacies they might hold it against me somehow and it will get worse. Kind of like how you don’t want to say anything about the food or service for fear they will spit in your food! Is that crazy or what.
Sadieservant, I’m so sosorry you are having to deal with that! They really need to see you. I would definitely go to the GP to check it out if the MO won’t see you! So frustrating that they aren’t hearing you.
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Thanks Moth. Today I have some nausea but really not much and yes, the bowels are still working! Thanks also for confirming my thoughts on diagnosing abdominal issues. If I don't say the right thing, and the nurse doesn't interpret me correctly... I just feel there comes a point when an exam is in order.
Tomorrow I am having my port insertion and then we will see how it goes. The one positive out of today is that it won't sideline the port. It takes a while to get an appointment and I know I will need one. I wonder if I can talk nice to the surgeon and have him just swing me by the CT room on the way back to recovery... ;-) Just one quick picture of the abdomen... LOL.
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KikoMoon - can you make a set of 4-6 appointments ahead when you are there for a treatment? My doc's office let me do that. Also I asked for hand written prescriptions so I physically had them.
Sadie - good luck with the port tomorrow. Maybe you can get a "drive by" CT.
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I hope I outlive my vampire mother in law. I hope everyone else here does too. Mine is such a bitch.
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kikomoon if your MO office is like mine they are running at about 1/2 staff and people are working remote from home because of COVID. They are trying to limit how many people are in the office at at a time or who you have to contact with as a cancer patient. Makes it hard though when you are trying to get things done when people are not there and then you are waiting. And waiting.........waiting sometimes.
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I just need to scream this out.
This Breast Cancer Awareness thing SUCKS Everybody keeps saying "test regularly, get screened" and then people assume if you have adv cancer its your fault for not taking care of yourself. "What happened, don't you get screened regularly?" Stage 4 happened. I had my mammogram 18 months apart. My age has some guideline yearly, some everybody years.
Cancer sucks and acting like it's my fault sucks worse. And thanks for your helpful wishes, but no, I'm not going to get better soon, or anytime.
I know you all understand
This forum stresses me a lot, so I cant use it often, but thank you for listening.
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