Bad Cancer Patient, Observations from the Chemo Chair

DoggieBytes

My Nurse navigator shared a bit of wisdom with me as I was reeling from my diagnosis, "Cancer does not give you a get out free pass". She meant that I would be going through many trials physically and medically. Her words stick with me though because a cancer DX doesn't give us a free pass on anything. It could be a snarky nurse, a patronizing Doc, comments that range from well meaning but thoughtless to downright hateful.

That being said it doesn't mean I, nor any cancer patient has to endure what is decidedly a bizarro world of medical mishaps, screwy attitudes or financial brow beatings in silence.

As I like to say now-a-days, I understand there is suffering, but that doesn't mean I have to suffer in silence.

I'll start with the most recent bit of insanity I stumbled across, touched on in a recon thread but didn't want to take it off topic, so I'll expand on it here.

A Doc was complaining that too many people want "free" healthcare. Shortly after she's trying to talk me into recon. Part of the reason I don't want to go down the recon road is because I'm totally tapped out from paying thousands in co-pays and all the unexpected third party vendor bills from the hospital. I can't afford recon anytime soon.

So I guess that means I want it for "free". If she wants me to have it so damn bad she can pay for it and supplement the lost income from my business to boot.

Why is it I'm being "responsible" when I don't buy that Ferarri I can't afford, but when I can't afford more medical bills I want it for "free".

I've always lived within my means and payed for everyone else's healthcare without complaining now all of a sudden when I'm not only dealing with cancer AND debt collectors I'm some kind of freeloader.

BAD Cancer patient, BAD Cancer Patient.

DoggieBytes

One more story for the day. Also anyone else who has been made to feel like a "Bad Cancer Patient" please share!

On my second to the last chemo treatment I found myself feeling very happy. Happy that I had gotten through the surgery and chemo. Happy that this was to be my second to the last chemo treatment. Happy that an American Cancer Society fundraiser I and my MOs secretary were working on was going well. So I stood at the nurses statin, smiling and OMG laughing, *Most* of the nurses like to see happy patients, they deal with many patients who are on borrowed time and struggling or are just downright cranky.

One nurse didn't like me smiling so much though. Nurse R (yup that's her real initial aka One Flew over the Cuckoo's nest fans), as the other nurses were smiling and happy with me said "She smiles too much".

My response was to run my hand over my face as I did put the biggest frown on I could muster and look right at her. The other nurses protested, "No we like your smile!".

I went home and contemplated my happiness, how temporary it is, whether it was being disrespectful to patients there who were facing end of life. I cried a lot that weekend, no smiling.

Ironically the lab techs who did the weigh in and blood draws would often tell me to smile on those days Iwas on AC and felt like crud. Then I felt bad for being weak and not staying positive. Bleech

Yup, there's no getting out of meeting the insane expectations of others either.

BAD Cancer Patient, BAD Cancer Patient, you smile too little, you smile too much, you are ungrateful, you are a freeloader.

Hopeful82014

Wow!

I would have demanded different techs. How DARE they tell you to smile??

For that matter, how dare anyone tell us that what we're feeling is inappropriate?

DoggieBytes

Thanks Hopeful8201. I've had some bad luck with my medical team.

Your understanding is VERY much appreciated.

My chest port became badly infected and while getting it checked at the chemo clinic I had a total break down, first. one in public too. I was shaking and crying, could barely breath. One of the lab techs called me a "cry baby" and started singing "It's my party I'll cry if I want to" right there in front ofme and the other techs. Had I been in a stronger state of mind I do believe I would have become physical with that tech because it's unbelievably unprofessional, unkind and extremely unfair.

After awhile I started referring to myself sarcastically as "Bad Cancer Patient" the way one would admonish a dog.

BUT I have had many angels too. My Nurse Navigator, the Radiology Doc who performed my biopsies, my breast surgeon who is a "rock star" in my eyes (neatest suture job I've ever seen) and kind too, 99% of the nurses, angels all of them.

Where I get frustrated is when I am treated unfairly while in a vulnerable state by people who should know better. Under normal circumstances it would be just barely a blip on my radar.Now that I'm getting to the other side of it, I feel like venting. I also hope when others read this, if they've had something similar happen, that they know they aren't alone and they didn't do anything wrong.

NineTwelve

The "Smile" thing is just typical for women, I think. On the street, at work, at home - with friends, family, strangers... The whole world thinks we need to rearrange our faces to make them feel better. "Smile" is something we get told when we're young, old, and in-between. But when was the last time you saw someone saying "smile" to a man?

The times I've felt like a bad cancer patient are when I'm caught enjoying an unhealthy treat - cake, red meat, a beer, a latte... (Don't give me that look. You know you're not perfect, either.)

edited to add: So far my health care providers are pretty understanding and non-judgmental. It's people who haven't been around cancer much who don't always think before they judge.

DoggieBytes

NineTwelve, you know what I hadn't thought of that but you are correct. Expectations for women in that regard are different.

I just finished a lovely piece of coffee cake. On the weekends I allow myself some indulgences.

Welcome to the "Bad Cancer Patient" club! ;-)

Thank you for sharing.

labelle

I'm a bad cancer patient for other reasons-mostly because when I finish this radiation crap, I am done. No hormones, no monitoring every time I turn around. I 'm calling it quits and going the healthy/holistic route and my OC (soon to be former OC) is not happy. Did not have the oopherectomy she says I need for AI therapy and won't take tamoxifen, so that's it. Doing other things like DIM, bio-dentical progesterone, optimizing vitamin D, exercise, healthy diet, etc., but that makes me a bad patient as far as the cancer drs are concerned. I just can't live in the never ending world of BC medical tests, treatments and more treatments to treat me for the side effects of the treatments.

I also found out that I am not only a bad patient, but I also have not so good insurance. This diagnosis is killing us financially,the bills are rolling in and it ain't pretty. Ugh. I've been told some day I may want some PS to fix up my lumpectomy damage, but I don't know whose piggy bank is supposed to pay for that, although right now the idea of having more surgery of any sort on my breast is not appealing in the least.

There are lots of ways to be a bad patient I guess, but you know, they work for us, not the other way around.

MsPharoah

Doggy,

My pet peeve is to be told, "smile". When they say that, I tell them, " I'm not unhappy, I am old and sick, but thank you for noticing." This always elicits some kind of awkward response and I never give them a pass. What jerks!

I am a bad cancer patient too and I didn't even know it until I read my oncologists clinical notes and found out that my medical questions were interpreted as my being over anxious about my diagnosis and prognosis. She didn't say I was a nut job, but might as well have written that.

Thanks for starting this thread.

Ms

leggo

DoggieBytes, unfortunately, there are plenty of bad doctors and nurses out there. Thank gawd they're in the minority. Having a degree in whatever doesn't necessarily mean you're good at what you do, or even have the personality to do it. Some aren't even that smart. Sorry about the bad medical care....been there, and it takes a long time to get any sort of confidence back when you've been a victim of it. Over the years, I've found that one really good doctor can make up for all the rest. What really scared me last weekend, was my son's friends talking about their university plans. One of them (you know the kind that just shows up wether their presence is wanted or not and can't get a hint) is going to medical school "because that's where the money is". Never did like that kid. Arrogant, narcissistic and greedy ever since he was five, and he might unavoidably be taking care of someone I love someday. That scares me and frankly, made me sick to think about it. 

glennie19

DoggieBytes:  How rude of that person! Like he has never seen anyone overwhelmed and stressed out before?? If a person decides to take a job in the medical profession, they need to learn to act in a proper professional way, and that was NOT it.  Your PS's attitude about recon makes me mad too, as I told you on the other thread. If you want it,,, great,,, if you don't want it,, it is YOUR decision.

The smile issue.  OMG,, it is so true that it is only told to women.  I have a naturally serious face,,, I do not walk around smiling all day, and if I had a nickel for every time someone told me to smile,,, I could pay off all your co-pays, DoggieBytes. NineTwelve is right,,, we are supposed to smile to make others feel better.  I say,, make yourself feel better,, I have enough to do to take care of myself.  And have an "unhealthy" treat, Ninetwelve!!  I got me some Haagen Daz chocolate peanut butter ice cream in the freezer. 

leggo:  that attitude about getting a job where the money is,,,, OMG,,, I see that in my profession too. I'm a pharmacist and I see these young ones who care nothing about the patient,, it's all about making money. They really have no interest in helping the patient with their medical care and their RX's. They just want to pay off their student loans and get a BMW.  Sad.

ChemicalWorld

I was a bad patient because I pretty much put my headphones on or stuck my nose directly into my laptop shortly after getting in the chair, rarely in the mood to socialize. Socializing in the chemo unit usually meant listening to people talk about their ailments or compare diagnosis. I was friendly and occasionally chatted (more so out in the waiting room) but that's about it. I was also regularly the youngest person in the unit by far, so there was that. They probably thought I was stuck up, lol.

Beachbum1023

Good morning all, We all have our stories, sadly they are too true. When I went for my first AC chemo I took a silly gaudy blinged out tiara to wear during my 6 hour infusion. I told all of my nurses it had secret super powers, and they cracked up. When I went for the second AC, all 5 of my chemo nurses greeted me in the waiting room wearing glitzy tiaras. We now refer to it as Tiara Tuesday! The nurses all need a smile, and a little escape as much as I do. We all laugh, tell stories, and share the hundreds of pictures on our iphones. They are all fantastic, and they truly care how I am. They have great ideas, and share all the SE tips they can. I am so thankful for them.

I asked my chemo nurse during the A push why I was so different from all the other patients, and she said that I fight the AC side effects, and want to make it out the other side. I get up everyday, put on make up even when I don't feel well, make sure my wig looks perfect, and dress nice. I don't give up, and I don't want to be the sick and defeated patient. But I pretty much go with I am a woman with triple negative breast cancer, not a cancer patient. To me that sounds ill and defeating, and I need all the positive I can get right now. Be it caring nurses or secret super powers. I am doing anything and everything I can to stay positive and up beat. And I will wear my tiara for my next appointment so they all smile, and tell me I can! And I can do this, with a little help from my friends. It is so nice to see all the patients laugh and smile when I "pole" dance my way to the restroom wearing my tiara. It is such a scary place to be, I need that to know today sucks and the SE are on the way, but I have today, and tomorrow!! And all the days to come.

I so appreciate all of you, sharing from the heart and wiping tears, or laughing out loud at all of the crazy things we all do to make it. I traded my car when I found out that I had triple negative BC, why, because I wanted to make all the payments and be driving that car in 72 months when I pay it off. So that's my motivation, to live as normal as possible, and keep this in perspective.

I finished all 4 AC, and all 4 T, but not without some permanent side effects, and some are serious. But I did it. I am now going to rads in the morning, and I hope that snuffs out the mets. And if not, I will make another run at it, I will fight this crap, and not give in or give up until I decide I am ready to call it quits. I will do chemo again, so game on!

glennie19

You go Beachbum!!   You are awesome!!!  Love the tiara Tuesday!!

Hopeful82014

"Where I get frustrated is when I am treated unfairly while in a vulnerable state by people who should know better. Under normal circumstances it would be just barely a blip on my radar.Now that I'm getting to the other side of it, I feel like venting. I also hope when others read this, if they've had something similar happen, that they know they aren't alone and they didn't do anything wrong."

DoggieBytes - that is it exactly, and I so appreciate that you wrote that. Early on in all of this I thought it was me. I don't anymore - I think there are a lot of people working in the medical field who should, by personality, be assembling semi-conductors. It was traumatic, however, dealing with them at one of the very lowest, most vulnerable points in my life and I actually kind of hate what some of those people did to me. And yes, it was folks in the medical field, NOT people who hadn't had exposure to the issues.

"There are lots of ways to be a bad patient I guess, but you know, they work for us, not the other way around." - Labelle, that's become my mantra. And I don't hesitate to walk away from a provider who demonstrates that they believe otherwise. I think a lot of these doctors are trading on the fact that patients think this is all super time sensitive and that they can't start over with someone new. I can, will and have and each time it's been to my great benefit.

Ms. Pharaoh, I had one surgeon who had that same sort of mind set. I just hope that someday she gets to experience something like that herself. (I know. Bad karma and all that.)

Glennie - Just wanted to say that through all of this one of the most helpful and compassionate people I've dealt with has been the pharmacist at the Target pharmacy I've used for a long time. She's the kind of person who creates a great team and gives your profession a real personality and great name. I hope it helps you a bit to know that there are colleagues out there that you'd be happy to claim as colleagues.

glennie19

Thank you Hopeful,, I am very glad you have such a great pharmacist. There are some out there. My BFF is one of them,,, but sadly she couldn't take the pressure at her big chain, and retired early.  All they care about is numbers, more and more RX's,, and she finally had enough. 

Proud to belong to this bunch of BAD patients!!

Spookiesmom

They don't know you're a badass anyway!!!! TeeHeee

DoggieBytes

labelle - It's your life and your choice.  There are times lately where I consider the road you are taking.  Docs don't get it because they are on the other side of the stethoscope.  I told my sister last night "I'm sick of being a cancer patient".  This is for many reasons, one of which is what you mention, how it takes over your life.  I'm supposed to be on anti-hormone treatment when done with rads too, 10 years.  My BS told me "We will be monitoring you closely for several years".  I'm about fed up with all of it, the money, the SEs, the lack of compassion, the costs and when I can't afford the costs I'm the 'Bad Cancer Patient' who wants my care for 'free'.  So I hear you, I understand where you are coming from and I wish you all the best and positive outcomes on the road you have chosen.  I may not be that far behind you.....

MsPharoah - I'm going to borrow your wit and wisdom!  Great come back.  :-D  Also it's odd that if someone chooses to be in the medical profession of oncology that they don't get that "over anxious" would be a normal human response.  I've been stunned, startled at how some of the medical folks don't seem to be able to make this very small step into what I would call "logical empathy" or as the kids now-a-days say "Duh".  Of course a cancer patient is going to be worried, it's natural!

leggo - True.  I've bumped into 'mean' doctors and the occasional nurse over the years.  I have been blessed to have great health all my life until the "C" bomb went off in my life.  So I had little exposure to the medical community.  I've been really surprised at how many times I've bumped into unkind Doctors.  While in the minority it's more prevalent then I would have guessed.  I'm starting to wonder if the Rad Docs get their patience and compassion microwaved out of them. I've had two now that have what I would consider anger management issues. 

glennie - Wow, you have to deal with Docs all the time! (I feel for ya!  LOL!)  I could never do what Docs do, it's a huge amount responsibility and they have to deal cranky patients too.  Having said that anyone who goes into the medical field, especially Docs need to understand that ultimately practicing medicine is a humanitarian job.  IF they choose to go into the field primarily motivated by money then they will become angry and bitter because humanitarian missions and pure money motives will create conflict. 

Chemical World - Some days I was that way too, especially with the AC.  I wanted to be quiet, meditate, try to stay calm.  I just couldn't muster up any extra energy to socialize.  Also I did worry about bothering other patients who may want to be left alone too. 

Beachbum - You Go!   Love the tiara idea!  I admire your energy and passion for life.  Your story is inspirational.  I couldn't muster up the energy while getting AC and the A push, I had to either chat with the nurse, about anything or meditate so as not to break down in tears.  I started calling the Adriamycin 'flower juice' instead of the red devil.  It's made of a vinca plant, don't know if it's a flowering type or not but calling it flower juice helped me and cracked up the nurse.  I agree with you about the nurses too (except for one rotten apple nurse) the rest seemed to appreciate it when I was upbeat, joking and laughing.  I also made up funny names for my IV pump, "O.K. Timmy, time to go to the restroom".  Humor helps.  May you dance and laugh and bring joy for many, many more years to come!

Hopeful82014 - I'm glad that my sharing this has helped you feel like it's not just you.  While I do think (as mentioned earlier) it's in the minority, especially with nurses, it's more common then we sometimes know, because we often don't share our experiences.  Now we can share these experiences more openly, thanks to internet and sites like this.  I'll expand a little on what my Rad Doc said that was a real eye opener for me later. Lets just say she showed me a bit more of her soul then she probably intended to and it wasn't pretty.

And Ditto what you said about pharmacists, I appreciate my pharmacist and with all the SE for SE drugs I've been on we've gotten to know each other! 

We may be "Bad Cancer Patients" but we're also (thanks Spookiesmom!) "Bad Ass Cancer Patients" Rock On Ladies!

 

DoggieBytes

Ohhhh Spookiesmom, I think I'm going to make a T-shirt that says "Bad Ass Cancer Patient" 

Which reminds me, I'm into the dogs and have been around police dogs, which inspired me to get this shirt. I did wear to the chemo clinic.  I told the Nurses sometimes we need to have little more attitude, enough of the save the 'ta ta' stuff!  A couple of nurses thought it was scary, cancer is much more scary I told them.  Any one interested in this shirt PM me and I'll send you the link where to buy it.

 

 

 

Spookiesmom

I had a t shirt printed says

The fear of reoccurance never goes away.

Find the cure.

Going to have another done saying:

Cancer should get Cancer and DIE

Beachbum1023

Spookiesmon, I want the shirt! I love the message, and it should die! If we could make that happen...........

Spookiesmom

Yeah, if only.

Actually, I saw the shirt in a catalogue. The Lighter Side Co. But think I can get it less $$ locally. Place called Big Frog in Clearwater has done several shirts for me.

Both on line.

DoggieBytes

Love it!

Cancer should get Cancer and Die.

Hubs had some business shirts made through an online vendor, Vista Print I think. You can do just one or two shirts and it's not too pricey. I think it's the same for CafePress.

MsPharoah

DoggieBites,

The thing I like most about these boards is that the members "get it". I am sure that my oncologist took care of many breast cancer patients who had a worse prognosis than me....maybe that was the problem....my cancer just wasn't scary enough to her! It scares the f%k out of me!.. I really like doctors and rarely find one who is blatantly rude or insensitive. What I have found lately is either incompetence (I run and complain) or condescension. The way I handle condescending doctors, is to call them by their baby name....Robert is Bobby...Lawrence is Larry or Lar, William is Billy. You would be surprised how that turns them around especially when you say..."Bobby, I didn't just fall off a turnip truck!"

MsP

MelissaDallas

You know, I never will forget going to a gyn onc appointment in the middle of my diagnostics after my bad core biopsy. I was waiting on my genetics tests to come back, I was just starting to feel better after having been so very, very ill with ovarian cancer & the surgery for that less than six months before. Both my dad's mom & sister had colon cancer. All my docs were in the same facility so knew about the other stuff going on. When the resident asked me how I was feeling I told her I was not sleeping and HUGELY anxious, she told me that "well, you know, the medicines for that tend to be kind of addicting." Damn, if you aren't allowed to be scared to death and anxious when you are going through a second cancer diagnosis in less than a year, when the hell are you allowed to be anxious and qualify for any help for it???

Hopeful82014

Melissa, it's that kind of attitude from MDs that gives them a bad name. I'm so sorry you and your family had to deal with such an awful time and that on top of it.

Sometimes I think MDs just learn scripts that they pull out of their heads without thinking. Our job as patients (when we're up to it) is to shake them up out of that mental auto pilot they fall into.

glennie19

MsP:  I love that!!  Calling them by first name or nickname!!  I am going to remember that.

Melissa:  I wish the doctors were get in thru their heads. Addiction is not a problem for most people.  Yes you might get physically dependent on a medication,,,,, and have some physical withdrawal symptoms if you stop taking it abruptly,,, but that is true for MANY meds, not just pain meds and tranquilizers.  Next time a doctor tells you that, tell them that Beta-blockers are addictive too, right,, cuz you can't stop them abruptly.  (used for hypertension and irregular heart rate).  I want to see jaws drop.   There is a big difference between true addiction and physical dependence,,, but SO MANY do not get that. I see it with pharmacists as well. I try to spread that education when I can, as I have worked in pain management a lot.    **climbing off my soapbox now** As you can tell, it's a subject that I get really irritated about.  Why worry about taking a few Xanax, etc when you are going thru stressful situation?  There are many other issues going on.

tangandchris

My first PS was such a jerk and I was soooo overwhelmed and scared I didn't stand up for myself. Like others have said, prior to BC I had limited experience dealing with md's so I didn't know what to expect. When I first started experiencing problems with my TE's he made me feel like I was overreacting and when it finally came down to my TE literally coming thru my incision he still seemed pissed at me about it.

When he put me on antibiotics he told me I'd have to stop taking my Celexa for a couple of weeks. I told him I couldn't do that, just stopping an anti-depressant is never a good idea and I certainly wasn't going to try and do that during a cancer crisis. He asked me "what's going to happen if you stop taking it"? As if I was some sort of nut or something.

I dumped him after he removed my TE's and as far as I know my BS has never used him with her patients again. I have a lot of anger toward that ass.grrrrrrrrrrrr

Hopeful82014

Tangandcris - I don't blame you for that anger; it's probably a pretty healthy response. At least you apparently got him off youer BS's roster for referrals. You can probably count that as your good deed for the year.

Glennie - those are some good points. Keep stepping up on that soap box; we need to be reminded from time to time.

MsPharoah

Tangandchris, I am so sorry you had to put up with that jerk. If I am having complications from a treatment, I expect my doctor to be sympathetic and while I wouldn't blame them for the complication, I would at least expect a "I am so sorry that you are having such a tough/painful time." Let's just rename that a$$hole........Timmy.

I went to see my PCP once for a medication check up. I wanted to make sure my cholesterol and HP medication were still right. My previous PCP had changed my medication and I was feeling well...just wanted an annual check before renewing them. So this PCP in the same practice tells me that one of my medications was 2X the strength it should be and the other was 1/2 strength. When I gasped and exclaimed....how can that possibly be?, he said. "No problem, if you want, we can leave your medication as it is." WHAT??? So I get to pick my medication?? He also poked my sternum through my clothes and asked "Has it spread?" when I told him I had just finished breast cancer treatment. Whoa, I never left a Dr office faster. His name was Victor, but I call him Vic.

MsP

Hopeful82014

MsP, I think in my own mind I would have called him something else that rhymed with Vic....

I hope you reported that to your own PCP. That jerk needs some serious re-training.

MsPharoah

Yes absolutely. That was the first time I ever felt compelled to fill out a patient satisfaction survey. I found out a few months later that he was no longer on staff at my Dr. office, but that doesn't mean he didn't migrate elsewhere

MsP