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Away from forum since Oncologist crushed my hopes and spirit

KarenMG's picture
KarenMG
Posts: 109
Joined: Jun 2017

I posted about this a while back, it's taken me since March 19 when I visited him last to be able to function, I was a zombie 2 days. Felt totally like giving up. People I talk to say it seems like I've given up. It hit me so hard the way he spoke to me, his demeanor and everything that day. My scan looked worse and he gave me little hope.

So I finally have been able to do things around the house and get out a little bit. Went out for a birthday dinner and to get a hair cut. I am still not back to where I was at all. I did go see the NP and the nurse 2 weeks later and when I told them how upset the Dr made me they were just very defensive of him and put it all on me. I decided that I am done with that cancer center! I have an appt with a new Doctor, a female that is younger at a different cancer center in town and have read some good reviews about her. I am at least hopeful about that.

My appt with her is not until May 1st. I also plan if I am up to it to go to Medical University of SC and see if they have anything more to offer. I am not taking the Stivarga and feel like I am playing Russian roulette with my life but I want to see the new doc first. It would really be easy for me to give up right now.

Oh and my therapist told me that I was acting more like I am dead than alive. Nice. It may be true I don't know but not sure that she should have said that to me. Also she inappropriately (I think) suggested that I go with Hospice. That also shook me up. I do like her a lot but I'm not sure what her approach is. ???

Oh well, holidays get me down the last few years, I used to all kinds of things but now my family is so distanced from each other that I end up doing nothing. Sad, sad. Nope, don't care for the holidays anymore. I just told my son that when no one is talking to me for a day or two, unless they need something or I am paying them to talk to me or spend time with me, that I really feel like I have no reason to be here anymore. That is really sad!

But I perservere!

Karen

 

Butt's picture
Butt
Posts: 325
Joined: May 2018

Karen, I thought about you today. I am glad you have a new doc on file in case you may need some pain meds and etc. Nurses in a cancer center may be strange. I accudenky discovered that they keep notes on what the patient said. My next note was she is very quite and gives brief answers. It is like I am under some direct  observation. So, I don t know talk with them. They go thru motions. They have hard time and please don t take it as the offense to deal with people who have issues so to speak. It makes their life harder. They prefer the smooth journey with a sweet gramma. I think. We are with you, dear! 

KarenMG's picture
KarenMG
Posts: 109
Joined: Jun 2017

You're my rock...one of many on here! I do feel good about this new doc. As a nurse that worked many years in hospitals and offices, I had to do volumes of charting about the patients. Every little detail of what they said and did, attitude and such. When I went to that NP I was just stating facts, not crying or raising my voice or anything like that. I wish I had recordings of their facial expressions and attitudes! If I did that to a patient as a nurse, I would have been reprimanded. Knowing that they know how they are supposed to act and the fact that I know that I think makes it a hardship on me. I do plan to write a letter to all involved when and if hopefully I can totally switch to this other doc and cancer center. Ironically I worked at the very cancer center that I will be going to. That is going to be some weird flashbacks for sure. I liked it there.

So yes, I know how nurses operate. I truly do not give a f**K if they don't like me!! I'm fighting for my life here and they are being a**holes. Moving on...wish me luck with the new doc and MUSC. I know MUSC should have something to offer. It may be chemo and I may not like it but I guess it's what I have to do.

Take care Butt and thanks for caring and thinking about me.

Karen

Annabelle41415's picture
Annabelle41415
Posts: 6247
Joined: Feb 2009

It's great that you are going for another opinion.  It sounds like the doctor you are talking to you has given up on you and you need someone that is fighting in your corner.  Also, your therapist sounds like they need some retraining on how to deal with patients that are walking a fine line.  Doesn't sound like you should be going to a doctor that is telling you that you act like you aren't living your life.  Shoot let them have a cancer diagnosis and see how they react.  It might be a good idea to try, again, for another one.  Hoping for a good Easter, whatever you can make of it.

Kim

KarenMG's picture
KarenMG
Posts: 109
Joined: Jun 2017

Once again, thanks for your kindness and understanding. Yes, I've gotten the feeling from that doc before and didn't like it. The therapist is the one that said I acted more like I was dead than alive. ?? I am going to ask her what her intentions were with saying that. It doesn't seem nice or therapeutic.

My Easter is very quiet. My family doesn't seem to want to do anything. My grandkids are scattered everywhere. I just tried to make plans with the 17 year old but I was too late by the time I felt like a human. I'm having so much trouble with my blood pressure for some reason. I'm guessing it's my super high anxiety. I had to take 3 mg of Ativan last night to get to sleep and still woke up every 3 hours. Now I'm on 3 beta blockers...my bp was 200/91 at the doctor's office, he said I was about to have a stroke if I don't get it down!

I sure wish I could relax somehow. Between the cancer worries, pain and family making me crazy, it just stays fairly high. However the beta blockers knock me out during the day at the wrong time! It's all wacky.

Hope you had a lovely Easter Kim. Take care!

Love, Karen

Annabelle41415's picture
Annabelle41415
Posts: 6247
Joined: Feb 2009

I'm glad that you see that you need to get another opinion and someone that is going to be on your side.  As far as the blood pressure there is no reason to have you leave the office if your BP is that high.  They need to get that regulated and not just let you walk out without figuring out what is going on.  Are you on BP medication?  If so, they need to find something else to bring it down.

I'm sorry that you had no family around for Easter.  That has to be difficult to have grandchild scattered and children going their own way and not paying much attention to your needs as well.

I'm praying that you get a doctor that can help you all the way around.

Hugs!  Kim

NewHere's picture
NewHere
Posts: 1117
Joined: Feb 2015

Totally unacceptable that you have to deal with this.  I have been fortunate with my doctors, nurses and others at MSK.  Except for one person.  And one call.  I left my oncologist at that point.  I was so angry and was about to cry with how much of a raging as--hole she was on a call.  Dismissive and making s--t up.  Everyone has bad days, but if you are dealing with patients with this type of situation, not just a chest cold or flu, you need to check the bad days at the door.  Or if you are that burnt out, find another profession.  

As to your therapist, that sounds real strange to say.  Maybe a phrasing issue on their part.  And the whole hospice thing sounds kind of weird also.  There can be an emotional element at some point, but the way you are describing things, does not sound like you at point of hospice.

 Of course it is totally undestandable to get down from it, but try not let these people get you down too much when they act or say things that are inppropriate. 

And remember there are a bunch of us here who are always here for you to help discuss things, celebrate the good things and work through the less than good things.

I will be smiling when you go to Hawaii and come back with the great photos :)

KarenMG's picture
KarenMG
Posts: 109
Joined: Jun 2017

Sorry you had to deal with such an ******* yourself. So many docs don't seem to know how to deal with patients and their emotional upheavals. After years of doctoring you would think they might learn, Idk.

I'm glad you are liking MSK. I have thought of that place but Medical University is a huge facility with a big cancer center. I am going to check there first. I did some clinicals with nursing school there so it will feel more familiar. Charleston is a beautiful place and I can try to find a nice beach house to rent...on the beach! Pricey but maybe it will turn out to be a nice vacation too.

I'm a little bit intimidated about going to Hawaii, it's a 10 hour flight and I haven't flown in 30 plus years! I would love to go I think but don't think I would feel like doing much so not sure what it would be worth to me. Any thoughts on that?

Karen

danker
Posts: 1191
Joined: Apr 2012

When I realized that the Oncologist the hospital assigned to me was a real Jerk, I fired him!! Asked my surgeon to reccomend someone else.  She put me with a caring competent lady

Oncologist that I just loved.   Best of luck to you!!!

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