STEAM ROOM FOR ANGER
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Had my monthly oncology appointment today. Met with the nurse practitioner today and she is awesome. More time for questions and discussions. After that went to a coffee shop and ran into my old GP which was interesting, we politely ignored each other. When I was initially having symptoms of recurrence (difficulty breathing during intense exercise) she blew it off and told me it was my fitness level. I’ve been super active and fit all my life so I knew this was different but she did not take it seriously or ask any additional questions. Instead she told me a long story about herself! So since she didn’t seem too concerned I ignored this for months and then went to a different doctor who right away took it seriously and then after appropriate testing I was diagnosed with stage IV cancer. It would not have changed the diagnosis but I would have got treatment months sooner. So I did write a letter to my original GP about my diagnosis and suggested she listened to her patients more and talked less about herself (this was a pattern of hers that was getting worse). And that’s why it was a bit awkward running into her at the coffee shop, but I hope the letter made her reflect and listen better to her current patients.
Things seem stable right now. Get my scans next month, always scary. White blood cell count hanging in there. Will get blood tumor marker results in a day or two. Having friends over for dinner. Keep trying to live life. Good day to you all and hugs!0 -
KatyK - a LOT of general practitioners could use a letter like that. As I've already written on here, both of my breast cancer occurrences were written off and ignored initially by ignorant doctors, who made excuses like "youre tiredness is due to depression.", "your pain is due to osteo-arthritis." I fell for it both times, but now I swear I will no longer let a family practitioner blithely write off symptoms, that yes 90 % of the time may be something innocuous, but may also be symptoms of cancer and mets.
KatyK,glad you're keeping up with your markers and test. Hoping for you you continue to do well.
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I need to vent about something not cancer related! I have awful parents. The sperm donor and I do not speak anymore because well he's an a$$hole and his new wife is worse than him. Long story but she is ticked at me for repeating something my 4 year old said about her grandsons "Lucas doesn't like to play with AJ and Michael because all they do is fight." Fist fight! Apparently by telling them this I have insulted her family and should apologize - F that.
My mom, is a Drama seeker and a lier. I can't stand talking to her anymore, I have no empathy for this woman. I feel a lot of anger and hate towards her. I didn't notice any of this till I was pregnant with the twins (10 years ago), my brother tells me she's always been this way. My therapist thinks it's due to her upbringing, that she lacks empathy for people from being shuffled around from house to house to live. Yesterday she tries to tell me that my step dad had paper work from the cancer clinic hidden, didn't fill it out and that's why he didn't get his follow up after his initial diagnosis a few years ago. NOOOOOOOO, it was the clinics fault, it's the same clinic I go to and I get phone calls for appointments not paper work. They should have followed up when they didn't get any calls from the clinic and not it's too late, so it's actually on both of them - the clinic and my mom and step dad. I am sooooo sick and tired of all her lies and drama seeking. I get I could have had worse parents and a worse upbringing but OMG. The only thing I can do is ignore it apparently, she won't change, maybe with therapy, but that will never happen. She will always have some excuse to not go. I think of all the past lies and how I fell for her drama and fed her addiction. Dam Her!
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Erg! I am so pissed off. I have bipolar disorder, so i take a cocktail of psych medications which keep me from killing myself or anybody else. I've been taking them for 10 years and i have been very stable. I saw my psychiatrist last week and got prescriptions refilled, expecting delivery last Monday. I took my last full dose this past Tuesday and called Cigna, looking for my meds. They said if i paid $17 for expedited shopping, they could get them to me today. Great! Here's my credit card! Wednesday i cut the last pills in half and took half doses the past three days. Well, now, Cigna says that they JUST TODAY shipped my meds, meaning I won't get them until Monday earliest.
I started going into withdrawal this a.m. I can't reach my psychiatrist. The local pharmacy can't sell me anything. I'm waiting for my PCP to call back and sincerely hoping she will call some in for me. At this point I'm dizzy, nauseous, listless, and headachey. I know from experience that i will be just about immobilized with vomiting and vertigo by tomorrow if I don't get this medicine TODAY. These are not narcotics or benzos. Just an antidepressant, a mood stabilizer, oh, and an ANTI-PSYCHOTIC. Yeah, let's withhold THAT stuff.
I'm just so ticked off. Cigna dropped the ball in a big way here. I always make sure I have a minimum of 7-10 days medication expressly so i DON'T get in this situation. So, now it looks like I'm going to have to go to a walk in clinic to get enough meds to tie me over to next week. $$$
I swear, if i could live without these drugs, i would. But i can't. I tried. Ended up in a psych hospital. Twice. So,this is my life. Why is thivso hard fir them to understand?
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Oh mustlovepoodles, that is awful, I hope you have your pills soon. Great big cyber hugs.
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I can’t understand how people can keep their jobs. THat is serious. I would call and complain everyday until someone gets a write up. That is just NOT acceptable! I hope you’re able to get your medicine. I so hope you get what you need. Much love ~M~
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OMG, I've been sweating bullets all afternoon. I FINALLY got word from my PCP that they would call in the medication at 4:55pm. I literally camped out at the pharmacy for 2-1/2 hours until they gave up The Precious for $25. I didn't care if it cost me $200.
I swear i sound like a crack addict. I promise you, I'm not. These meds really get you in their grip. I fear the day that i might not have access to them. They make my life worth living. Suddenly stopping them makes me so sick I could throw myself into traffic.
I'm gonna watch some Game of Thrones, take my meds early, and go to bed by 9pm.
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Poodles, I am so glad you got your pills. I am on Trintellix and going off arms me into a deep depression with suicidal thoughts so I understand how you feel. I would be getting a hold of Cigna and speaking with a supervisor. Not cool to screw with people love that, is dangerous!
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Nobody should be ashamed about having to take Rx meds for bi-polar issues, depression, anxiety, neurosis, psychosis , etc.
My DD has been on antidepressants for a while. They really made a difference. She was suicidal b4 going on them, and we almost lost her :>(.
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Absolutely right Lita - no one should be, it's such a common issue, lot's of people are on these types of meds. I just hope poodles is doing ok now.
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Much better this morning, after getting my full dose of meds. Thanks for thinking of me.
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poodles~ I am so glad you got your medicine and are feeling better today. Phew. That is not something to mess around with. I hope some heads roll. Patients are just blown off sometimes. It’s really shitty. Keep feeling better! ~M
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I'm angry but not sure where to aim the anger. I think it might be BCO. In the last week or so I've clicked on topic links related to intimacy during cancer treatment. You've seen them in Active Topics probably. Those boards are not racy, just advice and experience from others who've had their bodies attacked by this disease and AI's and other meds.Patients like me, wanting to do what I can to have as normal a life as possible for me and for DH.
At the same time, awful emails started landing in my email. You know the type- their subject lines scream about hot action and pictures of this or that prurient subject. I'm the only person using that email and the only person using this tablet and I have not visited any sites like that. Of course I trash the emails without opening them but I am really angry that these sleazy scammers have gotten my email addy. It had to be from this site. At set up I chose the most secure settings for the account. I don't want to leave BCO but I might.I
I joined here in Feb. I think. I've clicked many links here but never received Ibrance spam, or taxol spam, ha ha. When I joined I actually thought I was dying and I was in really bad shape so the last thing on my mind was intimacy but as soon as I clicked on a relationship topic the junk started showing up and I hate, hate, hate it.
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Hi MuddlingThrough,
I’m sorry you are experiencing this spam attack but I can’t see how this could possibly have anything to do with BCO. Maybe you clicked on some random thing that came into your regular email just to see what it was, or maybe you clicked on a link to an outside website that someone here posted. Why don’t you contact the mods directly. I’m sure they can explain the ways in which they protect our information and give you advice on how to protect yourself when following links. Good luck, I think it would freak me out too.
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Muddling, I visit the intimacy threads on BCO and have never had that problem. I don't even think BCO has my email address. Spammers are very clever and can get to your email address in many ways. As Sara suggested, you could PM the mods. Sorry this happened to you.
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Muddling, think how many times we type the word breast in our web browser looking for information on breast cancer and breast cancer treatments. I don't understand the ins and outs of how entities can find us but I do know they can. I don't think the breach came from BCO. I feel confident in their security practices.
My husband is a wood worker. He can go to a woodworking tool site and later get slammed with the same garbage you are dealing with. Why? Because woodworking is a predominately male hobby and the abusers try to lure men to their porn sights. Is it the fault of the woodworking sites? Probably not.
I get these emails too and have been for years. Don't open the emails and just delete them! Do not leave us here at BCO!
Hugs,
Barbara
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Thanks Sara536. I'm verrrrrry careful what I click and don't open emails that I don't know for certain who sent them. Sometimes here I click a link to a clinical trial or article but Nothing in the subject matter of the spam. I might contact Mods and see. I don't need more aggravation.
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Anyone who is Canadian spare yourself and do not read my rant because you will be offended.
I hate Canada and its stupid f*d up sad excuse for a Canadian healthcare system. In the U.S. when I first had breast cancer I had a mammogram showing a lump in mid-August 1998. I had a biopsy a few DAYS later By the end of September I had already had the tumor and 16 lymph nodes removed. By October I had started chemo. So a month and a half after lump is discovered I'm well underway to getting "cured."
In Canada, I found a lump at my collarbone, I finally was able to force my cost-saving doctor to let me have an ultrasound until middle of June. The biopsy wasn't until an entire MONTH later. It is now the end of July I haven't even been able to see an oncologist or surgeon yet. I don't even have a complete biopsy report because I am told it will take a MONTH OR MORE just to get that. I do not even have my first appointment with an oncologist until August 9. They didn't even schedule me in to see a surgeon. So a month and a half after lump is discovered I've gotten nearly nowhere, no treatment, nothing.
God only knows what delays I will face until I ever actually get treatment in this god-forsaken rotten-to-the-core sad excuse for a country. The medical staff is mostly rude and obnoxious because they don't need to worry about providing good service, the governmment will guarantee they get paid even if they suck. Everyone is always on some government-paid holiday here, no doctor ever works a microsecond past closing time. My doctor's office, a large office with probably 50 staff members, opens at 9:30, closes at 4:30 and CLOSES at lunchtime, for ONE AND A HALF HOURS, so everyone can get a nice leisurely lunch in. What kind of medical system is that? I hate it so much.
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I am also so angry that my stupid family doctor missed signs of a recurrence for over a year, like a pain I had in my groin area, the swelling on my collarbone, the fact that suddenly a visible pattern of blue veins emerged all over the upper right quadrant of my chest and shoulder, (blood flow feeding the tumor), the fact I was exhausted after doing the simplest tasks, headaches,, and pain along my hips. All of which I reported to her, and she flippantly wrote off. Also, when I was begging to get an ultrasound, she told me condescendly, "Oh Amica, no one gets a recurrance at 20 years."
Yeah, read the literature, dear Doc. There is about an 18 % chance of recurrence for women with my case history, aggressive cancer at young age,
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Very informative Amica. Thank you for all that. You have a right to be angry, I am angry for you and all of us.
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Socialized medicine...ya gotta love it...but it's better than nothin'!
Not defending anybody or any bureaucracy here, but if you were living in the US of A, and had NO INSURANCE, you'd already be dead unless you had a huge savings account to drain, or a home to get a 2nd mortgage on, my dear.
I agree with those who say the Canadian system should have minimal co-payments so everyone would take it a little more seriously, and there would be more funds to go around for better, more timely testing, admin support, Tx, and nursing care.
Of course the medical staff doesn't give a s&*t!! They get paid the SAME amount regardless of the service they provide. No incentives whatsoever. Who can blame them? Everybody wants to do the LEAST amount of work for the MOST amount of money. In Canada, they don't make a lot of $, so why bust their asses giving superior service?
They're not carpenters making cabinetry, so there's no PRIDE in workmanship or in getting the job done right. Nobody's gonna give 'em a pat on the back, or, least of all, a BONUS at the end of the year. They're govt. employees after all.
I know this isn't going to make you feel any better, or help your situation, Amica, but it's just a different perspective. In order to get thru my own trials and tribulations with this disease, I've had to look at both sides of the coin several times. Sometimes it helps, and sometimes it doesn't.
Hope you can get this all resolved soon,
L
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Lita57
There is Medicaid in the U.S. for people with no money, although I have never been on it. And hospitals have charitable foundations that help patients with no funds. But I acknowledge that the U.S. system is by no means perfect either.
I'm just ranting because I'm not happy with the delays in medical care I'm currently experiencing. Maybe once I ever see an oncologist and if I ever get treatment in Ontario I'll view it differently. But I still think that nearly two months from the initial ultrasound of the lump until seeing an oncologist is a totally unacceptable delay. And over a month to get biopsy results is also unacceptable.
I 100 % think there should be a $10 copay per office visit in Canada. It would pump millions more into the system. In the U.S. people pay too much out-of-pocket. In Canada they pay too little.
with love and compassion for you Lita57,
Amica
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You can make too much to get medicaid. So many are living in poverty but "make" or have a little too much to qualify. The only time medical care can't be denied here is in the er. Once you are stable, you are on your own.
Some places may have programs for assistance but the line is long. So if you have cancer and can't get financial aid or medicaid, you are hosed. Plenty of go fund me for these poor people. And we have trump who is doing his best to reduce medicaid and get rid of obamacare. More people next year will find higher premiums they can't afford and make too much for medicaid. So more uninsued people will happen next year.
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Medicaid is at risk for going back to before. Trump is busy reversing Obama's health care law starting with no penalty if you don't carry insurance. Obama expanded medicaid beyond disabled/seniors but we'll see if it holds. I'm glad I live in the best state, ca, where most believe truly affordable healthcare should be available for all. I would never live in a red state.
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Rosabella,
Yes I understand. Right now it is dangerous times for the Affordable Care Act in the U.S.
Universal quality health care for all is what I believe in. Ontario's just not there yet in my opinion, in terms of quality timely healthcare access, its system is over-whelmed.
The Ontario government knows it has a problem and is apparently trying to get cancer patients more timely care; it is an ongoing problem they are supposedly working on (but I'm not sure how lol.)
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Amica, in spite of your warning, I read your posting, and I'm wondering if the difference in your care compared to mine has anything to do with the fact that I'm getting care in a small city and you're in the Toronto area. I haven't encountered the rudeness and lack of caring you've described, and I wonder if it's a big-city thing. (I hope this doesn't offend anyone in the GTA, but I wouldn't live there if you paid me. I grew up in a big city so I'm not a small-town girl by any means, but there's just an intensity in Toronto that leaves me cold.) The surgery scheduling department at our local hospital works on Sundays - I've gotten Sunday calls from them on 2 different occasions. And my MO's team always gets back to me the same day I call with a concern, and usually after 4:30 pm! That said, I think what's happening to you is inexcusable and I fully appreciate your rant. The way your family doctor blew you off, telling you that no one has a recurrence after 20 years is just lazy - if she'd bothered to crack a book she would have learned something about the subject. And I agree that there should be a co-pay, but heaven help any politician who proposes that.
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thanks pingpong1953
I'm not really in the GTA. I guess one would call it Hamilton area.
I guess I shall have to make peace with the system here because I can't fight the cancer and fight the system. Although I still wish someone could tell me why pathology results take a month. Makes no sense.
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that does really suck to have to wait any time at all when we are dealing with something as serious as this. I know i had my results back within less than two days. There is no excuse for that as far as I am concerned. What I have learned Is. “the squeaky wheel always gets the grease" learn to become the most polite kind pain in their asses. Call everyday if you have to. But hit them with such kindness they won't be able to help themselves from helping you. If you tell someone how wonderful they are and how good they are at what they do. And yada yada please help me. No one else has helped. I hope you can help me , or please give me a contact who can I'm desperate. Please. Works every time. Kissing ass goes far sometimes. Although I really hate to say itsdisgusting, but it works. I would try every single thing I could think of. Including walking into your doctors office and all of a sudden faint right there. Oh my goodness, oh my. Such anxiety oh my, I need help please. I'm so stressed out. I need water. I need to sit down. Seriously. Sometimes drama is the way to. Go. I've used it many times. Works wonders. Especially if your loud. They don't like disruptions at all, it makes them look bad, like they aren't doing their jobs. Try it. You'd be surprised how many people's attention you would get. Just faint carefully. Desperate measure calls for desperate actions sometimes. I wish you nothing but wishes for the help you deserve. ~M~
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yep on the kindest squeaky wheel. I'm very friendly with staff but persist nicely. I was in with cellulitis last week and being friendly, asking about something about them, etc automatically scores points. I had a bedpan roomie. Was told all female rooms were bedpan. So the charge nurse got permission from the super to change a male reserved room to female.
It also helps the hospital here is awesome. They do frequent surveys on how their staff did, which helps.
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thanks Micmel
that's not a bad idea.
I think I am actually going to try that "please help me" approach with my doctor, and see if she can get a move on for my pathology results....but I shall only faint on a clean floor
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