STEAM ROOM FOR ANGER

NotAsCalmAsILook

can we pause for a minute and think about pharmaceutical companies? My MO is putting me on Verzenio. With good health insurance I’m looking at a copay of $775 a month (for years). Their savings card theoretically covers the copay...

If they’re willing to cover the copay (up to $25,000 a year!) why are they still charging so damn much???

I get it’s expensive to do the R&D ... but that argument loses something if they’re willing to subsidize it by so much.... they want as much as they can get from the insurance companies!

runor

I am wearing a clouded face shield as I sit down to type this. 

Beesie, you are correct that my choice of term could have been more specific. Perhaps my frustration flinging at the 'Canadian Healthcare system' was too broad. Had I known whom to aim my vitriol at more specifically I would have. But I did not. So it was a generalized flailing of frustration. However, I have received some service (rather NOT received service) that is truly abominable. Concerning our lab, this is not the first time I have been waiting and waiting and waiting for a blood test and watched others, who have been waiting for hours also, walk out in utter frustration. Last year I needed a medication free blood test done in August and they told me to come in October. OCTOBER for a fucking blood test I needed in August! My oncologist was unhappy that the blood work he requested was not done. He did not phone the lab and yell at anyone there. No. He asked me why I didn't go to a different lab. Well, how many labs in how many towns am I supposed to phone to try and find a way to make the grand and glorious, the world renowned, the virtuous and holy Local Medical System fit me in in a timely manner?  And then when you DO phone a lab you listen to a 7 minute recording that ends with, "this number does not book appointments, for that you need to go on line at blahblahblah!  Elderly people have no idea what to do with this! Nothing about this is set up as a service. The 'system' is untouchable and as such answers to no one. 

As to the US being more top heavy with management, of course they are. They are 10 times our population! Somewhere there is probably comparative information on how many people Canada employs in the healthcare field on a per capita basis (if I used that term right) but I don't know where to find it. I would like to know what wait times are like compared. My friend's mom just got shoulder surgery after a 5 year wait. Five years. Really?

Perhaps hollering at a doctor might change things, but even that is difficult. Because doctors have receptionists who are trained in Ninja warfare tactics and you can't get a phone appointment to even yell at a doctor until the Thursday after next. In which time you may very well bleed to death or die of  septic shock, or go to an emergency room and sit there for 6 - 8 hours. During my bleed I waited 4 1/2 hours to be seen in emergency and I felt that was FAST service for around here. I wanted my oncologist to be aware of this bleeding thing  and I wanted him to order a blood test to determine if I actually am post-menopausal and called his office. This was end of March. Receptionist said...well, Dr is very busy and you do have a phone consult booked already as your annual follow up so he'll call you in 20 days."  I flipped out. Beesie, I get TIRED of having to flip out and raise my voice and INSIST that I talk to someone.   I PAY for healthcare. I should not also have to argue and fight for it. Yet I do. And that is a big, fat effing FAIL for this system, local or otherwise. We hear over and over you have to be your own advocate. Why? Because this system is broken in a thousand places . Gratitude for a system that does not leave us broke DOES NOT MEAN we have to accept medical service that leaves many people vulnerable to falling through the cracks. Medical care might not break us, but often it leaves us broken. 

So. If a person has good service and good experiences, good. I'm happy. That is as it should be. But be aware that good services that you happily accept are NOT what everyone gets and it's easy to take the high road when you are on the receiving end of the high road. It will change when you stand in line outside a rural lab for 4 hours with no chair to sit on and then get sent home to come back the next day and start all over. We need to clean this mess up and it starts with someone (not sure who) standing in line with us and saying, this sure sucks, could we not provide some chairs? But that person is...taking a lunch break. 

I hope that whatever is going on with you is not serious and I hope you get some answers quickly, because waiting is HELL! And...we're still good, at least as far as I'm concerned. Although I might phone my doctor and yell at him about you. 

Anonymous

Beesie - Thank you. I like the idea of an umbrella with a very pointy tip.

NotAsCalmAsILook - I wasn't kidding about my sword cane requests. 😁 The closest gift was a tiny plastic katana with stand that came with a Kill Bill DVD set. Hope you don't have to pay for Verzenio. Pfizer fully covers my Ibrance co-pays.

moth - Again you're stating the same thoughts I have. 🤗 Must be the avatars.

runor - I appreciate the services I've received in Montreal because I spent most of my life in midsize cities (in other countries). I know there are vast differences in health care between rural and urban areas in many countries. Elderberry and Beesie made suggestions to where you could complain. It's not fair that you need to. In the meantime, rant away.

Beesie

runor, I agree with you completely. Medical care too often is a disaster, with too little consideration for the patient. Somewhere between the 1950s and now, doctors and the medical system as a whole lost sight of the fact that the patient comes first and their primary role is to be there to serve their patients. But there are some doctors and facilities that still attempt to deliver good patient care, and it's these examples that make me certain that the problem is not some mysterious healthcare system, but it's the doctors, nurses, administrators, hospitals, testing & imaging facilities etc. themselves. Every one could choose to do things differently to be more patient focused. Too many choose not to.

I've been to the ER twice over the past few months, both times ordered there by my doctor, who I previously loved but who now does anything possible to not see patients in our Covid environment - that's one that makes me blow a gasket. Never been to an ER before in my life. Being in a big city, I have lots of ERs to choose from, so I ended up at two different places. The first one was crowded and messy and shuffled patients from hallway A to hallway B to waiting room C to waiting room D. In all the hours I was there, I dared not go to the bathroom or the Tim's for fear I would lose my seat in whatever hallway or room I was currently assigned to. Covid protection protocols were minimal. I had a very long wait to be seen, a long wait for testing, and a long wait for results. But the doctor was phenomenal - very thorough, helpful and informative. The second ER was not busy (I picked that hospital on a Friday night because it's in an industrial rather than residential neighbourhood), was spacious and clean, with well spaced seating and partitions between every seat. I was seen within minutes (I was still texting my DH to let him know I'd gotten through admissions), I didn't wait very long for testing and received the results promptly. But the doctor was cursory and distant and uninterested. Both ERs were in major hospitals in metro Toronto, operating under the same Ontario healthcare system and no doubt with similar funding. Yet my experiences were very different, which makes the point that most often, it's the facility and the individuals we deal with that determines if our experience will be positive or negative.

I am lucky that I have choices when it comes to medical care, but I give up a lot to ensure that I have these choices. I would go ballistic if I had to endure some of what you've experienced. And you are right - you should not have to flip out and raise your voice and insist on talking to someone. But as an FYI, my parents lived in Florida for decades. They had Medicare and paid a ton for extra coverage. Yet on a regular basis, as he managed his own and my mother's care through cancer diagnoses, hip replacements and a dozen other health issues, my Dad would flip out and raise his voice and insist on talking to someone. Or he would go to the doctor's office and camp out, refusing to leave until he got the attention/service he required. Bad medical service is available everywhere.

I hope that what you are going through turns out to be a horrible false alarm, and I hope that you encounter some good healthcare professionals along the way.

Lastly, as an FYI, the study I linked about the U.S. healthcare system being more top heavy with administration was comparing Canada to the U.S. on a per capita basis. That eliminates the population difference.

Elderberry

moth: You picked the right place to live if you hate the sun. I like the sun, but not heat. Give me a nice sunny day at 20 C. No hotter. I never dreamed of a vacation in some sweltering, sticky hot tropical place. I like going to places where you need a sweater but not a puffy coat and boots. I hate snow too. I want a temperate climate and NO CANCER

runor: I get angry about wait lists for surgery and what can be inexcusable delays in testing but I am still glad to be on this side of the border. Are you considered Interior Health Authority? Go bitch to them. You have valid concerns and have every right to be pissed. I don't know if the PHSA covers all the regions but they were very responsive to my email.

Serenity STAT: if I believed in Hell I would like to think there is a very special place there for racists. And for those who watch and do nothing (like the doormen in NY) - they can go there as well. I am sorry that you are being targeted. It is so wrong!

AliceBastable

is there a Steam Room for Freakout Time? I made the mistake of entering all my upcoming appointments in my calendar last night. Mid-May to mid-June is when I see all of them, so it's MO and labs, mammogram and BS, CT and urologist, and PCP with any other labs. I guess it was too much on my mind when I went to sleep, because I dreamed my urology surgeon had a side business of euthanasia, and he talked me into a next-day appointment. AAAARRRGGGHHHHHH!!!! I had to tell Hubby, and then he and I were frantically trying to cancel the appointment - in the dream, there was no such thing as just not showing up. I hope the memory of that dream fades by my real appointment or my blood pressure will go through the roof and I may bolt when he comes into the exam room! Craziest dream I've had in years.

CFKelly

My Covid Rant.

Last weekend my brother had a birthday party for his 2 year old. While I know that parties in the age of covid can end up being super spreader events, I went to the party anyway. I mostly stayed outside and hung out with the kids, did my best to stay 6ft from adults and moved away if someone lingered in my space too long. Was it against my better judgement? Yes. But the last few years have been rough and I can’t even say especially the this last year with the pandemic, because I have had some doozies, that this last year was the worst of it. I am on a good 5 year run of shitty years. But the loneliness of living alone and basically spending the entire last year alone combined with having had my first covid shot, I threw caution to the wind.

If you have guessed by now that the party has ended up being a spreader event, you would be right. So far 4 people have tested positive, all with mild symptoms. I am not the praying sort, but keeping fingers crossed it doesn’t go further.

My test was negative.

When I told my best friend that my brother and SiL are both positive, her reaction was....I hope he gets really sick and learns a lesson. This was an awful thing to say. And it upset me because at the point she said it, I did not have the results of my test yet and I have total PTSD of having medical news of a positive test for something that could kill me.

What she said was so unhelpful in the moment and really disappointing. I was more upset and stressed about my own test and didn’t need that at that moment.

Then there is my brother. At first he seemed to regret the party. But the more he told me about his symptoms and his wife’s symptoms and his mother in law’s symptoms and how they have been having them since...Easter, I can’t believe he had the party. I can’t believe he didn’t tell anyone beside his wife’s family about all these symptoms they had stemming back to Easter.

I said to him that he really should have told people so they could make their own decision. His response was to tell me how he had symptoms “before” and it was never covid, so why would he say anything now and when on a long rant about all his other “false alarms”. It was a rather long rant.

I said to him, that was a lot of words for....I am sorry, I should have told you so you could make your own choice to attend or not.

His response...”I am not sorry”. There was nothing he could do about the symptoms he was having, he thought it was allergies.

Now he is pissed that I “demanded”an apology. “No one else” is pointing out that they should have said something about a fever and allergy like symptoms.

Whatever. I don’t know why I bothered with him.

He is never going to understand that between hearing they were infected and getting my own test results back, it triggered my cancer ptsd. Waiting to hear if you have something that can kill you is stressful.

I am trying to not let this be the straw the spirals me into depression right now. I feel so alone.

How did I surround myself with such selfish people. I knew better than to say anything except oh its not your fault you are not responsible to anyone but yourself.

And if I am being honest, my friend had a point that he won’t learn anything unless he gets really sick. I am glad he is only having mild symptoms, but she has a point.

Okay, I am feel better now.

AliceBastable

CFKelly

Gosh, that's a tough situation all around. I get the mixed feeling about your friend. You kind of want to pound on your brother for being careless with your and other people's lives, and YOU can say that but someone outside the family shouldn't. I'm glad you tested negative. Maybe someone else who got sick will give him hell and he'll actually listen.

runor

CFkelly,  I also have allergy like symptoms, because I have actual allergies. But NEVER a fever. Never. Most people with basic seasonal allergies do not get fevers. If your Bro had a fever and did not think that coupled with the other symptoms was worth noting, then he's been living in a cave with his head in a box. And while I think all these covid measures are completely out of control and over the top, I DO recognize that there are people for whom covid would be a serious matter and all people are  entitled to as much honest disclosure as possible so they can make whatever decisions they find best for themselves. Your brother should have been clear and honest then let you do what you wanted. His not tell you is the same as a lie. Being unclear, withholding information, omitting critical details is lying.

Alice, what's the deal with crazy dreams? I think it's stress related and all this appointment stuff you are dealing with is, to me, very stressful! I dreamed last night that Hub and I were at a party and he cheated on me with a floozy wearing a bikini top and velour sweatpants. Velour! Come on already! In the dream when confronted he shrugged and said she was stupid. Apparently if you cheat with a stupid woman then it's not cheating. I woke up wanting to slug him in the throat. 

Elderberry, yes we are in the Interior Health catchment area. I might write a letter. Waste a stamp. 

CFKelly

Runor,

I just re read what I wrote 3 times trying to figure out how you knew he had a fever with his “allergies”. Because when he revealed he had a fever last week was when I said he should really have told people. You hit that nail on the head. Thank you for your response, I needed it!!

Alice,

I do have mixed feeling about what my friend said, tho I would never say that sort of thing about anyone. LOL. Ironically, my brother has already informed me that I am the “only one” that has said he should have done anything differently and I am the “only one” demanding an apology. Sigh. Whatever. I don’t regret saying it. But I know he will sure regret if anyone gets really sick.

At the end of the day, I hope everyone never has more than mild symptoms and the 4 that have it are the only ones. And I can’t tell you how much I appreciate the responses!

Beesie

CFKelly, by inviting people over and not telling them about his symptoms (and yes, fever was the big red flag that should have alerted him to the fact that this was not allergies), your brother was playing Russian Roulette with other people's lives. That's unconscionable. The fact that he doesn't recognize this, and doesn't even understand that he owes you an apology, is unbelievable. The fact that you've had a few bad years and that this triggered your cancer PTSD makes it worse for you, but his behaviour is unacceptable towards anyone. There's a pandemic. 3 million people have died. Yes, the risk of dying for any one person might be very low, but we all have the right to choose the extent to which we expose ourselves to this risk. He took that choice away from you and all the other guests who were not informed about his symptoms prior to attending the party. There really is a problem if he doesn't understand that.

Stress dreams. I get doozies. I am often left or lost at train stations in unknown locations, sometimes with my DH and sometimes alone, usually with a strange collection of people, some of whom I've known at some point in my life and others who only appear in dreams (my dreams have recurring characters who don't exist in real life; even in the dream I am aware that these are dream characters and not real people). I wake up panicked and exhausted. If it happens to be the middle of the night when I awake, I'm afraid to fall back asleep. When I'm stressed with appointments and testing I get these sort of weird, often disturbing, dreams almost every night. I'm sure a shrink would have a great time with me!

KIDI919

Serenity: I would carry something. I think it's shameful, disgusting and ignorant to hate people because of their nationality. I believe most people in the world just want to live their lives like normal people. However you have a multitude of assholes that think that anyone that doesn't look like them, think like them deserve to be treated like shit. My MIL is a "born again christian" . She told me that me and my kids are going to hell BECAUSE we don't believe what she does. ( apparently her son is exempt).UGH sometimes I hate the human race. Stay safe please

KIDI919

Not as Calm as: What if big pharma stopped spending a shit ton of money on advertising???? Then maybe we could all afford our meds.

CFKelly

Beesie,

There really is a problem with him. He says there was nothing to tell, he feels fine. He just has a cough and sleeps 10 hours a day. Insert eye roll here. Then he says that he had a consultation with a doctor today who told him that the time since he had the fever and allergy symptoms means he really only needs to quarantine for a few more days. Because the fever and allergies were 9 days ago...before the party. Are my eyes still rolled back, or do it do it again. Ugh.

He is playing Russian roulette. And now I know without a doubt that I am too if I go near him or his family. I won't be doing that again.

Honestly, I knew saying anything to him would not end well, he would get upset and go into defense and deflect mode rather than just be humble. I suppose was my friends point...he won't be humble unless something really bad comes of this. Which, I hope nothing does.

Thanks for your reply, it helps me sort this out.

Speaking of crazy dreams. I had a dream that a friend of mine cancelled a trip we had planned. I don't know where we were going, but it was an awesome trip. I was so mad in the dream. I woke up mad. I texted her that I can't even talk to her I am so pissed about this dream trip that she cancelled. LOL 😆 I am still mad about it. She still says, I don't know why you are so mad, you don't even know where we were going. Edit: ironically to what brought me here today, she actually led with apologizing for cancelling.

nopink2019

Alice - crazy dream. Thanks so much for sharing it. I know it was awful for you, but laughable hearing about it. Guess we can all relate too much.

CFKelly - I applaud that you stood up and let your feelings be known. If people have "rights" to ignore covid risks, I've decided I've got the right to state my preference to avoid people w/o masks or who won't be vaccinated. And I'll play the "C" card if I have to.

I must admit I've had awful thoughts about wishing certain people would get severe cases of covid just to end their stupidity. But...friend of friend & spouse had covid, invited family over (no one else got it). Says it was nothing, now 4 months later, still can't smell & hands shake (35 years old). Denies any effects from covid. Made me realize many of those who deny it exists also deny any long term impact. We've all got our own long-term impact and don't need more.

Anonymous

Elderberry, KIDI919 - Racism has always been there. The attacks in the past year have escalated especially against the elderly. The woman suddenly attacked in NYC is a little older than me. It's infuriating. Growing up I infrequently experienced racism. I cannot imagine suffering through it everyday. I'm lucky that my kids are "white presenting". I never felt grateful for that until now (and guilty for it). I hate racists. All they do is create suffering.

CFKelly - Your brother was being selfish. I'm sure you're not the only one angry. Hope your tests continue to be negative.

bcincolorado

CFKelly I have a brother who is a COVID moron and now emails me all the time why he will NOT be getting a COVID shot! I just told him flat out then we not visit and they are not welcome to come here and risk infecting our mother who lives here and is vaccinated!!

Cowgirl13

CFKelly, I like how you put it "defense and deflect mode". It so describes what happens with a few friends and it never ends well. Humility--yes. I am going to talk to a friend about something she said that made me feel really badly and I'm thinking how to say it, over and over, and really it's just about me having humility. Thanks so much.

Elderberry

SerentySTAT: yes, racism has always been there. But 45 made it more than okay. He made it a mark of some kind of disgusting weird pride. He lifted up the rock and they all came crawling out into the light. There is only ONE race and that is the HUMAN race. We are beautiful in all our many colours. This crap makes me sad and angry.

KIDI919

Elderberry: You said it. That asshole has done a lot of damage.

KIDI919

My be loved SIL in hospital with covid that she hasn't been able to kick. She has lymphoma and has been under tx for that which has suppressed her immunity. She went to ER on Monday and they sent her home telling her to take tylenol. I'm pissed at 1st hospital. Thankfully she went to a different one tonight and they seem to be treating her condition seriously. Her onco hospital has not been of much help. told her to stop her oral chemo. Guess i'm angry and sad, worried.

Jelson

KIDI919- I am sorry to hear about your sister in law. I just read an article about this issue in the NYT, though it is mostly about people with suppressed immunity having to avoid covid, there is mention near the end about people's experiences if in deed they contract it. There does seem to be treatment to assist them in fighting covid-19 even when they don't naturally or with the help of vaccine, produce their own antibodies. https://www.nytimes.com/2021/04/15/health/coronavi...

What struck me most when I first read the article was that immuno-compromised people need to have their antibody levels checked post vaccine to make sure that they produced antibodies and if not, they should consider the treatments available to boost their immunity. Though not the main subject of the article, it certainly seems that those currently in immune- suppressing treatment need special care if they do contract covid-19. So many of the posts on this thread in the last few days have been about incompetent health care, grrrrr.

ctmbsikia

i was so looking forward to seeing my sister after my bs appt this afternoon -but she texted me while I was driving over to say she has had a day. The hot water heater busted and she was down there in her bare feet slipped and fell. Went to the er to check her head and one foot. She’s still there haven’t heard back yet. Even though I was literally on the next campus over, no one can go in. While I believe she went out of abundance of caution, she also is not one to just run to a doc. I feel she had to be in pain enough to go get checked. I had a print I dropped off at her house and the clean up crew was there ripping out carpet and there was a big hose out in the driveway through the kitchen and down to the basement. She is going to frame the print for me for the beach cottage. At least I got to visit my brother in law and niece for a few minutes among the chaos! On a good note, they are all elated that her latest scan shows no active disease and her mo is giving her a 3 month break on the Ibrance. I really miss her and wish I could have seen her to share in her good news and tell her how absolutely inspired I am by the way she compartmentalizes her situation and continues living life quite well.

I asked the bs since I got a good report, does this absolve me from the 6 month mri follow up? She considered pushing back but thought no let’s not. So I have an mri order due in July and annual mammo due in sept. See her again in oct. then I asked how long do I continue to see you? I see so many of you having their mo or primary writing orders for imaging. She said it’s 5 years although I could be seen annually with her (and mo) that would still give me someone doing an exam every 6 months. But since we are following something, here I am. Sigh!!! It makes sense of course it’s just so exhausting!! I asked if the mammo order is screening or diagnostic? She felt diagnostic would be better for me. I said yes, thank you and ran out of there!

bcincolorado

DH is a transplant patient and on meds daily and has to stay on them since had a transplant. Even though we have had our shots we still are COVID careful and stay inside mostly. Barely saw anyone since we had them even. Not worth the risk.

KIDI919

Jelson: Thank you for the info. They are treating her with plasma antibodies, steroids, O2 and antibiotics. DX with pneumonia. I feel she is in the right place.... My DIL works there as a nurse anesthetist and is keeping an eye on her.

Ctmbsikia:I was also hoping to extend my 6 mon scans and checkups to one year, but nope. PA said maybe after the next one.

ctmbsikia

Sending huge good do well, by well cyber vibes out to runor today. To everyone else as well.

My brother in law out in WY passed away last night. Jesus that was fast. Sister in law that lives here had to cancel her trip out there yesterday as she wrecked her knee. Maybe it's a good thing. So tired of unknowns.

My sister is fine, had a couple tests and nothing is broken or concerning. She'll be sore for a few days.

I am currently still coming down from my appointment fatigue. I had to eat a half cookie last night to get my brain to stop and go to sleep. While I realize I am getting good care and most all of this is "maintenance", the other part of me is just waiting for something else to go wrong, or the cancer to come back. I feel like a ticking time bomb, no one knows when it may go off. Hoping for calm and better peace of mind by the end of the day and I get almost 3 months before these feelings rear their ugly head all over again.

Trishyla

I'm sorry to hear of your brother in law's death, ctmbsikia. You've had so much loss lately. Sending cyber hugs from the left coast.

I'm sitting on the front porch of a mountain cabin, taking in the smell of pines trees and the sound of birdsong. This is my first time leaving my LA home in 13 months. Even though I'm fully vaccinated, it feels so strange to be out and about.

I'm here with one of my cancer buddies, and her friend, also a cancer patient. I'm mourning the loss of another cancer buddy in February. Her name was Julie and she died of ovarian cancer three weeks before her 45th birthday. I hate this fucking disease. I keep telling myself the more people I love, the more people I will lose. It doesn't help.

Sending out healing thoughts to Runor, and anyone else having procedures today.

Trish

AliceBastable

ctmbsikia

I am so sorry you are going through this again. I hope the cycle breaks soon for your family.

My hubby stopped for coffee at the neighborhood gas station on his way to work yesterday, and got stabbed in an attempted robbery as he walked outside. Luckily, it was on his temple and missed the big artery and didn't pierce the skull. That hard head finally came in handy. An off-duty cop pulled in just as the young guy who did it was running off, so he called it in and the twerp was caught before the ambulance arrived. WAAAY too much drama for early in the morning.

Beesie

ctmbsikia, I'm sorry for your loss of your brother-in-law.

runor, thinking about you!

Sunshine99

Alice, seriously? I'm stunned but glad your husband is OK.

ctm, I'm so sorry about the loss of your BIL.

Trish, I can smell it in my mind. It must be heavenly! We're driving to Bishop this weekend to see our "kids". Just a quick trip.

runor, we're all anxiously awaiting the outcome of your procedures.

To all the others, I'm wishing you a peaceful, pain free day.

Carol