STEAM ROOM FOR ANGER
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runor,
I am not religious, in the observant sense, but do identify strongly with a non-Christian religion. I think those who believe that their religious beliefs are the only “true” religion are arrogant and narrow minded. I once told someone who wanted to offer prayers for me (Christian) that I was not Christian. She then offered to pray for my salvation because she didn’t want to see me burn in hell. When I told her that my religion did not really believe in hell nor proselytizing, she seemed truly shocked and ended our conversation.
I don’t think anyone is intentionally trying to hurt people when they say stuff like that but that doesn’t make it less annoying or hurtful.
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Exbrnxgrl, I agree. I do not think there was intentional malice in her words, which is maybe why I was able to bite my tongue. Boy, was there a lot of biting!! But still, as EDJ3 said wow, just wow.
Mountain Mia nailed it when she said these things are not planned. I believe that. With my 2017 breast cancer I did NOT say, why me? In fact I said, why not me? I am no more worthy of a disease free life than anyone else and this shitty luck just happened to randomly fall on me for no known reason. The same arbitrary life insanity that we are all subject to. The luck of the draw, the roll of the dice. The very idea that someone is planning this shit is an insult and probably pisses off all the gods. (they really need to get their PR people on this right away!)
The game never ends when your whole world depends on the turn of a friendly card....., said who? No Googling!
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I’m really tired, have been working all day (employment work not fun around the house work) but wanted to contribute. I have, for a long time, been a non believer in religious affiliations and not a believer in the Holy Spirit, though a strong believer in the Human Spirit. I am currently completing my ps degree online and my studies are rooted in Indigenous studies in North America. I find that my studies validate my previous conclusions and convictions. We have a long way to go and much to learn. Love to all, be happy be well, xoxo
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Jaycee 49, Hope you are starting to recover. I don't think there has been enough time to see what affect the vaccine has on people with certain conditions. I'm pretty sure the volunteer groups were healthy people. Sometimes I feel we are all stumbling along in the dark. Btw SIL is home but exhausted.
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Jaycee, you are not the only person w/ an autoimmune disease I've heard of having a really bad reaction to the vaccine. I have a direct report who's got really bad rheumatoid arthritis, she's had it since she was 16 and hers is pretty resistant to most of the drugs any more.
Two weeks after her second vaccine, she got shingles and a staph infection--she's in her 30s so too young for the shingles vaccine. It's been awful for her and all I can do is encourage her to take the time she needs for her doctor appointments and to rest.
I hope your recovery is quick and complete and your MS settles down.
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I also have several autoimmune disorders. Currently the one giving me grief is my chronic hives. I have been unable to get rid of them completely since my covid vaccines (Pfizer). I am on Plaquenil, high dose zyrtec, and extra strength pepcid ac for them but have had to take prednisone for months due to the massive flare. I managed to wean myself off the prednisone but am still breaking out daily. I see my immunologist in May and hope to get additional insight. While it is a bit maddening, I do not regret getting the vaccine at all. However, I have massive sympathy for everyone with autoimmune disorders that is dealing with flares due to the vaccines.
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I'm checking in after being away for a few days.. runor, I'm so sorry you had to listen to this "well-intentioned" person. It's hard to understand how people can think they're helping when they say stuff like that. Enough has been said above, so I won't rant here. Cancer sucks, plain and simple!
Am anxiously awaiting the results of your procedure.
(((hugs)))
Carol
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I just called doc's office. I said, "do you know what days Doc makes patient result phone calls so I will be sure to be at my phone on that day and time?"
I hear papers being shuffled. Receptionist says, "I have you booked for a follow up on May 21."
I say, " let me understand this. I had a biopsy on April 20 and I will wait until May 21 to hear if I have cancer or not?"
Yup. As it stands now I wait a FUCKING MONTH for fucking results !!! This is fucking bullshit! Goddamned torture, that's what it is ! Jayzuz keeeriste!
And if anyone tells me not to kick shit on the Canadian Health Careless system I say stand back because I'm lacing up the steel toe and aiming at someone's ass. I'm so done.
I will just keep checking my portal and see if the pathology shows up there first. I feel like every nerve in my body has been dragged down the road behind a truck, raw in every way , battered and bloody. I'm going outside to light shit on fire.
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That is terrible. I cannot imagine being treated that way and would be furious too. If you have any way to get to get a message to your doctor or get your results yourself I sure would be checking on it.
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Rumor, I had about a month wait between a biopsy and follow-up in the U.S. when a post-nephrectomy PET scan showed a suspicious area. Yeah, it sucks. I spent as much time as possible doing fun stuff because that month was going to pass either way, so I might as well control how I spent it.
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oh my, Runor, that’s too long to wait. I would pester the heck out of the doctor’s office until they called me with the results.
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One of my kids is working on an ICU ward. It's essentially all covid. We have young people on vents. There's an ECMO waitlist. A 13yo kid in Ontario died of covid. 1750 surgeries in Greater Vancouver have been postponed. You better not get in a car accident or have a heart attack now because where the heck are the hospitals going to put you?
I'm so angry at the federal and provincial govt's for totally botching covid response. We had a window of opportunity to get & keep things under control, we were so close! But no, greed and whiny bastards who wanted to go to bars and restaurants got the better of them and people fucked around for spring break & now we're swamped. If I see an anti-masker or a person who goes on & on about how much we "overreacted" I swear I will beat them with a hockey stick (to maintain my 6ft distance)
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Even when you are vaccinated they are saying there can be some "break through" cases even through rare. How many of us were considered "rare" when we were diagnosed with cancer? I sure was. No family history. Routing check up. Wham! That is why even though vaccinated we still stay home.
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I was, in a sense, rare as I was de novo stage IV. There will always be rare cases and exceptions but by and large most of us have “typical” breast cancers though we do have our unicorns. Ido want to point out that family history , when backed by genetic testing is the rare case not the opposite, i.e. No family history is very, very common. As for the COVID vaccines, yes there are unknowns and I would venture to guess that there may be some unanticipated side effects. However, the pandemic is a worldwide emergency which doesn’t give us the luxury of long term studies. The imminent dangers of Covid19 outweigh what appear to be minimal risk to most (not everyone). Remember, these vaccines were not produced from scratch. There were existing technologies and knowledge of other Corona viruses involved that were reworked to be effective against Covid19.
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runor, aim the steel toe at your doctor's ass. Or better yet, aim it in the same vicinity on his front side. The fault lies 100% with your doctor. It has nothing to do with the Canadian healthcare system - and you know that. I'm in the Canadian healthcare system too, and when I had a CT scan recently for something that had about 50/50 odds of being cancer, the MO (who is new to me because I've been moved to a cancer clinic for patients not in active treatment) personally called me with about 48 hours. And while the patient portal at this hospital waits two weeks before posting imaging results (to give the doctor time time to speak to the patient, I suppose), the MO authorized the release of the report immediately and it was available to me on the portal as soon as I hung up the phone. That was good service... and it was because of the doctor, and has nothing to do with the Canadian medical system. Just like your bad service has nothing to do with the system.
Your doctor's response is unacceptable. Why are you unwilling to put the blame on your doctor? Blaming a "system" means that you hold no one individual responsible and it also means that change is virtually impossible. Blaming an individual more directly addresses the issue.
Can you call the admin side of the portal to find out how long it takes for results to be posted? At my treating hospital (different than where I now see the MO) I did that with my breast surgical pathology because it seemed to take forever (about 2 weeks). What I found out was that the report was not yet issued because it was awaiting the second / final sign off (it was not being held up by my doctor, as I'd wondered about). And I was told that results would be posted as soon as available and that I would receive notification at exactly the same time as my surgeon and MO. Every patient portal is set up with their own rules. Find out the rules for your's. Hopefully the results will be released shortly but if results are held until your doctor gives the okay, go to your doctor's office and in front of everyone waiting, raise hell and refuse to leave until the portal is given the okay to release the results or you are handed a hard copy of the results.
moth, I am with you 100% about the mess the feds and provincial governments have made of this, and the people who disobeyed the rules and put the rest of us in this situation.
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Beesie and Moth: The USA had that asshole Trump running his mouth saying it was nothing, a democratic hoax etc. We also have the jerks with no mask. Today in the grocery store a guy was putting his stuff on the belt when I had not even finished putting mine on. I took his chips and threw them back at him. And he's looking at me like I'm the asshole. I might have over reacted but I'm sick of people being stupid .
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Beesie , the direct quote from the receptionist when I told her the doc had put a rush on the results was. " The lab does what the lab does and it doesn't matter what we say, results get here when they get here. " I DO blame the system that has outlying areas served by one central lab, if my understanding is correct. I am not sure on how/when reports get added to my health portal. Times on that vary also.
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runor, in your previous post, you said that your doctor's office told you that you will get your results at your follow-up booked for May 21st. You also said that you will continue to check the patient portal to see if the results show up sooner. I interpreted that to mean that your doctor won't call you with the results prior to the scheduled follow-up, even if he receives the results tomorrow. I did not interpret that to mean that the results won't be in from the lab until then.
If the issue is that the pathology lab is taking a month to get the pathology done, and if this is because there is only one centralized lab for the region, then the issue sits with the B.C. Ministry of Health and your region's health authority.
As I suggested, why not see if there is someone you can talk to about the workings of the portal, someone who can explain the rules of how they post. Many portals include this information on their website.
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runor, that is terrible, waiting a month.... my GPO calls me the day of scan or the next day if he gets the results too late. Can you call your GP's office to get the results? I would be bugging your MO's secretary every day for a call back with results & I would be telling them that I will call them every day til I get some results.
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runor, thinking good thoughts your way
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Runor - sorry you are stuck with the frustrations of your government’s health care. Seems like there is no concern for the patient. Truly a shit show.
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I received my biopsy report the next day from my D&C. My Gyn said I had to be seen 10-12 days after the D&C to check for infection/healing. Runor, maybe the scheduler didn't realize you just had an outpatient procedure? As far as Covid goes I am excited to get back to normal. Vaccinated and ready to not wear a mask! Tomorrow they are going to release new guidelines. It was funny to see Biden on a zoom call double masked! Hopefully my grandson can play soccer without a mask on. They had to call 911 last week because one of the players fainted on the field.
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Exbrnxgrl, I agree but I don't agree. What you said is the standard response to vaccine issues. I had an unusual reaction to the vaccine. But not unusual for people with autoimmune diseases. I have MS. Two weeks after getting the vaccine, I had a severe reaction that took away my ability to walk and worse, to think. I have, since getting the vaccine, bought a walker, a shower chair, two toilet frames (look it up), and a rollator. I can't stop regretting getting the vaccine. Maybe someday in the future, I will accept my fate but not yet. That is a lot of sacrifice for one person. Oh, and the wheelkchair is on the way.
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Oh Jaycee, I am so sorry. That's even worse than I realized. I know my direct report is still suffering too (the one w/ RA).
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runor - that is too long to wait. I have no experience with Canadian Heath care so do not know if that is typical. Usually I get results quickly. On one visit when I said I had not heard back, DR suggested I might need to self advocate and keep calling to get the ball rolling. Nice advice, but I wanted to scream as I thought about all the time I have spent calling people and asking questions. I did tell CARIS that I wanted them to call me about a question I had on resuts, I think the lab screwed up and did not have enough sample left to retest, almost all resuts were "indeterminate", with a footnote about a technical error. The "patient advocate" and I spent several minutes playing the "broken record", but I do expect them to call me and explain what that means. Good Luck to you and Hugs, don't give up.
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Jaycee,
I understand and if I had MS, I would have had concerns as well. What I was trying to say is that for most, not all, complications are mild and outweigh risks associated with COVID. Of course there will always be exceptions but most peopleare typical and have no great reactions to worry about.
What we know about the vaccine and possible side effects will increase over time and clearly, those with co-morbidities or other health issues do have concerns that will need to be addressed. I am so sorry that this effected you so negatively and yes, I know what a toilet frame is 😊.
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Jaycee.....I am very sorry for what you are going through. You have paid a high price and it is very unfair. I do hope that things improve.
Runor....Waiting that long for results is completely unacceptable and you have every right to be as angry and frustrated as you are.
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I just wrote a long paragraph and I lost it. Deleted it by accident. I'll try to remember what I wrote but half will be lost forever. (Using a word processor now to be sure it is saved.) I can't believe I didn't listen to myself. I just did what I was told. Odd for me. The MS Society and other MS organizations said people with MS should get the vaccine. I just blindly followed. I have not spoken to my PCP (also my palliative care doctor) because I don't know what to say. Some system created a space where this could happen. It will never be fixed. Medicine has changed into this. I call it "cookbook medicine". Doctors just do what they do. Blindly. Unless you follow a standard program, you are out in the cold by yourself.
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Sorry I'm ignoring you, runor. I'm just all caught up in myself. Plus I can't understand what is happening to you. Do they not understand how much stress contributes to cancer? Call, call, call, bitch, bitch, bitch. Camp out in offices. But why are we required to do all that? Like a rat in a maze. This is why firearms are legal.
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