STEAM ROOM FOR ANGER
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I am so disgusted with my family doctor's nurse. I am a 20 year Stage 2 survivor, I had my original treatments in the U.S. where I used to reside. Now I'm in Canada, and recently a fast-growing 30mm x 40 mm "suspicious" for pathology lymph node has been found below my collar bone on the affected side. I am scheduled for core biopsy next Friday the 13th (yay.)
I called my doctor's office today to ask if maybe I should have an excisional biopsy instead of core biopsy since it seems to me they are going to have to remove such a large mass eventually anyway before it grows and impedes blood vessels like my jugular vein etc. And that way they could see the margins etc. The nurse actually says to me: "If you choose to have an excisional biopsy and then it turns out not to be cancer, then you'll be charged for cosmetic surgery." Now what kind of bullcrap is that? I have a radiologist's report that the mass on my chest is "highly suspicious for a pathologic lymph node", he recommended biopsy, the mass is HUGE, it is situated a few inches above my original tumor, and if it turned out to be benign I would be charged for a cosmetic procedure?! This nurse must be nuts. This would mean anyone in Canada who has a biopsy for a suspicious mass, and then has the good luck for it to be benign is then charged for a cosmetic procedure?! That cannot be true. A medical system CANNOT work that way.
I also asked this idiot nurse if it would take a long time to get a referral to a cancer center because I was concerned about wait times in Canada and her answer was, "If you don't like it, why don't you move back to the U.S. and get your cancer care there?" Now what kind of BS reply is that to a person who is in high distress and struggling with a likely cancer recurrence after 20 years. So rude and unfeeling it just makes me want to cry. A receptionist at the same office hung up on me when apparently I was talking too loudly. I'm friggin' upset as hell, so excuse me if I raised my voice and wasn't all smiley and pleasant over the phone. I just cannot believe the staff at this place.
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Oh, Amica! I am so sorry. What a horrible experience! I wonder if there is less incentive to be sensitive in a non-competitive medical system.
Wait times in Canada can vary significantly by location, but compared to what I read from Americans, they are longer.
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Pi-Xi Thanks for replying. Yes wait times area definitely longer. When I was diagnosed in the U.S. I had a biopsy and results within days of a suspicious mammogram and ultrasound. Here things are taking weeks.
I have noticed the Canadian healthcare staff are not as pleasant, because they don't have to be. They don't have to worry about customer service because they don't have to compete for patients. Also they seem very very rushed. I am not saying the American healthcare system is perfect, far from it. It is not equitable because of the huge problem of the whole health insurance mess.
In my opinion there should be a co-pay for healthcare in Canada, like just $10 a visit. And very low-income people would not have to pay it. It would pump MILLIONS of dollars more into the system, and allow them to hire more doctors etc. In the U.S. people pay WAY too much out-of-pocket, in Canada, I feel that people could pay just a little MORE out-of-pocket. Most people could afford a $10 fee per doctor's visit.
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hahahahaha, I am having such a nice laugh finding this. I did a search on sugar, as I wanted to see how many folks still eat sugar. I just polished off a nice Trader Joe's Birthday Cake bar and I find myself doing it about 2x a month. I also have a girlfriend that takes me out for pancakes and bacon once a month for lunch. I am so tired of feeling guilty. It is really only me creating the guilt and I want to lose the guilt and feel free. Lula, I love #5. I love green tea and have had about 10 cups a day for over 20 years. When people who know I drank that much find out I have breast cancer they say "well, it might have caused it, or it might have kept you alive." Really?
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Here’s another good one that came up on FB the other day...
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What naughty, naughty cancer patients, consuming cakes, cokes, bacon, and wine. I'm glad I don't do that (she says while downing chocolate pudding, man I love this stuff). I really do live healthy as I believe it helps me, and I also know that happiness contributes to health. And this chocolate pudding is a little bit of happiness in a bowl.
Joining in on the steam regarding how these phone calls and long wait times and correcting others' mistakes and trying to keep up with everything impinge on our precious time and peace of mind! And phone trees! I hate hate hate phone trees. The chipper voice never gives me an option that describes my need or question, and they take forever to navigate. Then if and when I get a person, they ask me all the same questions I just answered for the chipper voice. I spend hours of my life each week on this garbage, I kid you not.
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Continuing on the phone call mess, it took me two weeks to get a med called in by my urologist. I called on the Mon before July 4 and left a message. No reaction at all. Then I had a plan. Call when they are closed. I called on July 4th. I got a very nice woman from their answering service. I trusted her more with my message than people from their office. Got a call back the next day. Actually, TWO call backs. And the rx got called in TWICE. I think a couple of nurses are having a turf war because my NP left and things are shaking up a bit. It took several days for the rx to show up at the pharmacy. Well, two rx's. Walgreen's balked because there were two and didn't fill either. They said I was refilling it too soon. WHAT??? That took a while longer to straighten out. I finally got the pills, none of which I have taken for fear of side effects. Ah, life with BC.
Then there is my specialty pharmacy. They call me to set up delivery of Ibrance every month. I repeat, THEY call ME. Then they put me on hold. WHAT??? I say again. THEY called ME. I understand when I call them. They put me on hold but if they call me, I shouldn't be put on hold.
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Great idea Jaycee. Call off hours. I’m going to try.
After 3 calls to nurse and an email to the doc I was in trouble.. really. My mo told me GP. should be setting up the port placement. It took 3 weeks to accomplish. (3 rd port) 4th attempt. 2 screwups plus infection 13 yrs ago. Now I called nurse this week regarding pain issues and MRI results. No response to the question what did the mo find out after talking to the radiologist?..last week.
Now I see my tumor markers doubled and the report was sent to another mo in the practice. So Sunday I will call email etc and hope my message gets through. I have been with this mo for 13 years and hate to change. Her staff must have a lot of infighting going on. I feel the vibes. The main nurse is always in the halls chatting with other staff about weekends etc. And then there is the nurse navigator who directs your calls. I write out my message so I can repeat exactly..at least 3 times. She never gets it right. Too many layers.
I know people are in worse shape than me. How do they ever navigate these systems. I’m usually a very polite person but I am about to loose it. That’s a whole set of issues to bring to oncology conference. Communicating with the patient. Wow that felt good to vent. My husband doesn’t want to hear it. I guess I don’t blame him.
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Cross posting but I love this poem so much. A very good friend posted this poem on Facebook this morning. I think it was for me. Now, I give it to you.
"Hope" is the thing with feathers
BY EMILY DICKINSON
"Hope" is the thing with feathers -
That perches in the soul -
And sings the tune without the words -
And never stops - at all -And sweetest - in the Gale - is heard -
And sore must be the storm -
That could abash the little Bird
That kept so many warm -I've heard it in the chillest land -
And on the strangest Sea -
Yet - never - in Extremity,
It asked a crumb - of me.0 -
That's a beautiful poem Jaycee49
Regarding all the communication problems, I can relate, isn't it amazing that technology is so advanced, everyone has a cell phone, medical offices and pharmacies all have sophisticated communications sytsems, communications are supposed to be easier than ever -- but it often seems more and more difficult just to get basic things done! You have to communicate with a bunch of different people just to get your message to the person you are actually trying to reach, like the doctor, and then by the time you do, your original question or message has been mangled by a bunch of intervening message takers. And God forbid a human should ever just answer a phone anymore at any medical office--no -- it's the dreaded phone tree! And sometimes your choice isn't on the selection menu and you have to press a choice you don't want, and then maybe even start over lol It's madness.
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Working the system is always fun. And I'm willing to work within it. To a point. When I'm about to explode I e-mail or text my MO. It's funny. He hates technology (read the EHR at his hospital). So he's famous for messing up prescriptions and orders and the like. And he doesn't respond to pages from the pharmacy. But lo when I text to tell him I've been here an hour and could I pretty please have my meds so I can go home I have my meds in 5 minutes.
For the messed up orders I bribe his clinical assistant. I send chocolate every six months. Works like a charm. I can then e-mail and say "can you make sure he did this right?"
He just doesn't realize the impact his hate hate relationship with the EHR has on others.
But here's my rant for the week. I'm signed up with the MBC Project. They send out a kit to take to your next blood draw. The phlebotomist is supposed to draw one extra tube of blood and you Fedex it back to them. OK. I take in the kit. The person drawing the blood says to me, oh, we can't draw tubes for some other place. I decided not to explode. Instead I politely pointed out that the MBC Project is run by a doctor AT THIS INSTITUTION!!! She eventually called her supervisor and received clearance to draw the extra tube of blood. I'm considering writing a letter to the PI describing my experience. If this hospital (DFCI) expects other labs to draw blood for them, they should be willing to draw blood for other research groups. It's a hideous policy.
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RANT: I am tired. I am nauseous. I am tired of being tired. I am changing my diet, adding in new vitamins, I want to exercise, but cleaning the windows hurts. I was finally starting to feel better then I caught a cold, lost my step dad to this God awful disease and I feel nauseous every day. What's frustrating is not knowing the cause for the exhaustion and nausea and the gravel doesn't help the tiredness. I am too young to be sleeping and laying around all day!!! My kids need a mom not a zombie!
Thanks
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you're not alone vampeyes. And I am truly sorry about your step father. My step father is an incredible man and so i am beyond sure you feel the same. Sending hugs to you. I am 48 and feel 88. I am very sorry for your loss. So very sorry. Much love ~M~
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Vamp, you are dealing with so much right now that it's understandable that you are exhausted. You need to grieve & then you will begin healing. For now, concentrate on yourself & the people you love. Take care of yourself & each other. Do something that makes you happy - visit a friend, buy yourself some flowers, have a glass of wine while you watch the sun set.
You can get back to everything you need to do when you are feeling stronger. In the meantime, let your sisters here lift you up.
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It took me a year to get over the fatigue and nausea from radiation. Hang in there.
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I'm exhausted all the time too. This is my OFF week, and I still feel like CRAP!
I fall asleep in the La-Z-Boy every night, and then when I get up to actually go to bed, it takes me FOREVER to fall back to sleep.
My eyes are a mess because of dry air and the chemo. Have to keep using eye wash and gel drops.
So aggravating.
L
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This is truly the best group of women, thank you all for your kind words. Hopefully I have fixed the nausea by planning on taking the Tamox with food this am, we shall see!
Oh Lita, I am so sorry you have to go through this. It makes me so upset that all these wonderful people get this terrible disease and all those jerks out there are happy and healthy. {HUGS} hun you are in my thoughts and prayers with all the others suffering.
As awful as it sounds I often wonder if there is a cure for cancer and this is the governments way of population control.... all about money and power.
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Vampeyes - EXACTLY. I'm so sick of seeing/hearing about so many wonderful people getting BC (or other cancers). Then - it seems like all of the cold-hearted - JERKS - never get cancer.
My DH - for one. He says he loves me - but - definitely does not treat me like he does.
Last night - I was having trouble with the TV in my room. (we have separate rooms because he snores way too loud for me to get any sleep). So, I went to his room - to watch TV. When he asked me, I told him about my TV - not getting a signal.
He goes into my room to fix the TV, but not without, criticizing me about the state of my room. It's pretty messy. But, it's not like I have a lot of time on my hands to keep up with cleaning or organizing it. I work Full-time, am a mother to an 11 yr old, commute 3 to 4 hours - daily. And, had stage 3 bc.
He knows all of this - but does NOT care. He sits in the living room - watching some stupid movie - while I run around taking care of things.
He is FAT and I never complain to him about his weight. NEVER. Between the two of us, honestly, I'm pissed that I got cancer - and he did not.
But, it's Ok for him to tell me that I live "like an animal". WTF. Rude as f*ck.
When he said that - I put on my work-out clothes and went to the gym. He was like "why are you going to the gym??". To get away from you - #sshole.
Not talking to him tonight - either. He can kiss my @ss.
Sorry, but I am STEAMED!!!
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DancingElizabeth,
WOW! Your husband is a piece of work. I am so sorry you have to deal with that! HUGS Hun! It infuriates me hearing of all these men treating their spouses poorly or leaving them because they can't handle the cancer. Such crap!
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Thanks Vampeyes... I needed the hugs - too!!!
I feel like - if he gets cancer or sick - I will remember how he's treated me...
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wow vamp. He's an asshole! When he asked where you're going in your gym clothes, you should have said to the gym so i wont get fat like you.
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I Love It - Rosabella!!!! Perfect Response!!!!
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Elizabeth - you wouldn't treat him the way he treats you because that's not your personality. I doubt you have it in you to be a jerk like he is. Maybe he should sleep somewhere else if he don't like how you are managing everything on your plate! 💞
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Rosabella, re "wow vamp. He's an asshole! When he asked where you're going in your gym clothes, you should have said to the gym so i wont get fat like you." lol
DancingElizabeth -- what a jerk he's being!!!
Take care of yourself, you are a strong and valuable person who deserves loving compassion and care from those around you. If he won't supply it, we on here stand in solidarity with you and personally I deliver a cyber kick in the butt to him....Amica
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I am also shocked that someone would have the balls to treat someone with cancer that way,no less a wife. Good grief. Can I have a half Hour with him and my sons large crowd of friends. ??? You don't know us, we don't know you. Maybe he could use a good hacky sack game with him being the hacky sack of course. I promise he will still be recognizable a little and he will still be able to mumble how sorry he is to you, that I can promise. These boys teach people really well how to play hacky sack, some of them learned in cell block 6. No.....I'm totally Kidding. Or am I? Yes I am. But I would Like to kick him in the shin several times. You already have a possie ready to go! Hugs to you sweet woman. You are worth more than anyone could ever express. Let his rolls roll somewhere else... and watch you slip away, when some decent man scoops you up!
Much love ~M~
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Feel like venting a little:
Cancer f you. You are unfair. Striking any age any gender. Being only 30 just feels like and extra kick in the gut, but you go after ages younger than that too. Monster! And why...why did you have to go to my brain you stupid cancer. You already changed enough of me for the rest of my life Iraq time we met. It wasn’t enough for you when I was 28 years old? I just wanted to finish my bachelors degree...I had 9 months left till I would have been done that time. I waiting so long to be able to afford to go to college. I knew what I wanted to do since I was a little girl. It wasn’t being a cancer patient! And not to mention maybe actually getting married to the most beautiful, kind, loving, smart person who makes up the other half of my soul. You interfer with that as well. We did the responsible thing and were waiting till we both finished school. Always super careful not to get pregnant before then either. And then you couldn’t even stay NED for a few months...you really suck. Now I’m hoping I even make it to our 10 year anniversary 6 months from now in January to have a weddingish ceremony. Ok, so we still plan on getting married, but it can’t be a real ceremony. I’ll lose my insurance that’s covers all of the $500k plus and rising cost the war with you incurred. Everything has to be planned around treatments that hopefully give me a year or two. Plus palliative care since now you are ‘uncurable’. Treatments make it too hard, unpredictable, and unreliable to work so money is tight and the dream wedding has to be compromised because of you again. I can’t even think about my student loans yet. But, I fought you. Those few months you gave me I was back in school. You tried to come back in my very last quarter. Take away the prize right when I was at the finish line graduating with high honors. Cancer you really f’ing suck. Kids? No chance at that. You had to be triple negative and nothing less than grade 3. Not that any cancer is good...you all suck can go die in a fire for all I care. The world would be a better place without you, cancer. And you’re so selfish! I know I have to deal with your shit, but do you even realize my loved ones get to watch you destroy my body. It’s so fun sitting in the ER at 2am with them. Seeing them try to sleep in a chair while test results are pending. Trying to ease their panic attacks when they think I’m not breathing in my sleep. Every bruise, bump or minor ache is agony to them because hello? Is it you? Watching them watch you while they feel helpless to aide in the fight against you. You rob them of pieces of their heart, their loved ones. You’re time thief. There is nothing good about you. You make me want to scream and cry and obsess and spend all my money on a 1 week beach vacation that I wont go through with because I have to save up for stupid funeral expenses and bills I’m leaving behind on my best friend and lover. Cancer...ugh you’re just the worst. I hate you so much.
But you know what? Cancer...you can try your best, but I will try my best too. My doctors, scientists, and family. We are all against you. Brain tumor in my last quarter of thesis? I still finished and with high honors despite having a craniotomy during midterms. Nodes in my lungs? Changed my diet so you don’t have any glucose to feed off of and am losing weight so I will look even better on my ceremony day. Tumors in my breast? Well, still f you because I don’t need breasts to survive or be an attractive young woman.
Cancer, anywhere you go I will fight you every step of the way. Every tear WE shed in fear, sadness, unfairness, pain, or loss because of you, are just drops of fuel to my fire, OUR fire. Because, cancer, you really f’ing suck and that’s gonna cost you one day.
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You are my daughters age and I just want to wrap you in a cocoon of love and healing. Come and vent whenever you need to. You are right....so unfair!
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Parrynd1-
BLESS YOU!!!!!! KEEP FIGHTING!!!!! WE ARE WITH YOU!!!!!
IF THERE IS A CURE OUT THERE AND BEING WITHHELD FOR FINANCIAL GAIN, I HOPE THE RESPONSIBLE PEOPLE ROT IN HELL !!!!
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i am sorry Parry~ I am not 30 but I was only 45 when diagnosed. It's a scary scary disease and I agree and grieve with you everything you wrote. It makes me sick, I hate cancer also and I am also stage four. I have been for over 2.5 years now and I am Nead. It can happen. Don't loose focus of what you're fighting for. You're a powerhouse. I can hear it in you're writing. I wish you nothing but success and strength! Way to go graduating with honors. Bless your soul precious woman. Much love ~M~Congrats for doing what you set out to do. So strong
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Dear Clarm---- I am so, so sorry she was that remarkably insensitive to you! I bet many of us here have similar stories. It's hard enough to cope with being a BC patient without people around you adding to the burden. I wish I was there so I could give you a BC hug ( light but meaningful)
Somebody should tell your cousin she's a jerk. I suppose there's the remote possibility she really meant well but just doesn't get how that would affect you??? Either way, it's absolutely inexcusable. I don't know if it'll help you but: My brand new Daughter-in-Law's Mother has been a special pain for me; the day after I came home from the hospital, all trussed up and in so much pain I couldn't see straight, she called ( right after I'd taken a pain pill) to interrogate me on what shape my incisions were.
At that point I hadn't even seen my incisions, but knew they were extensive just from the level of pain I was having & what surgeons told me ( I had 2 surgeons working on me at once, BC surgeon + plastics guy for reconstruction/reduction--I'm guessing many here did,too) . I was mortified to be asked something so personal by someone I barely know. I also didn't like that she presumed on our brand-new familial connection. This same woman, at my son's BD party 2 wks before my surgery, proceeded to inform me how my BC surgeon was an "a-hole" ( tryna be polite here) because 2 of her friends said so! I should add she's NEVER MET my surgeon, is not her patient. I was like, "I ADORE my surgeon, she's published,is an expert on my type cancer, I vetted her thoroughly and she's amazing and I say that as an RN with over 30 yrs' experience" . Even that didn't shut her up. There are also those well-meaning folk who say straight-up stupid crap to you like "BE POSITIVE!!" etc etc. Look, I get the whole power-of-positivity thing, I well understand it both as a woman and as a health care professional but I also know the facts; that I was positive as hell BEFORE I got BC and all the positivity in the known Universe won't keep me from getting a recurrence, isn't keeping me from lightning strikes of nerve pain, lymphedema,feeling like the woman who got sawed in half in a magic show,being forced to accept I am forever altered AND I must live with the sword of Damocles hanging over my head EVERY WAKING HOUR of EVERY DAY OF MY LIFE. Some days it feels like there's little hope of my getting through a day without being sharply reminded of it, between tv commericals and loving relatives & friends who insist how strong I am and that I can get through this just fine, blah-blah-blah. I know I sound bitter, wish I could apologize for it---I'm just so, so weary of people trying to tell me how I should feel/think. I'm like---tell you what, YOU get cancer and then get back to me on all the happy hoo-hah I'm supposed to be living, ok? Some days I feel like----nobody sees ME.
Nobody sees I am living with a quiet terror. I'm guessing many here feel that way. I don't feel like being polite to people who make moronic comments about breast cancer or who insist that yoga and meditation will fix everything. Of course I realize the therapeutic benefits of those things but I'm NOT there yet. Seems like people think once you sound like yourself again, are a couple months out from surgery, you're just magically ALL better! I know I must sound angry---it's because I am. I'm angry to have cancer and it righteously pisses me off when people want to say "Oh, you're a breast cancer SURVIVOR"....nope, not even a lil bit. I'm not proven to've survived anything til I'm 15 years out without a recurrence, so you'll forgive me for being a lil yanked when people ( the medical community especially!) try to sell me that happy, politically-correct horse-poop ( <-again, tryna be polite here) about being a "survivor". There's only one place I am able to say what I really feel & think deep in my heart without getting censured for being "negative"; only one place I am free to express the icy fear and anxiety, the physical pain that seems to have it's own life, morphs and changes with time like some sort of parasitic alien life form; that place is right here.
I am sorry and angry for you, Clarm. I'd tell your cousin off but good if I was there with you.
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