STEAM ROOM FOR ANGER
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Why can’t Oncologists admit that the meds we take to save our lives have more than just a few side effects? I’ve been waiting for a month to get answers about my foot pain, finally get an apt with an orthopedic and he says that my feet are in great shape and it is probably the medication. Good grief! That’s what I said in the first dang place! X-rays look fine. No arthritic issues there. No flat feet. No problems that he sees at all. But at least he told me what kind of insoles to get so I’m not spending a fortune on something that might not even help. Ughhhhh I know that’s nothing but dang it, why can’t they admit it when we ask questions!?!?!!
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Well I’ve decided the reason they won’t admit it, is because they have nothing ele to offer us. My feet and knees got so bad I had to quit the Femara. Not to mention my eyes were deterioriating. I felt crippled and a short walk to the bathroom was a hobble.
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I think they take the mentality that bc there are sooo many side effects they tell us about the common ones, and then figure they will deal with whatever ends up happening. Everything is a possibility but everyone is different...that’s the answer I always get. Now ever ache and weird thing going on my mind scrambles between is it mets or se? I have this pain my back and recent scans didn’t show anything so who knows what’s going on there. Cancer is like a shitty circus.
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Amica, do not take the word of office staff as being correct about your 'rights' to medical service in Canada. Ours is a publicly funded system, as such the medical care YOU get is YOUR choice!
There are too many players, with too many egos, in our system in my opinion and if you do not advocate on your own behalf, yes, you will fall right through a crack. But DO advocate. I know it does not come easy to stand up to the people in the white coats. But here's the thing to remember , they are in the service industry! They are there to serve you and yes they forget this and get all full of themselves and their own importance. It is perfectly reasonable to tell your on that since he/she is not interested in working with you to address your concerns, can they kindly refer you to someone who is? Your oncologist does have a boss - find that person and squawk loudly! In this country you do have rights and freedoms (and responsibilities). Right and freedom is to not be stuck with medical care you don't want. Responsibility to make a fuss when one is required. Act in a way that is not comfortable and then blame it on the hormonals you take!
I can empathize. I quit my regular doctor because he just didn't give a shit about anything. Have better doctor now and LOVE him! Do not settle for less!
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Hi all - I'm feeling much better with the antibiotics working. Hoping to have chemo next week. The Oncologists were all aware and advised to go to urgent care - will def get them to phone down next time so I don't get the stupid response form Urgent care.
MeToo14 - It was the Woolsey that evacuated us from Westlake Village. Luckily the fire swept past our home, by about 1/3 miles over the ridge. Looking at the maps we are so lucky - and thankful to the skills of the fire service - the fire was kept away and no homes in our immediate neighborhood were damaged. I do have a friend who has lost her home - I cannot imagine the stress.
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Thank goodness your home was spared. I am deeply sorry for your friend and all of the people out there who lost their homes, but also loved ones that are missing, and loved ones lost. It's Terribly hard to watch the coverage. 💔🤲🇺🇸
Glad you're feeling better darling. 💙~M~
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Air quality is horrible for the 8th day in a row. The camp fire up north of the bay area smoke is from SF to down to San Jose. They say if you are going to be out longer than a few minutes you should use the N95 mask which is all sold out. This is to Tues at this time. 58 deaths, 300 still missing, over 50000 evacuated. Worst fire in ca history.
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I'm so sorry for all our California friends and family.
We have heavy rains, snow in northern and western areas of NJ, and flooding.
We wish we could send our rain to quench those fires.
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Heres an up to date story on the fires...
https://www.cnn.com/2018/11/15/us/california-fires...I was in the South Bay last week. Unhealthy air level 4, bad as Beijing. I’m going to order N 99 masks for the future.
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Thanks for your replies and support. My story is so pathetic I don't even want to explain anymore. When I try to fix things, it just gets worse. Yesterday, I tried to go through my family doctor, to explain how there didn't seem to be any coordination of care or communication between my doctors, including her, because she too was part of the bone doctor debacle---BIG mistake. She got insulted, she said I was inferring she was "inept", and said I should look for a new family doctor. So she fired me as a patient. So it looks like I'm just not good at this complaining stuff. Hey, maybe I just totally suck, and am an awful person, I don't know.
A big part of the problem was that they would not let me speak directly to my family doctor; I had to to do it by leaving a message with a receptionist, and the social worker.. I did not want to do this, because I know by the time they wrote down their versions of what I was saying, it could be distorted. But they insisted. They simply would NOT let me speak to my family doctor. When the doctor finally called me she sounded livid. So now I don't even have a family doctor.
There are months long waiting lists to get a new family doctor in Ontario. You can't pick your doctors here, at least I haven't been able to, you put in an application, like applying for a job, and then wait months, and they assign you a doctor. It's a different system than the one I am used to in the U.S. Doctors here don't have to earn your business. There are huge waiting lists for all services, patients can be treated like dirt and they are. (As an aside, I recently noticed my vision is bad. It turns out that at only age 60 I have very quickly developed bad cataracts, likely caused by my years of being on aromatase inhibitors. The soonest an eye surgeon can see me is next JUNE, and that's not even for the surgery, it's just for the assessment appointment.) This whole system here is a disaster.
I don't even care anymore. Like I said, I give up. I had thought I might ask at my cancer centre for a different oncologist but given how my family doctor reacted yesterday, I don't want to risk getting fired from that place also, especially since I already know I can't get in at the other cancer centers. Sorry Canadians, but I hate Canadian healthcare. It's a joke.
I am so sorry about the fires in California, and hope that any of you affected stay safe and sound.
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Amica, I have no words. This is beyond horrible! I am so sorry.
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Amica the treatment you have and are receiving is awful. I’m sorry you are experiencing this. I don’t know the Ontario system at all but do you have nurse practitioners there? In BC if you don’t have a family dr you can see the NP through the cancer agency and they will follow you just like a family doctor would and can order diagnostic tests and refer to specialists. Hearing your stories just makes my blood boil. It’s not the first time I’ve heard the Ontario system is horrendous. You don’t need this crap. ((Hugs)
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Rosabella:
I ordered these from Amazon when I was thinking I wouldn't get the Neulasta.
I had to order them because most shops only carry masks designed for adult men and I needed a smaller size for the mask to seal properly.
I wanted N99 masks but I couldn't easily get them in the right size with a valve.
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Jcia, to my knowledge that's not the system in Ontario. You need a family doctor for all referrals etc. I still have my oncologist, but she's not going to do referrals for my eye surgery or for things like that. Anyway, I'm used to not having a family doctor. I had to wait about 7 months to get one, and there are walk-in clinics, but for some reason they won't do referrals. Oh well, I'll figure something out. I do think it is rather cruel for my family doctor to drop a patient with Stage IV breast cancer, I'm actually kind of stunned. She said she would continue to see me until I get a new family doctor but I don't want to see her knowing she hates me and wants to get rid of me. I can't even imagine how strained and uncomfortable an appointment would be.
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Amica:
I'm sorry you have had such a horrible experience. Did you previously have a good rapport with her? If so, is there any chance of explaining to your family doctor that there was a miscommunication?
My surgery almost got cancelled due to a miscommunication despite the fact that I stated nothing about canceling in my original message that I left with the receptionist. Thankfully the coordinator called me to confirm beforehand.
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Amica, it is very cruel. I wouldn’t want to see her either knowing that. Hopefully you can find one that you like. What a terrible thing she is doing and you don’t need the extra stress from this. (((Hugs)))0
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WC3 - I don't know. Previously the rapport was OK. It seemed to have gotten worse once I was diagnosed with the recurrence. I felt like she wasn't comfortable with it. At the same time, I became a more demanding and needy patient, I'll admit that. It didn't help that I wasn't getting timely test result updates from my oncologist, like my PET scan results, so I would end up calling my family doctor for those results, and I think she thought I was burdening her staff, actually I know that, she said that to me yesterday. But then that goes back to the oncologist who was not providing me with test results as she should have. Or the mixup with the bone doctor; my onc thought my family doctor should have been dealing with it, my family doctor thought the onc should, and so neither one would deal with it! So it was like a circle of dysfunction. And so all of that combined...it just seemed to go south...
thanks for the support jcia and WC3 ---
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Amica:
If she was not up to having a patient with your medical needs then maybe it would be best to go with a new family doctor.
Her "firing" you might be a blessing in disguise.
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ScWilly, we too hot incredibly lucky, we live in Thousand oaks and it came so close. I'm sorry for your friend, I can't even imagine what they are going through. My heart goes out to to everyone living with these fires.
Mominator, though I live in California now for 20 years I grew up in Brigantine, New Jersey. I am very familiar with just how bad the storms and flooding can be. I hope you and your loved ones are safe.
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My family doctor changed her mind. I had an electrocardiogram on Monday, and there is some kind of blockage, my body is falling apart it seems, so she just called and is referring me to a cardiologist....so I guess she had second thoughts. So that's that. I could have done without that drama...but I know I am at fault too. I need to stop calling the doctors when I am upset, make sure I only leave messages when I am calm, cool, collected. I've just been having a hard time because as I've written in the cats forum, my emotional support pet, my best most-loved cat friend ever, died on Saturday, and I've been a mess ever since. It is what it is, but I appreciate the chance to vent on here and the support I received. thanks.
Since this is the steam room and the only place I can vent, even on this, I will add that this was yet another failure on the part of my oncologist. Prior to starting treatment, I asked her if I shouldn't have my heart checked out, since I had been having palpitations, where my heart beats really fast and feels like it's going to burst out of my chest, and she said, "no that's not necessary." So I went to my family doctor and she at least did the right thing and ordered an ECG. My oncologist continues to get an F.
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Amica, I still think your doctor takes a lot of the blame. You are going through more than most right now. You doctor, imo, should at least attempt to be more understand to that fact and that you may not have all your shit held together in a nice neat bundle all the time. Sorry about your cat
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Idiots...Cancer tx can mess with the heart. They should already KNOW THIS.
L
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I hate this disease. Yes I've taken trips, spent more said more and done more because of it that have been good. But after a recurrence my nerves were shot and of all things, I let my stupid but wonderful part time job stress me out. My straight A wonderful 9 yr old kid came home from a birthday party tonight he'd been soooooo excited to go to all week and he was quiet, bummed out and depressed. Apparently some of the boys teased him about his lunch playground buddy who just happens to be a sweet wonderful Tom boy girl. He also farted and got teased (he felt mildly better after DH informed him that guys will soon love to fart to impress each other and make each other laugh, it becomes a sporting event by 8th grade). I feel like I've been a piss poor example and shit influence on my kid since he doesn't know how to take a joke and just roll with things. I'm too serious with him and trying to impress so many of life's lessons while he's still little because I know my and his odds aren't great at me being here in 10 yrs. Scew the odds. And screw this damn disease.
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Right now, I am embroiled in the application process for my new funding for my drug. Lots of emails, forms and (I hate this) phone calls. They would rather do phone than email but they will just have to get used to how I operate. It is SOOOO commercial. They have already charged (pending) our credit card with the first month ($49.95, sounds like a blue light special at K-Mart) plus $60 processing fee. The organization is called (wait for it) "Advocate My Meds." Grammatically cringe-worthy. It has a ! at the end but I refuse to type that. Up the ladder corporately is Patient Assistance Programs. My latest two emails have come from them with the return email address "missinginformation." Not too much pressure. I just printed the 21 page attachment that has several duplications of what I have received before. One step up the corporation ladder is RxSolutions who openly, on their website, say they "support pharmaceutical companies," "improving their bottom line." Like they need help. I have a bunch of stuff collected in files on my computer for emailing back to them. I just have to pick out the pages (of the 21 page attachment) that need to be filled out and scanned to be ready to send to them as well. Big honking project appropriate for Thanksgiving weekend because it keeps my stomach in a knot so I won't eat too much.
Happy Thanksgiving everyone. I'm fine, really. The drug is working or I wouldn't be doing this, right?
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JAYCEE, I feel your pain, but unfortunately, that's our world now.
Sadly, I can't eat rich foods anymore because of the chemo. I get dyspepsia (not so much GERD), and have to take Zofran and Med MJ to quell it...and don't even mention deep fried foods, sigh. We went to a wonder Creole restaurant for my DD's b'day and I only had ONE boudine (SP?) and 1 and 1/2 small hush puppies, and that was enough to keep me up ALL NIGHT!
But, darn it, I'm going to have a tiny piece of my traditional T'day homemade Lasagna and a small slice of my scratch-made pumpkin cheese cake with ginger snap crust...and belly ache be damned!
Good luck w/your paper work,
L
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7of9: Why are people so mean? What do they get from it? Your son deserves nothing but a good life with great friends. Sending love.
JaYcee - I hate paperwork. And what the heck - the processing fee is more that the cost of the drug! So stupid.
LIta - I wish you a wonderful time and as little pain as possible for your Thanksgiving. Ive got nausea and stomach issues loosing all my TG dinner which was only about a 1/4 of what I would normally eat. Must try to work out what I can or can't eat.
I've been back to urgent care the other day after my previous shenanigans. I needed an ultrasound on my liver. This was arranged quickly by my MO due to high liver markers and my bilirubin creeping up. Sadly, it meant no time for her to get results back to me that day(it was done at 6pm as I had to wait after easting) So we were told we must check into Urgent care and a doc will let me know the results What a palaver it turned out! We waited 3/4 an hours - not to bad - only to be told by the nurse the urgent care doc was not comfortable in giving me my results and I added to wait for my MO! Well that was all I wanted to do - but everyone - checking, ultrasound tech, booking clerk - said we should wait. Now I was in a worst position as I feared it showed something really bad. In the end my MO rang early the next day - and the UC didn't show any blockage - its just the cancer getting in the way (odd to think I felt this was good thing but hey thats cancer life) Re-0naming Urgent Care - to Scardy Cat Care!!!!! They definitely don't have the best doctors in there! I love Kaiser - but have had problems with Urgent Care quite a few times.
Love to all
Sarah
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Okay, I have something to bitch about. I had a BMX 18 months ago. I chose not to go thru reconstruction for several reasons. I keep seeing posts from women who had recon and they mention feeling "normal" and that seems to be one of the reasons for having it done. Just because I now don't have the two breasts I carried around for 70 years doesn't make me any less normal. If recon makes others feel more like they used to be, great. But I don't feel any less feminine or "normal" just because I don't have breasts anymore.
I know I am being sensitive about this, but I had to say it.
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Snickersmom, I think what feels “normal” is different for everyone. I am one of those people who said that reconstruction made me feel normal, but that was only after living for a year with one breast. I thought I could handle being half flat, but I felt lopsided and even though I never wear clothes that show it, I missed my cleavage. So, yes, reconstruction made me feel more normal, but it doesn’t mean that I would consider women who do not choose reconstruction abnormal. Whatever you are comfortable with is what counts.0
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snickersmom, I have a reconstruction that looks beautiful. But I feel as far from normal as possible. If I didn't want to avoid another surgery, I'd take these out in a heartbeat.
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If I was older like over 70 I probably would have skipped recon. But i was a dd and 50. It doesn't look normal as i opted not to do nipple tatoos but my ps did a great job that under a shirt it looks c cup nicely lifted. I don't wear bras anymore, no need. But it doesn't feel the same. Everyone has their thoughts. Stick with what's right for you and don't bother trying to explain to others questioning. My fam doesn't know about my bc stuff. Saves me from a ton of anxiety and stress.
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