STEAM ROOM FOR ANGER

Parrynd1

Macb, thank you! This sounds very promising for people and pets. I wonder if we should both try it. Something to add to the research pile for sure. At least there are options...I’m glad I posted about this, we just feel overwhelmed as it is and didn’t even know what or where to look.

Amica

OK, so I find out on my own that I should be on medication to stop my bones from disintegrating due to being on aromastase inhibitors, for decades, and now newly on Letrozole. I take the initiative to see a bone specialist that I was referred to by my family doctor. When I meet with her a few weeks ago my oncologists office has made no effort to send her updated reports, she knows nothing about my Stage IV diagnosis and the new medications I am on . The visit is close to a total disaster, I had to wait THREE hours to see her, had to knock on her door to see her, and it turns out someone had conveniently forgotten to add me to her list of patients. But at least she agreed to see me, and said it was very important that I get on Prolia--like yesterday.

So I tell my oncologist a week later, and tell her that there doesn't seem to be much communication between the members of my health care "team.", and could the onc maybe give the bone doc a quick phone call so everyone is on the same page, and there is some patient care coordination. I rehearse with a social worker a tactful way to say this to my onc. I ask the social worker, 'what if my onc says no.' She laughs and says, "no responsible doctor would refuse this perfectly reasonable request." I see the onc. I give my little rehearsed,, oh-so-polite speal, "could you please give the bone doc a quick call to communicate and coordinate my care." I ask her politely twice.. She says NO. No, she will not take 5 minutes to phone the bone doctor. She will not take 5 minutes to make sure I am getting the right medication. No she will not communicate with the bone doctor.

I give up.

bella2013

Amica, I am so sorry this happened to you. There are no words to adequately describe your Oncologist’s behavior.

Sending you a huge warm hug💜.

Artista964

time to find another onc.

Lita57

Amica, find a new MO immediately. You don't need this.

I had to dump my PCP because she was a real b#&*h c%@t and refused to order scans for me so I could get my initial dx. And she had a terrible disposition to boot. Real piece of work

Yhere are good drs out there and bad ones,too.

L

Amica

Problem is in Ontario, you can't pick your oncologist. You are assigned one. I've tried to transfer to two other centers, refused at both because I don't live in their geographic catchment area. I may be able to request a new onc at the the center I am at now, but I don't believe I get any input into it, I don't get to select. It could be even a worse one. But I will see what I can do. Thanks for your words of support though.

Parrynd1

Amica, you definitely deserve better care. I would be the squeaky wheel till you can either get a different MO or till she cracks and does her job the way she should.

WC3

Amica:

I'm sorry you have deal with that. I had a similar situation with a professor once who wouldn't coordinate a test I had to take with the proper office and acted like I had asked of them something unusual in a confrontational way...I hadn't. My request was very usual and I asked nicely. Their refusal and the way they refused was very upsetting and bizarre and I had to go above their head to get the issue addressed.

In my case I think the professor had some mental health issues. Did your oncologist say why she would not put in a call to the bone doctor?

Mominator

Amica, I'm so sorry for your situation. 

I understand that you are assigned your oncologist. Ask you social worker what are the next steps in changing oncs at your center. Perhaps there is a patient care advocate or nurse navigator who could help? 

Agreeing with Parrynd that you should be the (politely) squeaky wheel till you can either get a different MO or till she cracks and does her job the way she should.

Gentle hugs and Good luck

candy-678

Amica-

I agree you should ask your social worker what the next step could be so you can change docs in your cancer center. Also, is there a system in place to voice your concerns about this MO's decision?  Go over their head, so to speak.  Or as Mominator said, a nurse navigator or go-between to advocate for you and find out the "why" that the doc won't make the call.  How about you asking the bone doc to make the call to the MO?  Would the MO come to the phone if the bone doc initiated the call?   Sorry you have to deal with this sh@!.  Crazy that the patient has to figure this out. Good luck. Keep us updated.

Scwilly

Had an annoying trip to urgent care this week. I went to my chemo sessions but we decided to cancel as I had a v bad chesty cough. So I went to the Urgent care in the hospital to get something for it. I checked in and settled down for a wait. Then I realised people were going in before, one even directly from the checking desk. I was exhausted and just wanted to go home. I exclaimed loudly "Why can I not be seen - I've got CANCER" (I have rarely if ever used the Cancer card but it just came out) and then I burst in to horrible tears. I appologised to the lady going in as it wasn't her fault. I was seen next. People were saying they were probably waiting for a specialist to see me. However it was an ordinary visit, Xray in case of pneumonia (negative) and then prescribed Antibiotics, steroids and some strong cough medicine - all by A PA not a doctor - which was all I wanted. No specialist in sight. So wrong they couldn't even take me in and let me lie on a bed, I was exhausted. (with both the cough and the fact we had been evacuated all weekend because of the fires in my area) At home now with meds doing their stuff!.

Parrynd1

I know trips to the ER usually end up being at night, BUT in the case that it isn’t time for bed I’ve called my MO and they put in an order for me to be seen in the ER. I am fortunate enough to see an MO who is at a large hospital so I don’t know if it works differently when they are in different facilities. This has saved us so much time though! Waiting in the cold waiting room around a bunch of miserable people who don’t feel good for hours sucks even on a good day!

Scwilly, I hope you feel better soon and that your house is ok. Don’t feel bad about pulling the cancer card out either. I did once when I was scheduling a dentist appointment and needed it done before starting chemo forever. We should get something good or at least easierfrom cancer right?

MeToo14

ScWilly, I'm so sorry you had to go through that. I had a similar experience at a business and I know it was because I looked like a cancer patient and no one wanted to talk to me. I can't say that was the situation with you, they certainly should have accommodated you though. I hope you feel better very soon. I too was evacuated because of the fires (whoolsey). I hope you and your family and home are all safe.

Lita57

Amica, at the very least, I would file a GRIEVANCE against that MO. YOU are the patient and have rights, and a specialist should review what you have.

L

Egads007

Amica - I was treated in Ontario and switched up my MO through my PCP. Talk to your PCP

Micmel

scwilly~🤲💙🌧 hoping your Home is ok. Hoping rain comes your way in California! I am sorry you had to go to the Er. Not our favorite place. I’m sad to hear you in pain. Ive been so close to going myself with my bad flu. Just wanted you To know I’m thinking of you!

WC3

Scwilly:

There's nothing wrong with playing the cancer card when you have cancer and are not getting your related healthcare needs met!

Your cough could have been from chemo related issues...some chemotherapies can cause fluid in the chest, so it was important someone saw you quickly.

Did you let your chemo nurse know about the cough? At my center the doctors are right next door and they will call one over if a patient is unwell.

TaRenee

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!?!?!!

marijen

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.

Parrynd1

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.

runor

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!

Scwilly

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.

Micmel

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~

Artista964

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.

Mominator

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. 

marijen

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.

Amica

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.

runor

Amica, I have no words. This is beyond horrible! I am so sorry.

jcia

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)

WC3

Rosabella:

I ordered these from Amazon when I was thinking I wouldn't get the Neulasta.

Honeywell N95 Respirator

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.