Scared

forme
forme Member Posts: 1,161 Member
in Lymphoma (Hodgkin and Non-Hodgkin) #1
Hello Dearhearts

I am scared of tomorrow. I must sound so silly, but I really could use your advice.

I have had many many transfusions in the past, but with a different doc taking care of me and setting it all up. Every time I have received a unit of blood, I would receive as a pre med, tylrnol and i.v. benadryl. Then after each unit i would receive i.v. lasix to lessen the chance of fluid overload and all the bad effects that can cause.

Tomorrow I am receiving at least two and possibly three units. The onc who dismissed me yesterday is the one who set it up. It also could have been the partner onc who set it up, I have no idea. I mentioned yesterday about the pre and post meds and how I always receive them. She seemed surprised and didn't give me any sense of security that I will be receiving these meds. I am really really scared of tomorrow morning. What if I get there and they tell me that nothing is ordered except the blood, I don't know if I could continue. I have a history of bad reactions to many meds, including anaphalaxis. The risk seems so high to me. I don't know what to do.

I did talk to my neighbor who is a doc and he said that if I was his patient he would make sure I had the pre and post meds. Especially the lasix since I already have to much fluid on board from the swelling.

I have a call in to my pcp to ask him what to do, but since he does not have admitting rights at the hosp there is little he can do. Which is why the onc is in charge.

I am just so scared, I know that I need the blood to kick start my marrow, but what if there are no meds ordered. I don't know what to do.

What would you do? What should I do? I could continue to wait it out and try to find someone else to be in charge. But the physical symptoms are many and I am just so tired.

Any thoughts or suggestions would be great.

Lisha

Comments

  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #2
    The neighbor doc.
    Lisha,
    The neighbor Doc sounds like your best way to go from here as far as the pre-meds go. He said he would make sure you got them. You know from past experiences that you need them. You also know the transfusion is needed to get things kick started,so the neighboring Dr. is the only real backup you have at the moment.Its obvious your Onc. is an a$$hole. Didn't mean to cuss,but thats the way I spell Onc. Its a real shame they put everyone thru this crap. There are some good Drs out there,but most are just after that dollar.Thats my opinion anyway. We have all experienced similiar situations at one time or another. Of course there will be others that totally disagree with me and say just the opposite. The issue now is you need reassurance that all will be taken care of tomorrow. John
    PS...Make sure your hubby files a complaint with the hospital,but you know they cover up for their drs. The newspaper is the better bet.
  • forme
    forme Member Posts: 1,161 Member
    #3
    COBRA666 said:

    The neighbor doc.
    Lisha,
    The neighbor Doc sounds like your best way to go from here as far as the pre-meds go. He said he would make sure you got them. You know from past experiences that you need them. You also know the transfusion is needed to get things kick started,so the neighboring Dr. is the only real backup you have at the moment.Its obvious your Onc. is an a$$hole. Didn't mean to cuss,but thats the way I spell Onc. Its a real shame they put everyone thru this crap. There are some good Drs out there,but most are just after that dollar.Thats my opinion anyway. We have all experienced similiar situations at one time or another. Of course there will be others that totally disagree with me and say just the opposite. The issue now is you need reassurance that all will be taken care of tomorrow. John
    PS...Make sure your hubby files a complaint with the hospital,but you know they cover up for their drs. The newspaper is the better bet.

    Thanks John
    Hi John

    Thanks for responding to my fears. I just talked to my pcp and he has reassured me that if there are no pre/post meds ordered he has my back. I have a call in to the hosp and I am awaiting a call back to see if the meds are ordered. If they are, then all is okay. If not, then my pcp will call in the rx for all the meds so that I can self medicate.

    I told him all about the visit yesterday, and he was not surprised at all.
    Anyway, he will be available by phone to me and any of the nurses tomorrow, should any problems develope. I feel a little better, but still scared and still an emotional wreck. I am just to tired to handle much of anything these days.

    The pcp feels that I need the blood tomorrow and should go through with the transfusions. So I will. I'll take hubbys ipad so I can keep you all close to me. I'm going to need you guys tomorrow. Hubby will be there for a little bit when I first get there, but then has some work to do. I'll be there from 8am till at least 6pm if I have 2 units, later if I have 3.

    Thanks again for your caring support. I agree that the oncs are A**H****!!!!!

    Hugs to you John
    Lisha
  • forme
    forme Member Posts: 1,161 Member
    #4
    forme said:

    Thanks John
    Hi John

    Thanks for responding to my fears. I just talked to my pcp and he has reassured me that if there are no pre/post meds ordered he has my back. I have a call in to the hosp and I am awaiting a call back to see if the meds are ordered. If they are, then all is okay. If not, then my pcp will call in the rx for all the meds so that I can self medicate.

    I told him all about the visit yesterday, and he was not surprised at all.
    Anyway, he will be available by phone to me and any of the nurses tomorrow, should any problems develope. I feel a little better, but still scared and still an emotional wreck. I am just to tired to handle much of anything these days.

    The pcp feels that I need the blood tomorrow and should go through with the transfusions. So I will. I'll take hubbys ipad so I can keep you all close to me. I'm going to need you guys tomorrow. Hubby will be there for a little bit when I first get there, but then has some work to do. I'll be there from 8am till at least 6pm if I have 2 units, later if I have 3.

    Thanks again for your caring support. I agree that the oncs are A**H****!!!!!

    Hugs to you John
    Lisha

    Yes on the meds
    Hi

    I called the infusion treatment area myself, since I did not get a call back from the cancer center. The nurse was very kind and looked up my orders. The pre and post meds are ordered. At least that worry is over.
    I'll keep you updated as I go along.
    I'm just such a wreck today and it's really doing a number on me.
    I'm going to watch a movie right now and just try to relax a little.
    I'll check back later on today.
    Lisha
  • jimwins
    jimwins Member Posts: 2,107
    #5
    forme said:

    Yes on the meds
    Hi

    I called the infusion treatment area myself, since I did not get a call back from the cancer center. The nurse was very kind and looked up my orders. The pre and post meds are ordered. At least that worry is over.
    I'll keep you updated as I go along.
    I'm just such a wreck today and it's really doing a number on me.
    I'm going to watch a movie right now and just try to relax a little.
    I'll check back later on today.
    Lisha

    Hi Lisha
    Hi Lisha,

    I wish your oncologist was as caring/thoughtful as your PCP.
    It's sad your PCP wasn't surprised about the oncologist behavior as well.
    I'm glad he's got your back tomorrow and you confirmed
    the pre/post meds - one less thing to worry about!

    It's so good to have John back on - $$$ and all ;).

    I'll try to check in as much as I can tomorrow.
    Enjoy your movie, relax and get some rest.

    Hugs,

    Jim
  • forme
    forme Member Posts: 1,161 Member
    #6
    jimwins said:

    Hi Lisha
    Hi Lisha,

    I wish your oncologist was as caring/thoughtful as your PCP.
    It's sad your PCP wasn't surprised about the oncologist behavior as well.
    I'm glad he's got your back tomorrow and you confirmed
    the pre/post meds - one less thing to worry about!

    It's so good to have John back on - $$$ and all ;).

    I'll try to check in as much as I can tomorrow.
    Enjoy your movie, relax and get some rest.

    Hugs,

    Jim

    Thanks Jim
    I am feeling some better. I watched a movie and just rested. Still a little scared about the whole process tomorrow, but I can do it!
    Hopefully all will go smoothly and I will do fine without any reactions. Who knows, I may just sleep through most of it. Between the pain meds, the nausea meds and the benedryl I'll be fighting to stay awake...
    I will check in with all of you, for sure. You all get me through some tough times and I need you all so much.
    I agree, it's so nice to hear from John. He was the first one to welcome me when I joined.
    Talk to you later.

    Hugs
    Lisha
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #7
    forme said:

    Yes on the meds
    Hi

    I called the infusion treatment area myself, since I did not get a call back from the cancer center. The nurse was very kind and looked up my orders. The pre and post meds are ordered. At least that worry is over.
    I'll keep you updated as I go along.
    I'm just such a wreck today and it's really doing a number on me.
    I'm going to watch a movie right now and just try to relax a little.
    I'll check back later on today.
    Lisha

    1/2 way there
    Lisha,
    At least you got that pre-med out of the way. I will be thinking of you tomorrow. I will be sitting in the infusion chair getting my 3rd R. One more to go and done. I know there is a 3 hour difference and I will be finishing up just as you get started,but still be thinking of you. I will be dopey the rest of the day (Hey,Jim theres your Que)from the benedryl,but will still be checking the site all evening.It's a little after 10pm here in NC now,so only 7pm in California.I am sure you are resting as best as you can right about now. Believe me I know how the thoughts get the closer we get. Just try to rest and thinking of you. John
    3RD ATTEMPT to post!!!!!!!!!!
  • forme
    forme Member Posts: 1,161 Member
    #8
    COBRA666 said:

    1/2 way there
    Lisha,
    At least you got that pre-med out of the way. I will be thinking of you tomorrow. I will be sitting in the infusion chair getting my 3rd R. One more to go and done. I know there is a 3 hour difference and I will be finishing up just as you get started,but still be thinking of you. I will be dopey the rest of the day (Hey,Jim theres your Que)from the benedryl,but will still be checking the site all evening.It's a little after 10pm here in NC now,so only 7pm in California.I am sure you are resting as best as you can right about now. Believe me I know how the thoughts get the closer we get. Just try to rest and thinking of you. John
    3RD ATTEMPT to post!!!!!!!!!!

    Thinking of you
    John

    I will be thinking of you too. We will be dopey from the benedryl together. I am going to try my best to keep you and everyone updated throughout the day.

    I am relieved that the pre and post meds are set up. One less worry.

    Since I am going to be there all morning, afternoon and into the evening I got put on the list to have one of the comfy beds. My backside is still so black and blue from the fall, I think sitting in the chair the whole time would be near impossible! I am happy about the bed, since I am not a morning person and these days I mostly sleep. I can switch to a chair if I want to during the day. Just happy to have a bed and a quiet room to myself.
    Huge hugs for you.
    Lisha
  • nikkig43
    nikkig43 Member Posts: 73
    #9
    Hi Lisha
    I think you did everything right. It's important to always stand up for yourself and make sure that everything is done right. If they hadn't been willing to order the pre and post meds, then they better have had a damn good explanation why they weren't necessary this time.
    You are so strong. Probably stronger than you think you are.
    Try to only think positive thoughts now. Imagine yourself finished with the treatment and feeling a lot better.
    Everything is going to be OK.
    Keeping you in my prayers.
    Nikki
  • jimwins
    jimwins Member Posts: 2,107
    #10
    forme said:

    Thinking of you
    John

    I will be thinking of you too. We will be dopey from the benedryl together. I am going to try my best to keep you and everyone updated throughout the day.

    I am relieved that the pre and post meds are set up. One less worry.

    Since I am going to be there all morning, afternoon and into the evening I got put on the list to have one of the comfy beds. My backside is still so black and blue from the fall, I think sitting in the chair the whole time would be near impossible! I am happy about the bed, since I am not a morning person and these days I mostly sleep. I can switch to a chair if I want to during the day. Just happy to have a bed and a quiet room to myself.
    Huge hugs for you.
    Lisha

    Good luck today
    I'm glad you got a bed and a quiet room.
    At least a couple small things are going your way for a change.

    I'll be thinking of you and John having your benadryl dreams today;).


    Hugs,

    Jim
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #11
    forme said:

    Thinking of you
    John

    I will be thinking of you too. We will be dopey from the benedryl together. I am going to try my best to keep you and everyone updated throughout the day.

    I am relieved that the pre and post meds are set up. One less worry.

    Since I am going to be there all morning, afternoon and into the evening I got put on the list to have one of the comfy beds. My backside is still so black and blue from the fall, I think sitting in the chair the whole time would be near impossible! I am happy about the bed, since I am not a morning person and these days I mostly sleep. I can switch to a chair if I want to during the day. Just happy to have a bed and a quiet room to myself.
    Huge hugs for you.
    Lisha

    I'm Off to see the wizard !!!
    Lisha,
    I'm off to see the Wizard. Be thinkin' of ya".Good Luck. John
  • jimwins
    jimwins Member Posts: 2,107
    #12
    COBRA666 said:

    I'm Off to see the wizard !!!
    Lisha,
    I'm off to see the Wizard. Be thinkin' of ya".Good Luck. John

    LOL
    Watch out for the flying monkees, John ;).
    Won't they be migrating soon? LOL.

    Big GO-rilla hugs to you both today,

    Jim

Discussion Boards