Monday, November 17, 2014

What not to say

Ever suffer from foot in mouth disease? I surely have. But my gaffs are usually spoken in front of microscopes and chromatography columns..they don’t mind so much. Patients on the other hand are inspecting every detail, every mannerism and every word that comes out of the mouths of our care team. We don’t want our doctors to cry, or say, “OMG, I’ll pray for you”, we want some reassurance that this is not the end of the world (even if we can all see the giant vascularized elephant in the room). I recently asked the members of our angiosarcoma support group what their, “did they really just say that?” moments were. I’ve modified the replies only to protect anonymity, other than that, this is straight from the mouths of the patients..

1) Me to my first Onc, "I can't die, I have small children"
Onc to me, "there'll be someone there to raise them"
Onc #3 upon palpating a suspicious lump, "you're really thin, so I can feel everything, like the living dead exhibit at the Boston museum"

2) I was with my daughter 24/7 throughout her many hospitalizations. My " favorite" was a hospitalist who waited til I ducked out real quick early one morning to get a fresh juice for my daughter from the nearby Food Co-op. I got a hysterical call from her because this a-hole decided to take it upon himself to talk to her about going into hospice. I called him in when I returned and let's just say I think he's a better, more compassionate Doctor after our little "talk." I sure hope so! She was 28 and scared sh!tless.

3) Me: I am really depressed with some of my health issues like serious stuff and that my cancer friends are having problems.
Doc: I would council you not to hang out with cancer patients.

4) Me: walking into doctor office to get biopsy results.
Doctor: crying.
Me: uh oh

5) When I got diagnosed with ovarian cancer in 2012 the doctor came in whilst I was by myself, told me it was cancer and that I'd be lucky to see my next birthday, I was only 42 and also had children to raise! He then told me to have a nice evening! !!!@@ Happy he was wrong, cancer free now for 2.5 yrs!!!
And no he is no longer my doctor!!

6) When my sister was dxed in May 2012, her oncologist told her and I quote, “we’re not ready to pull the sheet over your head..but don’t plan any cruises for 2014”. She died exactly 2 years later in May 2014. She had radiation, surgery and chemo…many transfusions…and lots of procedures on her lungs and pleura. This was supposedly the best of the best in Pittsburg’s best hospitals.

7) Me: What did the tests show?
Onc: you were right you do have cancer. Aren't you glad!
Actually I'm here because my mom had AS. I actually did NOT have cancer- I fired the jerk.

8) Mine was what they didn't say. When I asked a question the answer was "I'd have to look that up in your record". We sat there waiting for more, but she was done. Never looked it up, never got back with us.

9) "Just up the dose on your nexium and it should improve." Said to my husband by my family doctor (prior to finding cancer a week later in his esophagus) who was always proactive and reactive with me but chose not to be with my late husband.

10) "Eh, don't sweat it, having cancer nowadays is like having puppies in a purse" and my 2nd favorite one was "We can do chemo or we don't have to do chemo, it's your decision since we don't really have any proof that it'll work"

11) When my hilar node recurrence appeared in mid-2012, we visited our (high volume cancer center) thoracic surgeon a few times to discuss surgical options. He is the one who performed my wedge resection of my primary.

As this was the "initial" consult for our second time around with him (hadn't seen him for almost 2 years), he did a history of illness while reviewing operating notes and scans with us in the room.

He was more talking out loud at the scans and the computer, but we could hear everything muttered. His thoughts were out loud.

Surgeon (to himself?): I wonder why this came back. The margins were excellent. What happened?

Us: (silently in our heads - your guess is as good as ours doctor)

Surgeon (to himself?) after a few minutes of mumbling through reviews: Oh...... that's why............

Us: With blank stares at each other and dumbfounded throughout the room, we didn't say a word or ask WTH

Surgeon (to us, finally): thus began the course towards many consults of him telling us that complete lung removal is to risky, time and time again

To this day, it is one of our biggest regrets to not question that awkward and ill-placed phrase! Needless to say, I am no longer quiet, and I always speak my mind now!

12) This was in Mar-2014 when we found the lesion in my liver( which turned out to be Angio) and I was setup to meet a surgeon for the resection. Firstly, he was not prepared and had not looked at my MRI results thoroughly. My husband and I had looked through the MRI CD and almost did our research on liver resection before meeting him. We had to tell him where to look for the lesion in the MRI. His first question " So, do you cough blood?" Me: "??? WTF?" No. Me: "Can we do it laproscopically?" Surg: " I think I will do an open surgery for this. I don't think it is accessible easily" My husband: " So, where will you make the incision". ( Drumroll please...) Surg: " You both are engineers. Do I ask you which plug goes where. Its the same here. You don't need to know what I do " I walked out of that room and had my laproscopic liver segment resection with another excellent surgeon.

13) So I was telling her about this group. I was asking questions about why they only do chest x-ray's and chest CT's when there have been people here that have had recurrence in a lot of other places.
She said "maybe you shouldn't be on that site so much". EXCUSE ME !!! It's my body & my life we are talking about. I LOVE THIS GROUP. I feel like I have friends that can relate to how I feel at times.
Well I didn't listen to her. I'm still here

14) Actually it was the first nurse I spoke to. She said "AS? I'll pray for you." I knew right then how serious this was.

15) My doc just recently told me In These words "u may have 37.7 mos left to live with successful treatment, but this definitely is gonna take u out""

16) My former onc: you are five years out from breast cancer and you want a final PET scan because of pain you are having? Well, if you want to we can. . .The PET scan lit up on your chest wall but it is probably fatty tissue; oh, you want further tests, oh well if you want to. . . The MRI showed something in the same spot but it's probably fatty tissue; oh, you want a biopsy, oh well, I guess we can if you want to. . .The biopsy is a sarcoma on your chest wall, I'm sending you to a surgeon here in town that only does breast surgeries. HUH????? It is on my CHEST WALL by my ribs!! Bye bye, I am going to Moffitt!!!

17) I had to see a different doc as the Group had fired my Great and Wonderful Onc Dr.---He loved his job and would spend a lot of time going over ALL of your questions. The second time I saw (the new to me Doc) for my six month follow-up---Doc--"Well, your ca was very tiny and they removed your breast so therefore you are Cured!" He saw my full page of questions---Never answered one question. Me: Really??? after having 3 different cancers? No answer from Doc. AHA---went out to car--Needless to say I found a new doctor and never went back to that idiot----!!!!!

18) Reading these posts I feel blessed at my hospital. I have awesome Dr.'s and nurses. They diagnosed it, they sent it out to make sure of the diagnosis. When told my Dr. said they had never seen this type it was so rare, they when they offered to refer me to a bigger hospital near by I said nope I found my purpose I want you to treat it and I will beat it. If another person from here gets this diagnosis they will have hope and knowlege here so they wont have to go away from home,

19) My primary care when I told him I had a lump & he said - it wasn't there last month right. Me - no. Then he checked my breast and his eyes got all sorts of wide and all he could say was "Oh My God!!" Then he said - "You need a mammogram STAT." I suppose that was my first clue this was serious. Never want a doc to say Oh My God!

20) Just as a sidebar about things you really don't want your doctor to say, when I was having surgery I heard my surgeon say: OOPS! Then I went under the anesthesia finally. When I got out of recovery I asked him what that OOPS was about. He was amazed that I'd heard it and he stuttered a bit!!

21) While on chemo for 5 months before surgery I asked "ok if I drink doc?" He replied - "Oh, I would!"

22) When my husband got sick in California this summer and ended up in the hospital, they wouldn't let him travel home on a commercial flight because he still had a pericardial drain coming out of him. They were starting to arrange a medical flight to get him home. I work for an airline, so of course I thought this was crazy. We were supposed to just fly 'my' airline home. When I said to the nurse, "Isn't this a bit overkill?" She started crying. We didn't know what to say, but we knew then it was serious. My husband died four days after we got home. She was one of the good ones - she just let her emotions get in the way of her professionalism. It's gotta be tough on them though.

23) Surgeon as he walked through the door for our first consult, "Oh No! A full head of hair! I hoped you were bald like me! [I am now! ]

24) "Why would you want to fire me, I was doctor of the year last year here at MD Anderson!" The comment of my (high volume cancer center) breast oncologist who I fired upon my AS confirmation because he failed to be alarmed or call for any extra testing on the strange growing pink bruise on my breast through two breast dept checkups over a period of a year.

25) I think I was in pain management begging them not to reduce pain meds. And I just yanked up my shirt showing the tumor it was pushing on 3 ribs on the lower left side and protruded out about 5 inches and trying to separate ribs from sterum.. i just cried out i can't live like this anymore. I know they see so much worse at (a high volume cancer center) but the little PA was stunned and let the OMG slip out. I think lesson was ya gotta stick it in their face. Draw them a picture!

26) My first visit with the surgeon that was to disassemble my face said that he had to prepare me for the worst case scenario; You will possibly loose your left ear, eye, your nose and most of your mouth. By God reality slammed me right between the lookers, I know they have to prepare you but I frickin near had a heart attack right then and there I was not even remotely prepared for this bit of news! try to imagine what was going thru my mind the day before my operation!, not to mention coming out of anesthesia! Thank God you exist!

27) Yeah, I remember when I asked how much of my forehead, "the whole left side." Ok, I need a Phantom of the Opera mask STAT!

28) My "favorite" comment was from one of the targeted therapy docs at (a high volume center). My husband was on a trial drug and was having issues with fluid in his lungs and coughing. We complained that it was clearly getting worse over the last month on that trial drug and the coughing was much more severe. She looked at us and said "Gee, it must be allergies. Welcome to Houston!" Huh?? Even then I thought "How clueless are you?"

29) "What did you have done yesterday?" this was said to my 85 yr old mother who had not had her morning coffee (no breakfast had been ordered) My mom promptly said "YOU are supposed to be the doctor- if you don't know ,you need to get out of here and find out! Also order me some coffee first! "

30) I don't have a doctor story, but my doctor had a nurse for awhile who wasn't my favorite. At one appointment, she tried to tell me I had only had two rounds of chemo (because that's how many were on my chart at (high volume cancer center)). But I had two rounds in my hometown under my doctor’s direction before I had to start having it at (high volume cancer center). She didn't seem to believe me that I'd had four rounds, not two. I wanted to say, "Look, lady, I might be bald and have a central line coming out of my chest, but I know how many times I've been through a week of chemo!" Finally, she just smiled patronizingly at me and said, "well, we'll just see what your doctor says." Then my doctor comes waltzing through the door and says, "Alright, are we ready for round #5??"

31) I had a nurse once tell me she couldn't believe me because "patients lie"

32) I went to see my neurosurgeon this summer, who did the 2 surgeries that removed my large mass that was wrapped around my spine in the thoracic region. 2 surgeries in Nov 2012...a diagnosis of AS 3 weeks later. A horrible convalescence for 2 months with a plastic, fitted vest with Velcro that I wore all day. A 6 level fusion, with rods, screws, and a cage. I'm missing now 1 and 1/2 vertebrae. This followed by 39 treatments of radiation. And then a recurrence, followed by 18 infusions of paclitaxel. Lost all my hair, etc. Trips (3) to (a high volume cancer center) for second opinion. Now, possible diagnosis of EHE....nobody knows what I have!
So, when I walk into his office this summer....HE says "you are the luckiest woman alive "! Me.......REALLY? Neurosurgeon..."well, I saved your life!"

33) I had a nurse, when I went in for surgery - who proceeded to tell me how her mother and sister both died of breastcancer, while I'm laying there being prepped for surgery. Even though I wasn't facing breast cancer, it was just oh - so -re- assuring

34) On Another prior (high volume cancer center) cancer experience a nurse said "oh you only have Hodgkins? That's the cold of cancers."

35) "I have some bad news" -- the physician's assistant at one of my first post-scan appointments. The 'bad' news was (thankfully) that my doctor was in a minor car accident and couldn't make it to the appointment that day. That's not bad news!
"Have fun with your friends" -- med student leaving me, my husband, and my sister in surgery pre-op. We actually did have fun, but seriously?

36) After my husband was diagnosed, the doctors did surgery putting a stent in the abdominal aorta to shore it up before chemo. The doctor came down to the waiting room after surgery to talk with us and said it had gone well. Then said, "now we start the chemo to buy him some time..." It hit me like a ton of bricks and was so foreboding.....

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