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I was sheltered in oncology...

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

but now I'm back in the general population, and I can't say I'm too happy about it.

My oncologist wasn't the greatest, but man.  Now that I'm trying to find a GP to work with, I'm realizing that maybe I had it pretty good.

I've seen two family practice docs in the last two months.

First guy:

-no eye contact

-interrupted me a bunch

-said "I see you've had a surgery" (CLOSE!  Only off by 4, dude.  Let me congratulate you on your attention to detail.)

-made me sign off on an opiate therapy plan, which includes having to do a urine test once a year to make sure I'm not selling my meds

(this both made me cry, and reminded me I really needed to go home and watch Breaking Bad)

-reduced my vicodin rx by 25% without telling me

(nurse wondered how I knew when I called to ask about it...hey, don't try to slip me the bad stuff, yo.  Us drug addicts can always tell.)

 

SOO, that one wasn't a keeper.  And I went to see him in the first place because he's my husband's doc and Bob recommended him.  I'm sure he's great when you're a super healthy guy whose biggest issue is a bum knee from all of his sports.  Thanks honey! Sealed*

 

*is that smiley gritting his teeth?  'Cause that's kind of how I'm feeling right now.  Anyhoo...

 

Bachelor #2:

-started convo by saying "Let me tell you what I know about your case".  Shouldn't those pronouns be reversed?

-repeated my words to me (when I was explaining my level of pain), using a high, kind of trembling voice...I mean, WTF?  

        Would he have lowered his voice and made it all gravely and whatnot if he was talking to a man?  

         Somehow, I doubt it.  Plus.  I'm an alto.  So crappy impersonation all around.

-had managed to learn the deep dark secret of my life, that I have "cancer", but somehow didn't wonder what kind.

....he literally did not. know. what. type.  As a doctor, seeing a patient for the first time, wouldn't you just be, oh i don't know...CURIOUS.

 

I think I'm about done with the medical field, folks.  After the first visit, I decided to taper off the pain killers, and am now down by about 60%.  Another couple of weeks, and I'll be done.  The joint pain and neuropathy is nuts, but being treated like a drug addict was also too much for me (I mean, I am an addict, I guess, in the sense of having a physical dependency, but...hopefully y'all know what I mean...I'm not selling my body on the streets or anything**).

**Hahaha...I wonder if there is a market for plump, middle-aged ladies with giant abdominal scars?  Actually I don't want to know.

I will go see a specialist for chronic pain which doc #2 recommended, but I'm not willing to do much more in the way of actual medications.  I'm in if it involves gin, otherwise, no thanks.

It was really such an upsetting experience.  I'm doing my best to make light of it, but I actually cried right in front of the guy at that second visit, which was infuriating.

Idk, maybe I'm being a wuss about all of this.  I'm alive, more or less in one piece (minus several feet of intestines, and one uterus, but who needs those anyway).  I shouldn't complain.  But thanks for listening while I do.

Lots o' love~AA

PS if anyone has any neuropathy tips, I'm all ears...can't sleep because, by the end of the day, my feet feel like I've stuck them in a bucket full of biting ants (which I know for a fact because I once ran through an ant hill as a kid)

 

Trubrit's picture
Trubrit
Posts: 5486
Joined: Jan 2013

I continue to count my blessings that I have a good team, and feel sorry that you have to find yourself a suitable GP. 

At least now you know what you expect of a Doctor. 

With your neuropathy and joint pain, I have both of those too. I have noticed that extra salt makes my neuropathy get worse. I've been taking Colace since my surgery, and sure enough, my neuropathy has been bad.

With the joint pain, these past few weeks I have eaten very little, I have eaten almost no bread and guess what? My joint pain has practically disappeared. I think that eating less bread has made that difference. 

So, when you get some time, cut out or down on some foods and see if you experience any kind of improvement. Bread, sugar and salt are a good place to start. 

Good luck.

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

but I know you're right.  I need to cut gluten way back/out and see if it helps.  I did do testing for food allergies a while back, and I tested allergic to wheat.  The naturopath I was seeing said that chemo can really exacerbate these allergies too, by damaging the lining of the gut, and allowing tiny particles of food to escape into the rest of the body.

I suspect that our treatments affect us in the ways that most doctors are completely unaware of...

Btw, on a more important topic, how are you doing?

Trubrit's picture
Trubrit
Posts: 5486
Joined: Jan 2013

Btw, on a more important topic, how are you doing?

Not on this thread, my dear friend. This thread is ALL ABOUT YOU. 

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

Go update your thread!  Inquiring minds want to know. Laughing

danker
Posts: 1282
Joined: Apr 2012

Perhaps,rather than a G.P. you should look into seeing an Internist!  Give it a try.  My primary is an Internist.  And of course I also have an Oncologist,Surgeon, and Radiologist.  Good Luck!!!

Lovekitties's picture
Lovekitties
Posts: 3372
Joined: Jan 2010

Keep on looking...there must be a prince out there amongst all the frogs!

You need to have a GP, if not for your pain management  just for the regular checkups you need.

Perhaps you could ask your onc.'s nurse or someone in his office for a recommendation...based on what your requirements are...like a good listener, pays attention to the patient, whats to know your history, and oh yea...will treat you like a survivor.

Also you might check out any local cancer support groups and see if any of their members have a recommendaiton.

Hang in there.

Hugs,

Marie who loves kitties

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

it's funny, because guy #2 was someone one of the nurses recommended!   Oh well.  I think I'm a difficult patient in many ways.  But I do know there are great docs out there, as I had a fantastic one for almost 20 years.  Who unfortunately retired a couple of years before I got sick.  Maybe I should try and hire him as my private doctor...after I win the lottery. Foot in Mouth

marbleotis's picture
marbleotis
Posts: 715
Joined: Mar 2012

You know the  kind of Dr you would work well with - now you just continue interviewing until you find that person.  Never settle.

You need to kiss a few frogs first.......

As for the neuropathy.  For the hands - lots of embroidery or sewing and the feet, gym 3x week use only good sneakers and shoes are only Clarks.

Hope this helps

 

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

I'm really noticing it when I stand or walk for any length of time.  So I was wondering if it made it worse.

jen2012
Posts: 1607
Joined: Aug 2012

I agree..don't give up the search.   I find women to be easier to relate to and more compassionate.  I get the drug addict thing...had the same issues trying to fill my husbands high dose of fentanyl at the 24 he pharmacy that didn't know us.  Had our 14 yr old son with us and I left so angry and humiliated at the questioning I received.  Horrible way to treat people and med people should know that cancer patients have more/different pain than the average bear.  

 

Regarding the neuropathy, have you tried gabapentin?  Or acupuncture?

 

I'm sorry you have had such a crappy experience with the doctors that are supposed to be helping you.

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

I realize that these drugs are a big problem for many people, and they are trying to avoid overdoses, but it would be nice if they could be more aware of our medical histories, and treat us with a little respect.  I think we've earned that.

And I will ask about the gabapentin when I see the pain specialist.  Acupuncture unnerves me a little, but I should give it another try.  My naturopath enjoys whacking those needles in a bit too much (it's Chinese acupuncture, the motto of which is apparently, "no pain, no gain").

Lisa2012's picture
Lisa2012
Posts: 142
Joined: Feb 2014

I don't have anything to offer here except support, so I will leave it at that.    I am sorry for your difficult time, especially for the way that the doctors made you feel.  As the others said hang in there and keep searching.

 

lisa

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

I know you have far bigger worries right now, and I'm lucky that no one here has told to put a sock in it!

ron50's picture
ron50
Posts: 1729
Joined: Nov 2001

Seems I really do have to write that book on how to train your GP and definiitely with a couple of chapters on the use of the rolled up newspaper. I've got mine about fifty percent of the way to where I want him but he does get a little absent minded at times. Like about no anti-depressants dave. well they aren't really anti-depressants ,they are what we use as sleeping pills now. What are they dave? well I guess they ARE anti-depressants sort oof. Sit in the corner dave. What are these tablets dave. They are cymbalta, they are pain killers. No dave they are anti-depressants with a track record that rates them one step below nuclear waste. Well aghh i'll sit in the corner . Thank you dave. Sadly , that is a fairly average but true visit with my gp. By the way the secret with the rolled up newspaper is what you roll it around... Ron.

Lisa2012's picture
Lisa2012
Posts: 142
Joined: Feb 2014

Let me know when your book is done

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

Rotten fish?  A large rock?  The mind boggles at all the possibilities!

You always cheer me up, Ron.  I appreciate that, esp because I know that you've been through way more crap, for way longer.

carrieh's picture
carrieh
Posts: 146
Joined: May 2012

Don't settle for a GP that doesn't listen, minimalizes your pain, or talks over you. Six months of unbearable pain..no one would listen to me...totally treated like I was "looking for drugs,"...turns out I had a tumor so big that it ended up ripping my colon apart! Hmmm. I went to so many doctors trying to figure out what was wrong, finally found one that seemed to listen...I looked him right in the eye...told him..." I NEED HELP. I CAN'T WALK IT HURTS SO MUCH. I NEED YOU TO LISTEN TO ME." I learned to interrupt when a doctor is going on and on but has it wrong. If they get upset, then SEE YA! If you get a bad feeling about a doctor and don't think he's really listening, I say listen to your gut. My radiologist spent about an hour talking about his qualifications etc... ended up almost killing me. Finding a good doctor can be really tough, but just don't give up...I love my doctor now..he lets me tell him what dosages I think I need and actually entertains the notion that I know my body best. Good luck

carrie

Trubrit's picture
Trubrit
Posts: 5486
Joined: Jan 2013

On my first visit with my Radiation Oncologsit, he spent an inordinate amount of time showing me my CT scan on his computer. After his staff had left for the day, turned off all of the lights with the exception of his office, he leaned back in his chair and asked me if I had any more questions. 

"Oh yeah, he's a keeper" was my thought. 

They are out there, and they are worth searching for. 

Annabelle41415's picture
Annabelle41415
Posts: 6715
Joined: Feb 2009

It's hard to find a doctor that you like and trust.  When dealing with multiple doctors that can be more frustrating.  I'm sorry you were so upset with the doctors.  Wishing you can find one that you like.  Get some recommendations from your friends or even maybe your pharmacist.  Proud of you on weaning down from the pills but don't get discouraged if it doesn't go as fast as you want.  I'm still dealing with neuropathy too but mine doesn't sound as bad as you.  My feet and hands hurt if the temp drops below 65.  I'm on gabapentinen (sp) and although it doesn't take the symptoms away, it is tolerable.  Wishing you the best forward and hoping you find that gem of a doctor.  They are out there, it's just a matter of finding them.

Kim

Meowycat
Posts: 66
Joined: May 2013

I just read your post and I just shook my head. There are lots of individuals in the Medical Field who either need to hang it up or brush up on their people/medical skills.

I'm sorry you had to go through that twice. There has to be a good one out there. Mom was on Gabepentin and now Lyrica for some of her Neuropathy symptoms. She says her feet feel like they are in cement and she's walking in "Herman Munsters" shoes.

You are not a wuss-you are a strong person.

Sending Huggies and Positivity your way,

Nellie

 

Helen321's picture
Helen321
Posts: 1428
Joined: May 2012

lol You are too much. 

I started to get addicted to the pain killers last year.  After I stopped taking them the withdrawal was serious.  I would have harsh phantom pain for hours.  I finally realized what it was after 4 times trying to quit and switched to tylenol. After about a week the pain became more tolerable and the tylenol worked much better but that was a week from hell.  I wanted my drugs.  Now I'm fine.  The problem with lowering dosages is you don't know what's the real pain or if you're having withdrawal symptoms which include phantom pain.

I have the best GP on the planet after having the worst.  She listens and when you have a major problem she says to hell with the next patient, they'll have to wait which makes waiting for her worth it because you know she's taking her time with someone who really needs it.  They're out there, you'll find one.

You had more and different treatment than I did but ever since I changed my diet, my pain is gone.  I eat bananas daily for cramping.  I've gotten rid of a lot of carbs (I still eat some but I choose Basmati Rice over Uncle Ben's and sweet potatoes over white potatoes) and I've added more fresh fruits and veggies (which isn't always pretty with this ostomy).  Also organic plain yogurt with grapes and strawberries is just delicious (who knew).  They had a free breakfast at my office one day and I decided to try it.  I've been buying an egg fritata every morning (it's a teeny tiny cupcake shaped egg dish) with a variety of additives like cheddar cheese and little bits of turkey with green peppers which are made fresh each day and they are the bomb.  I want to try to make them at home.  Everything now is also in smaller portions.  I've also added light exercise and am in the process of giving up junk food (sometimes I give in and eat zeppolees).

I couldn't walk without something on my feet at all times for the last year and for the first ten minutes of the day I couldn't put my feet on the floor at all.  I thought maybe it's a circulation thing since my legs are always cramping and so I added the bananas and things seem to have improved.  The other day I walked on a bare wood floor and didn't have to think about it at all.  Not sure exactly what change made things work.  The only thing I haven't been able to resolve is the hip pain.  Oh and also I have to wear gloves if it's chilly out or my hands hurt but I can tough stuff in the freezer no problem.

Without ovaries I've also had to start taking calcium and I had low vitamin D so I'm taking that as well.  I'm hoping that the hip pain improves over time now that I'm taking those. 

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

I appreciate it.  I did see a naturopath, who suggested that the joint pain might be due to "leaky gut syndrome" (basically the intestine gets fried by chemo, food particles leak out into places, like hands and feet, where they aren't supposed to be).  She recommended some dietary changes, which I tried for a bit.  I think I need to bite the bullet and do this a little more extensively.

I just love to cook, and to eat, so it may be a challenge!

Good reminder on the calcium.  My ovaries bit the dust as well during this process, but no one has mentioned any supplements to me.

Trubrit's picture
Trubrit
Posts: 5486
Joined: Jan 2013

It's rather frustrating, because, my joint pain has diminised considerable since I cut (drastically) down on sugars and bread, but, it is because I cut down on these things, or is it because my body is mending? 

I would say to myself to eat bread again, and see if the pain comes back, but I've got an appointment with my Oncologist on Monday, and I've a awful feeling that I will be back on some maintanace Chemo (NOOOOO!), so whats the point. 

But if it is the bread, and I make my own bread and LOVE it, then I must admit, its well worth the sacrifice. 

Sandi1's picture
Sandi1
Posts: 278
Joined: Aug 2008

I know what you mean, i am my husbands caregiver.  He has been constipated for a while now and has pain from it, after not getting any relief from the laxatives and suppositories that the Onc prescribed, my husband decided that he would go back to the gastroenterologist that actually found his cancer way back in the beginning. So, we go for the appointment, now mind you we hadn't been there since his diagnosis 6 years ago; we did not have to wait long to be called in, and we actually did not have to wait for them to come in - it was the doctor and the intern who is training with him who came and got us.  So, once in there - the doctor starts with saying to us - we have gone digital here so i will have to put your information in the computer and start a file for you. (excuse me, but isn't that supposed to be the secretary's job?) oh well, after what seemed like a million stupid questions, he hands my husbands "paper" file to the intern and says here read this, learn how we treated him. After to questions, he says to my husband, so why are you here today - my husband explains his problem and the doctor says oh, ok - hopefully we can take care of this.  Then says, i see here on your "paper" file that you have/had cancer? my husband says yes, still do - stage 4, you were the doctor that diagnosed it after my colonoscopy.  He started mumbling something to us and his office phone rings - he immediately picks it up.  I'm assuming it is his accountant because he is saying, i know how much things cost.... yada, yada yada.... meanwhile the intern is looking at my husbands file and asking my husband some questions about his surgery and medications - the other doctor turned around and says to us.... shhhhh i'm on the phone - be quiet! well by this time, i'm gritting my teeth - because i don't take kindly to that kind of crap.  so he gets off the phone and doesn't even apologize and continues to ask my husband stupid questions. He says to my husband, you act like i should know all this stuff already?! I almost said to him, well if you had taken a few minutes to review his file before you called us in, you would have known that you have treated him before, but I decided to not say anything because i don't think that i can be nice.  After taking all of this information down he says ok, i think you need an endoscopy, did you eat today? my husband says no - the dr. says good we will fit you in this afternoon, but i can't do it i'm busy - so my partner will do it.  Then he gets up and says to my husband i want to check your stomach, my husband says ok, but please don't press here it really hurts - so what does the doctor do? presses there with quite a bit of force - i watched my husband go pale white from pain. So we go out in the main office fo them to schedule his endoscopy and the doctor puts a "get your colonscopy" sticker on my husbands shirt and then looks at me and says here is one for you and tries to put it on my chest - i backed up and said no thanks, please don't touch me.  Anyway, so my husband has his endoscopy and everything is good. He went back for a follow up (without me) and now has to have a ultrasound on his gallbladder. but wow, i told my husband, that if i had went to see him for myself - i would have walked out as soon as he shhh'd me, maybe even before.  the other dr. that did the endoscopy was no prize either - but that's another story.  Oh and i didn't even mention how he called the front desk while we were sitting there to yell at them for not spelling our last name right and putting a space in our name and no capitals, and then says to them - fix it and hangs up. I mean, come on - that could have waited until we left and a gentle note saying could you please fix their last name. I don't care if he is the best gastroenterologist in the area, when you are with a patient, you are with a patient!  Stupid doctors....

LindaK.
Posts: 506
Joined: Apr 2013

We have had some similar experiences with my husband's doctors too.  We switched in March to a wonderful cancer center here associated with the largest hospital in our city.  When I think back to all those crappy appointments and being treated like they don't know him, his history, or me, I get so mad.  But, it is all water under the bridge.  It's time for your husband to change GI doctors.  I know it is a PITA to feel like you're starting over, but it's his life you're talking about.  Since we now see 3 or 4 professionals before each chemo treatment, every and all questions are answered that day.  There are no broken promises that they will get back to us.  They recommend people in their hospital for all things now like GI, GP, etc. which we have gladly followed their suggestions.  My husband's GI doctor told him in December after his first colonoscopy 1 year after diagnosis "You need to lose weight" all while a large aggressive tumor was growing in his small intestines.  CT scan missed it in early December and no one seemed too concerned he was having so much pain from all they said was constipation.  A NP at the GI office was the only one who seemed to care, getting in touch with him daily and trying different drugs.  Finally an xray in January showed a blockage and she was the one who sent him to the hospital.  No one informed the GI practice of coming to visit him during the hellish 17days he spent there.  When I saw the NP in the hospital hallway, she said she couldn't view my husband's chart because the hospital had not called the practice for a consult.  It was just one mismanaged item of about 100 there.  It took them 8 more days to finally decide to do surgery to remove this monster tumor.  Same thing happened to him when asking them not to press on the left side of his belly - they would all go there like it was a magnet.  What is with those people??

This GI doctor you speak of surely takes the cake.  He was really sushing you?  You all should have walked out.  He's proabbly having money problems, that's why he's taking his own calls.  The way he treats his patients and staff are a good indicator to RUN away from that office.

The problem is when you are in pain and need help, you feel like you HAVE to put up with poor patient care, but you don't.  BTW, the new place we go has not had us fill out 1 stinking form.  My husband had never been there and on our first appt. they already had all his history in their systems and even showed us things on the computer screens I had asked the old place about.  It's amazing what good care is when you've been treated badly.  I feel so much better about everything now.

He's having his 4th Folfiri Wednesday, doing pretty good so far.  He seems to do better each cycle, when he thought he'd be feeling worse each time. CT scan next Monday to see how the chemo is working on his lymph node involvement.  Dr. said he's very confident it will be good news, so we are confident too.

Good luck!

Linda

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