I don't know what to do

scuttlebug11
scuttlebug11 Member Posts: 175
in Lymphoma (Hodgkin and Non-Hodgkin) #1
I don't know what to do. my onc office is not calling me back, the first time i called,no one called me back and now i don't remember why i called. the second time i called was because i talked to an onc nurse from the lymphoma foundation, and she suggested i call back his office and get in sooner than nov. 7 because i am in stage 4 and i've had a relaspe, she also said that mine is not behaving like a indolent lynphoma, after i told her the dates of my relaspes. i don't know what to do his nurse says she checks her messages every day and she would return your call, is it her is it the onc do i have an onc? is there nothing else he can do, i don't know what to do or where to turn i'm trying not to dwell on it but i am really scared. blessings denise

Comments

  • violinist1
    violinist1 Member Posts: 33
    #2
    Thinking of you and hope you
    Thinking of you and hope you get an answer.Surely they will call tomorow. If you didn't say it was an emergency, they wouldn't call back over Labor Day. Can you have someone else try to help you get the docon the phone tommorow? I hope you get someone in charge of your care to talk with you right away.
  • allmost60
    allmost60 Member Posts: 3,178 Member
    #3
    Holiday..
    Hi Denise,
    You didn't say when you called...(?) This being Labor day weekend, most clinics have been closed since Friday. My clinic closed at noon last Friday and won't open until tomorrow morning. Have you considered going to the clinic and asking to talk with your doctor or the nurse? They prefer you come on appointment days, but as frustrated as you are feeling, you might be able to get worked into your doctors schedule by just showing up. Just a thought. If you don't get a response by tomorrow maybe you should go to the ER and tell them your situation. Let us know what you do, or find out. So sorry you are not getting your fears attended to. Much love...Sue (FNHL-2-3A-6/10)
  • scuttlebug11
    scuttlebug11 Member Posts: 175
    #4
    allmost60 said:

    Holiday..
    Hi Denise,
    You didn't say when you called...(?) This being Labor day weekend, most clinics have been closed since Friday. My clinic closed at noon last Friday and won't open until tomorrow morning. Have you considered going to the clinic and asking to talk with your doctor or the nurse? They prefer you come on appointment days, but as frustrated as you are feeling, you might be able to get worked into your doctors schedule by just showing up. Just a thought. If you don't get a response by tomorrow maybe you should go to the ER and tell them your situation. Let us know what you do, or find out. So sorry you are not getting your fears attended to. Much love...Sue (FNHL-2-3A-6/10)

    a week ago
    i called a week ago, i am afraid if i go in i may make someone mad and there the no. one cancer center in my area, i can't afford to go out of my area, and if i could i have no help with my daughter. what would i tell them at the emergency room. it feels so hopeless blessings denise
  • jimwins
    jimwins Member Posts: 2,107
    #5
    scuttlebug11 said:

    a week ago
    i called a week ago, i am afraid if i go in i may make someone mad and there the no. one cancer center in my area, i can't afford to go out of my area, and if i could i have no help with my daughter. what would i tell them at the emergency room. it feels so hopeless blessings denise

    Don't let the dog walk you... :)
    Hi Denise,

    Ever walked a dog and realized it was walking you?
    Well, to me fear is kind of like that.

    Believe me, I've been very afraid through all of this and
    have let fear put me on a leash and take me for a walk quite a few times.

    It's okay to be scared but sometimes it gets out of control and
    we have to put it on a leash - not the other way around.

    Try to focus on or do something else to help calm you - whatever
    works for you (a funny TV show, a walk, a relaxing bath, etc.).
    Maybe take some slow deep breaths and exhale slowly - they say that
    helps relax you.

    Shortly after I got my diagnosis and before I saw my oncologist for
    the first time, my regular doctor prescribed something for anxiety (Ativan)
    and it has helped. I only take it at night before I go to bed but I don't
    have the feelings of panic I was having at the beginning of this.
    If you aren't taking someting already for anxiety, maybe you can discuss
    this with your doctor also.

    I hope you can see or talk to your doctor tomorrow.
    Please let us know how it's going. Remember, you're not alone here
    and we do care about you.

    Hugs,

    Jim
  • scuttlebug11
    scuttlebug11 Member Posts: 175
    #6
    jimwins said:

    Don't let the dog walk you... :)
    Hi Denise,

    Ever walked a dog and realized it was walking you?
    Well, to me fear is kind of like that.

    Believe me, I've been very afraid through all of this and
    have let fear put me on a leash and take me for a walk quite a few times.

    It's okay to be scared but sometimes it gets out of control and
    we have to put it on a leash - not the other way around.

    Try to focus on or do something else to help calm you - whatever
    works for you (a funny TV show, a walk, a relaxing bath, etc.).
    Maybe take some slow deep breaths and exhale slowly - they say that
    helps relax you.

    Shortly after I got my diagnosis and before I saw my oncologist for
    the first time, my regular doctor prescribed something for anxiety (Ativan)
    and it has helped. I only take it at night before I go to bed but I don't
    have the feelings of panic I was having at the beginning of this.
    If you aren't taking someting already for anxiety, maybe you can discuss
    this with your doctor also.

    I hope you can see or talk to your doctor tomorrow.
    Please let us know how it's going. Remember, you're not alone here
    and we do care about you.

    Hugs,

    Jim

    called back
    i called back today and left a message what the onc nurse had said to me about mine not behaving like an indolent lymphoma, and that i was really confused as to why no one was calling me back i ask if nothing else could be done i also said i did't know if i had an onc and if not i needed one, that i am really confused. i hardly ever bother my doctor, whenever i seen him last, and i told him that i was unable to have the mri that his nurse had ordered he acted like he did'nt know what i was talking about. i feel like this is going to drive me over the edge i can't deal with not knowing whats going on. blessings denise. am i over reacting
  • CountryGal7557
    CountryGal7557 Member Posts: 164 Member
    #7
    scuttlebug11 said:

    called back
    i called back today and left a message what the onc nurse had said to me about mine not behaving like an indolent lymphoma, and that i was really confused as to why no one was calling me back i ask if nothing else could be done i also said i did't know if i had an onc and if not i needed one, that i am really confused. i hardly ever bother my doctor, whenever i seen him last, and i told him that i was unable to have the mri that his nurse had ordered he acted like he did'nt know what i was talking about. i feel like this is going to drive me over the edge i can't deal with not knowing whats going on. blessings denise. am i over reacting

    You did the right thing!
    You did the right thing! You are your own best advocate, not the doctor. so ask as many questions as you like, call them as many times as you need until you get your answers and you are happy with their answers! hang in there! you are not over reacting! Hugs janelle
  • JoanieP
    JoanieP Member Posts: 573
    #8
    Denise
    Hi Denise.
    I am so sorry you are feeling anxious. Keep calling and get an appointment. Write down everything you need to ask the Onc. If you feel like you are not getting good care, go to another Dr. You have to have confidence in your Dr. and that he is there for you. Hugs to you . I hope you get results soon. When I am anxious I pray, listen to music and watch funny T.V shows. Not at the same time:) Joanie

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