I was sheltered in oncology...

annalexandria
annalexandria Member Posts: 2,571 Member
edited April 2014 in Colorectal Cancer #1

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)

 

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Comments

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    I wish you luck

    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.

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    Don't give up the search

    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

  • marbleotis
    marbleotis Member Posts: 720 Member
    Do not give up

    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

     

  • jen2012
    jen2012 Member Posts: 1,607 Member
    I agree..don't give up the

    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.

  • Lisa2012
    Lisa2012 Member Posts: 142
    Cyber HUG

    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

  • ron50
    ron50 Member Posts: 1,723 Member
    Seems I really do have to

    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
    Lisa2012 Member Posts: 142
    ron50 said:

    Seems I really do have to

    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.

    Thanks for the laugh

    Let me know when your book is done

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    Trubrit said:

    I wish you luck

    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.

    Bread is the at the base of the food pyramid, for me...

    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?

  • annalexandria
    annalexandria Member Posts: 2,571 Member

    Don't give up the search

    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

    Thanks, Marie...

    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

  • annalexandria
    annalexandria Member Posts: 2,571 Member

    Do not give up

    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

     

    So does exercise help neuropathy?

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

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    jen2012 said:

    I agree..don't give up the

    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.

    Yep, 'humiliation" is the right word for it.

    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").

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    ron50 said:

    Seems I really do have to

    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.

    What do you roll it around?

    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.

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    Lisa2012 said:

    Cyber HUG

    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

    Hugs back to you Lisa.

    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!

  • carrieh
    carrieh Member Posts: 146 Member
    Don't settle for a GP that

    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
    Trubrit Member Posts: 5,796 Member

    Bread is the at the base of the food pyramid, for me...

    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?

    I don't think so

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

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

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    carrieh said:

    Don't settle for a GP that

    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

    The best

    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. 

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    Trubrit said:

    I don't think so

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

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

    Fine, woman.

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

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    Doctors

    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
    Meowycat Member Posts: 66
    Huggies

    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

     

  • danker
    danker Member Posts: 1,276 Member

    Fine, woman.

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

    New Doctor

    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!!!