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KDR 07-25-2013 12:37 PM

Nervous beyond
 
After the huge mistake made on me in the OR, my confidence level is at ZERO when it comes to medical care. I am suffering the physical aspects of the disaster as well as the psychological. I am NERVOUS NERVOUS NERVOUS about the first infusion of Navelbine tomorrow. I now know how easy it is to die, even with several doctors standing over your body. I am trying to come to a sense of peace about it but am getting very uptight about tomorrow's infusion. PTSD has returned but I have not, not quite yet.
Tell me it's all good.
THANK YOU
Karen

ammebarb 07-25-2013 12:50 PM

Re: Nervous beyond
 
Oh, how I wish that my words could take away all your anxiety.....Gentle hugs and prayers coming your way.

Barb A.

'lizbeth 07-25-2013 12:56 PM

Re: Nervous beyond
 
KDR,

That is so devastating to lose faith in those who are caring for you.

Perhaps if you find your voice and inform the staff tomorrow that you had a bad experience and are very concerned about another mishap. Ask that they check and double check everything to make you feel safer. Please!

I pray that everything goes more smoothly, so that it helps to restore your faith in your medical team. And I pray that the "navy beans" kicks any cancer cell's patooties so you can be NED!

Wishing you good fortune & good health!

ElaineM 07-25-2013 01:12 PM

Re: Nervous beyond
 
Hugs !!
I hope the Navelbine kicks the cancer's butt !!
I know the feeling of loosing trust in one's doctors.
My doctor sent me home from his office with full blown
pnemonia, trouble breathing and no antibiotics last Friday. I called 911 and ended up in the hospital for 4 days. I am still taking the antibiotics. My doctor is going to get a big piece of my mind when I see him.
Tell the staff who will be taking care of you to double check everything before they start your therapy.

karen z 07-25-2013 02:45 PM

Re: Nervous beyond
 
When I felt nervous I asked the chemo folks to show me the labels, the dosages and to double -check ALL. They NEVER had a problem with this. If they do.............complain to the head nurse and your doctor.

NEDenise 07-25-2013 02:47 PM

Re: Nervous beyond
 
Karen,
I agree with the idea of letting the team know about your harrowing experience and requesting/demanding a little extra TLC.
Praying for peace, and a return to health for you!
Denise

Elaine!
My goodness! So glad you're on the mend, but sheesh! what a scary experience!
Sending love and light to you too!
Denise

KDR 07-25-2013 04:36 PM

Re: Nervous beyond
 
Oh, my chemo nurses are the BEST! BEST BEST BEST! They are the creme de la creme. The incident didn't happen anywhere near them. They are my peace and I love them. Fortunately or unfortunately, I have been at the center so long, they are like my extended family. They KNOW me. This is a separate facility from where my death nearly occurred. (Or maybe it did, still trying to figure that one out because my husband was told that I stopped breathing). That was at the main hospital, which is the scariest place on Earth to me. Got to get over it. I guess if I didn't have so many healing wounds and punctures and internal pain, it might be a little easier. But since I feel like I was cut in half by a train...it's hindering my good space.

It's how my body is going to react! I have been so weakened (if I had to rate, probably at 55% full strength right now), and white coats are not what I want to be around at all. I am still in shock. And to boot, someone coded (that's right, someone lost their heartbeat) in her treatment suite about two months ago. Chemo nurses descended on her like no tomorrow...she turned out o.k. but it affected us all!

So, Ativan it is. I'll see how much I can take, I'll push the limits. To the top. Maximum allowable dosage. This is PTSD, that's what it is. This is not Karen. But just like the World Trade Center, no one could tell me it wasn't real, it wasn't big. Time is what helps. And after 10 years, I just got to the point where I could drive myself to the center and not be afraid of high-rises. All that progress is hanging on the cliff, friends.

Karen

tricia keegan 07-25-2013 04:56 PM

Re: Nervous beyond
 
Sending good wishes karen and agree all chemo nurse's are the best!!!:)

CarolineC 07-25-2013 05:19 PM

Re: Nervous beyond
 
Wow, you have been through SO MUCH-you WILL find Karen again. Fortunately you can trust your chemo team. Maybe they can slow the infusion since you are still healing.

I have a very hard time trusting my local MO. Three years ago, when it came time to possibly have rads he said he didn't think I would need them, so I asked to be referred to a larger centre where the RO recommended I have them. Two years ago when I was having issues (that's what I call them now) and ALOT of pain he wouldn't order a bonescan. I went to my gp who ordered one. (she had been telling me I was fine when I told her something wasn't right for eight months) When I had the scan a week later I had a 3cm lesion through the sternum to the tissue behind where a shadow was noticed, and THEN people listened. I have major PTSD and trust issues because of those and other incidents with other doctors. It takes alot for me to advocate for myself and many times I will go to an appointment and think "which wall shall I bang my head against today" because I'm still having great debates with my local MO.

Your chemo facility at least is separate from the hospital and your nurses are like your family-a real comfort. You are healing and all WILL be good tomorrow.

linn65 07-25-2013 05:34 PM

Re: Nervous beyond
 
Speechless in Indiana with everything you have been through! I hope you are with someone tomorrow that loves you and that can be your support when it's hard supporting yourself. Let them be strong for you and believe with them that you can get thru it.

Cry, breathe, make inappropriate jokes and lastly take that Ativan when your feet hit the floor in the morning! #yougotthis.

Pray 07-25-2013 11:42 PM

Re: Nervous beyond
 
Your in my prayers. Gods blessings to you.

JillaryJill 07-26-2013 07:21 AM

Re: Nervous beyond
 
Thinking about you today...wishing you strength and great results as you go through this new round of treatment.

sarah 07-26-2013 07:41 AM

Re: Nervous beyond
 
Hello Karen,
I hope everything went well today and you are feeling less anxious.
You've been through a lot and survived, you're brave and have a wonderful attitude so I'm sure you're anxiety will pass.
good luck.
hugs and love
sarah

caya 07-26-2013 02:51 PM

Re: Nervous beyond
 
From one Caryn to another Karen -

I hope it all went well today, and that Ativan did its job.

all the best
caya

BonnieR 07-26-2013 03:31 PM

Re: Nervous beyond
 
I share your distrust instinct! Glad to see you will have Ativan on board as needed
Keep the faith. What else can we do?

KDR 07-26-2013 07:05 PM

Re: Nervous beyond
 
Well, I was back with my Friday group. And my chemo nurses and I was fine. They know "how" to talk to me and it went perfectly fine. I will work on the trust issue. Only time will heal that.
AND, happy to report, that despite the commotion, my CEA and 15-3 are in the normal range, and my liver function has returned to pre-T-DM1 levels. GO Karen!
Still in so much discomfort, popping Hydromorphone for pain (turns me into a sleepyhead)...want my summer back and I'm going to get it!
Thanks for sharing so much with me.
Kicking and screaming, even at 55%, go away cancer, I'm getting back on top,
Karen

NEDenise 07-26-2013 08:01 PM

Re: Nervous beyond
 
You go girl!
Keep that fighting spirit going strong!!

Sending love and prayers...
Denise

carlatte7 07-26-2013 09:10 PM

Re: Nervous beyond
 
So glad that all went well...prayers for you!

KsGal 07-29-2013 03:06 AM

Re: Nervous beyond
 
Im glad that the nurses were able to make you feel more relaxed and confident. With your drive and attitude, you at 55 percent have more power than most people at 100 percent. You just keep on kicking cancer to the curb. Prayers for continued success on the treatment plan... hugs.

Nancy L 07-29-2013 08:45 AM

Re: Nervous beyond
 
Karen,

Do you believe TDM-1 brought you down to 55%? I have had 14 doses and I feel that is what has happened to me. How high did your T. Bili run before you stopped and where is it now? Thanks for sharing.

Nancy


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