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Saw oncologist today ------------ & I'm scared

pinkflutterby's picture
pinkflutterby
Posts: 615
Joined: Jun 2009

I saw my onc's partner today, shes out with her baby until the end of December. He said he liked my file that 3 volumes meant I was a success story :))) BUT also said that since they had to remove the port from my head last week he would have to do the treatment directly into my spine - he said it was a very painful procedure :( Im scared!!! I go next wednesday at 11 for the procedure. Ill have it that way at least 2 times before they put yet ANOTHER port in my head to resume the treatments to my head.

Ya'll give me power and strength to get through the next few months -- pleaseeeee :)

HAPPY THANKSGIVING!!!!!!!!!!!!!!!1

♥ Libby

Scotch Freckles's picture
Scotch Freckles
Posts: 273
Joined: Apr 2010

Oh Libby,

My heart aches for you. I can't imagin going through what you are enduring. Rest, keep you strength up, good thoughts, and laugh a lot. Don't let the beast or doctor's drag you down. You said your doc was a man, well most men are sissy's about pain and he probably told you the worse instead of what could be. Just remember we all will be there with you if not in body in spirit.

With All My Best,
Kathryn

seof
Posts: 826
Joined: Jun 2007

I am sorry you have to go through this. You are in our prayers.

seof

ladyg's picture
ladyg
Posts: 1577
Joined: Apr 2010

to hear you have to go through something like that. I will keep you in my thoughts. Try not to let it ruin your Thanksgiving.

Hugs,
Georgia

carkris's picture
carkris
Posts: 4529
Joined: Aug 2009

I know very little about this procedure I beleive it is intra thecal. However it is not right to tell you it is painful without telling you what they will do to make you comfortable during the procedure. I dont think you will have to endure this without help. perhaps you can call the office for further clarification. Libby you are such a doll and have gone through so much. We are always here for you !

Aortus's picture
Aortus
Posts: 967
Joined: Jan 2009

It really was uncool of the onc to say that the next treatments will be painful. There has to be SOMETHING they can do. I remember Moopy's St. Louis oncologist, standing there with her eyes narrowed like slits, practically hissing "MY chemo patients don't suffer from their treatments." Pleeeeeease hang in there for yourself, Libby, for your family, and for all of us. You are always in our thoughts and prayers.

susie09's picture
susie09
Posts: 2933
Joined: Jul 2009

Wishing you good luck with your procedure next week. Just know that we all are here for you!

Noel's picture
Noel
Posts: 3101
Joined: Apr 2009

I'm so sorry too Libby, that you have to go through this after all you have already done. I pray for you and hope you find strength to continue fighting!

Megan M's picture
Megan M
Posts: 3001
Joined: Dec 2009

Good luck tomorrow Libby! I will be thinking of you and praying for you!

Big hugs,

Megan

disneyfan2008
Posts: 5504
Joined: Oct 2010

so sorry...you are going through this....

phoenixrising's picture
phoenixrising
Posts: 1510
Joined: Feb 2007

Aw Libby, I'm sure they'll give you something for the pain. As another poster mentioned, give them a call to reassure yourself. My heart goes out to you and I hope it goes well.
hugs
jan

sea60's picture
sea60
Posts: 2601
Joined: May 2010

I am praying for you that it will not be painful nor uncomfortable as he says. Know that we have you surrounded in love, positive thoughts and prayer.

Let us know how it goes...

Warms hugs,

Sylvia

New Flower
Posts: 4128
Joined: Aug 2009

Libby we will come with you and hold your hand. You will be Ok, please do not be scared.
Thinking of you.
Happy Thanksgiving.
New Flower

susie09's picture
susie09
Posts: 2933
Joined: Jul 2009

I love what New Flower wrote to you Libby. It is exactly what I was going to write. We will be with you!

Sending you all the luck that I can and prayers!

Alexis F's picture
Alexis F
Posts: 3604
Joined: May 2009

I am praying for you too Libby!

survivorbc09
Posts: 4378
Joined: Jun 2009

Strength, hugs, prayers and lots of love are coming your way from everyone on this board!

Jan

RE's picture
RE
Posts: 4630
Joined: Feb 2004

Oh Libby phooey on your substitute onco for being so gruff geez! You will be in my prayers and you never know it may not be as bad as the onco said. Hugs to you, please do not fret too much over this although I realize you probably will.

Hugs to you,

RE

smalldoggroomer's picture
smalldoggroomer
Posts: 1181
Joined: May 2010

I am so sorry Libby, I think it is wrong that this Dr told you that. I am sure they will give yo something for pain. Try not to worry. I would call and get more information about the procedure. Why did they take the port out if they still needed it? You are in my prayers and thoughts We're with ya darlin every bit of the way. Take care Kay

pinkflutterby's picture
pinkflutterby
Posts: 615
Joined: Jun 2009

thank you all for your support!!! Im still worried about the pain ecckkk but we gotta do what we gotta do right?!??!?!?!?!?! I'll be keeping in touch and esp let ya'll know how it goes next week!

They removed the port because it was leaking causing a pocket of liquid pressuring my brain causing seizures weakness dizzyness lots of weirdness.

They want to put another type of port in my head in a couple of months!

VickiSam's picture
VickiSam
Posts: 8477
Joined: Aug 2009

for you and your family. Let us know how you are doing .. Difficult decision, hoping some peace is in your life and a great strong support system is there with you daily.

Vicki Sam

Megan M's picture
Megan M
Posts: 3001
Joined: Dec 2009

Sending you strength and lots of prayers pinkflutterby!

Hugs, Megan

jnl's picture
jnl
Posts: 3873
Joined: May 2009

I am still praying for you Libby! By the way, I love your name. Is Libby short for Elizabeth?

Hugs, Leeza

thanksbetoGod's picture
thanksbetoGod
Posts: 4
Joined: Nov 2010

Libby, please call your oncologist's office, there is usually someone there to answer 24/7. Tell them what was said to you and ask for a call back ASAP from a different doctor to discuss your fears. This doctor does not sound like someone who knows how to treat the whole patient and you deserve better. I'm praying for peace and a good outcome for you. Beverly

fauxma's picture
fauxma
Posts: 3544
Joined: Dec 2008

I think that it is very unfortunate that this onc presented this to you by only saying it is a very painful procedure. While none of us want to go into a treatment not forewarned we also don't need to be scared out of our wits. I went to a site that had some information about spinal chemo and I copied this section for you.
An intralumbar injection is when your caregiver gives your chemotherapy into your spine. It is also called a lumbar injection. Your caregiver will place a needle with the medicine into your spine. Once the chemotherapy is given, the needle is removed. An intralumbar injection may be painful. Your caregiver may use special medicine to make you lose feeling in the area or to make you drowsy before the medicine is given. Ask your caregiver for more information about intralumbar injections.
It seems to me that the onc could and should have mentioned the possibility of using either of these. Would certainly have eased you mind? And since these can be given I would definitely request something. Twilight sleep, a spinal block, something. I think that there are just some caregivers that forget they are dealing with real life people and they have feelings, fears, and need some compassion when being told about treatments.
Like the others said, call and talk with someone about what will be done to make this as comfortable as possible.

Double Whammy's picture
Double Whammy
Posts: 2335
Joined: Jun 2010

Libby- So sorry to hear this news. I'd be scared out of my wits being told something would be "very painful". I hope you'll ask a lot of questions and get some reassuring answers before next week. I'll be sending positive thoughts your way on Dec. 1 regardless. We all have different levels of pain tolerance - it's not a one fits all situation.

Best,
Suzanne

DianeBC's picture
DianeBC
Posts: 3888
Joined: Jun 2009

Good luck on Wednesday Libby!

Hugs and positive thoughts for you,

Diane

Angie2U's picture
Angie2U
Posts: 2993
Joined: Sep 2009

I was praying for you today Libby.

Annette 11
Posts: 381
Joined: Sep 2010

I am so sorry you have to endure this but I am so sure they will have to give you something for the pain. Can you call the hospital or where ever you are getting this treatment and talk to a nurse. Tell them what the dr. said about the pain and you are scared. They may put your mind at ease and just talking about it with the nurse who is knowledgable of the procedure will make you feel better. This is what I would do for sure. I did just that about my port before I went in for surgery because the idea of that going into my skinny chest was scary.
Keeping you in my thoughts and prayers Libby.
Hugs.
Annette

jnl's picture
jnl
Posts: 3873
Joined: May 2009

I'm so sorry for this Libby. You shouldn't have to endure pain. There has to be something your doctor can do to help you. Please demand something.

Tell him if he doesn't, we will all come and beat him up. And, you know we will!

You are in my prayers and thoughts,

Leeza

MyTurnNow's picture
MyTurnNow
Posts: 2694
Joined: Aug 2009

Libby, you are one strong warrior!! As requested, I am sending strength and the power to get through this ordeal. In today's world I cannot imagine that a procedure is performed that is "very painful" WITHOUT any pain drugs. Like someone else said, we all have a different tolerence for pain and a lot of men don't handle pain well. I'm sending you hugs and the knowledge that we will be with you ALL THE WAY!! Let us know what we can do for you and also know that we will be with you even it is just in spirit. Take care of yourself!!

lynn1950's picture
lynn1950
Posts: 2573
Joined: Jun 2008

Your own power and strength is so impressive. I'm standing with you now and Wednesday, sending prayers and love. It was good to read the others posts that you can be given something to make you more comfortable. And boo on the onc doc for telling you about the pain without giving you any reassurance. Keep fighting! xoxoxo Lynn

survivorbc09
Posts: 4378
Joined: Jun 2009

I will send you all of the strength and prayers that I can thru cyber space!

Keep on fighting!

Hugs, Jan

Jean 0609's picture
Jean 0609
Posts: 2365
Joined: Jun 2010

I am so sorry that you have to go through all of this. You are one strong cookie. Sending prayers your way. Hugs, Jean

Gabe N Abby Mom's picture
Gabe N Abby Mom
Posts: 2415
Joined: Sep 2010

It's clear that you're a strong person, and that you plan to do whatever it takes to win this battle with the beast. You've also received great advice, so I will only add my thoughts and prayers for you.

Hugs,

Linda

Ritzy's picture
Ritzy
Posts: 4384
Joined: Aug 2009

Libby, this just makes me so sad. I wish there was something that I could do to help you with this. You have already endured so much and are so brave, so strong!

I truly admire your strength and you!

You know you have my prayers and always will!

Please update us when you can and know that I am sending a rainbow of good luck to you!

Sue :)

P.S. Your picture says "Walking with love for Libby." Just know that all of us are praying for Libby!!!!!

Mama G
Posts: 764
Joined: Nov 2009

Please let us know how it goes. my prayers and thoughts will be with you.

gagee
Posts: 327
Joined: Sep 2010

My prayers are with you. Hang in there. You have many people praying and thinking of you. The angels will be with you during the procedure. God will not leave you to handle this alone. I truly believe that.

Hugs and Prayers,
Diana

mollyz's picture
mollyz
Posts: 739
Joined: Sep 2010

Lord look after Libby and take care of her you didn't bring her this far to leave her, in Jesus name, we all will be thinking of you Libby and know you are much love. MollyZ

DebbyM's picture
DebbyM
Posts: 3294
Joined: Oct 2009

Ofcourse I am sending you prayers and will continue Libby. Please keep us updated.

Hugs, Debby

DianeBC's picture
DianeBC
Posts: 3888
Joined: Jun 2009

This whole board is praying for you and will be holding your hand!

Katz77
Posts: 598
Joined: Sep 2009

Praying for strength and wellness. Take nice deep breaths to help you through your procedure. Will be thinking of you Wed at 1100. Hugs and positive energy, Katz

chenheart's picture
chenheart
Posts: 5182
Joined: Apr 2003

You have gotten such great advice from the Warrior- Surivors here~ I simply want to add my (((((HUGS))))) and an angel or two ^j^ ^j^ to be with you on Wednesday. I can't help but think that if he told you it's going to hurt, you are expecting big pain, and what you get won't be nearly as bad as what you have conjured up! Know what I mean???
And anyway, if we notice anyone causing you undue discomfort, we will all take turns smacking the offender upside the head~ with a "Knock it off, buster!" After all, we'll all be there with you.....

Hugs,
Chen♥

cahjah75's picture
cahjah75
Posts: 2623
Joined: Jun 2010

What the substitute onc said to you was unfortunate. I agree that when you are prepped for the procedure they will give you some kind of pain relief. If no one suggests it, demand it! I will keep you in my thoughts and prayers next Wednesday. It's unfortunate that your port was removed already. I'm hoping all goes well. Please let us know.
{{hugs}} Char

pinkflutterby's picture
pinkflutterby
Posts: 615
Joined: Jun 2009

Ya'll really are the bestest ever!!! I'm calling tomorrow to ask again about the procedure and demand something for the pain. I hope it wont be as bad as he says and he did say the more I can crunch up in a ball (knees to chest) the better it is so I've been practicing that position, the problem is with the radiation my back is very stiff and its hard to get into that position :(

Maybe I'll break all the rules and get drunk before I go in heheheee

Ritzy's picture
Ritzy
Posts: 4384
Joined: Aug 2009

Let us know Libby what you find out. Praying there is something to help you to get through this easily.

Sue :)

heidijez's picture
heidijez
Posts: 441
Joined: Mar 2010

i know you are scared, but you are a strong woman and i am sending you my "brave waves" for your treatment. in addition, i will be bombarding heaven with prayers that the pain will be minimal (if at all). hang in there, kiddo, you can do this!!!

♫♥´¯`•.¸¸.♥♫ Hugs from Heidi ♫♥´¯`•.¸¸.♥♫

Megan M's picture
Megan M
Posts: 3001
Joined: Dec 2009

Sending you lots and lots of good luck and prayers for Wednesday!

Hugs, Megan

mariam_11_09's picture
mariam_11_09
Posts: 693
Joined: Nov 2009

I agree with the others, the Onc. should have indicated what they were going to do to provide you with more confort during the procedure. DId he say what part of it was going to hurt? I had a needle into my spine (many years ago in another part of the world) and the only part that hurt was the needle going in which was very quick after that it was fine. If this is the case you can ask if the Emla cream or cold spray can be given before hand.

Hang in there and just keep breathing deeply. You are in our thoughts and prayers.

take care

DebbyM's picture
DebbyM
Posts: 3294
Joined: Oct 2009

Praying for you Libby!

Hugs, Debby

mwallace1325's picture
mwallace1325
Posts: 806
Joined: Apr 2009

you have to go through this. We're all with you giving you all the strength you need, and then some.

Take care, and hope this is over for you quickly.

marge

Boppy_of_6's picture
Boppy_of_6
Posts: 1140
Joined: Apr 2010

Will be saying prayers for you. God Bless
(((Hugs))) Janice

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