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This may be my last Christmas, or so I'm told.

butterfly23's picture
butterfly23
Posts: 257
Joined: Mar 2008

Hi Everyone, I haven't written because I've had alot going on, I'll try to keep it short. In the middle of the night last Thurs I went to the Hosp. I had severe pains in my lower back but kinda on the side, I thought maybe gall bladder. After x-rays and blood work, I was sent home and told to to enemas and stool softners, I was completely backed up, due to all the pain meds I take (I have mets to lungs and spine). I did this for a few days and nothing, my Dr. told me to go back to Hosp. which was last night. They took soooo many viles of blood, ran tests and did a CAT of abdomen and also a rectal exam which came back normal. After being there for 7hrs. the dr. came in and said my reg Onc. is not on call but his partner is and he looked everything over. They want me to double up on pain meds and try to reg. everything and wanted to know if I wanted to stay at Hosp. or go home. So, I said "what's the difference?" The nurse litteraly said this is probably your last Christmas. Your spots you had 4 months ago on your lungs went from a handful to hundreds! And I probably have new mets to the spine. I have done 6 treat. of xeloda and olyaplatin. I was scheduled for CAT scans on Monday. Obviously this treatment was not for me. My reg. onc. called me this morning. I have never asked him how many months or years do I have left, He's a dr. not God. He did say it is not good news, however I do have another treatment I would like to try on you, so yes I am still treatable. I have never had anyone tell me how much longer I have to live. I must be in shock, my family is a complete mess! I just had an awesome Surprise 40th birthday party! (DISCO THEME) how can this happen a few days later? I feel terrible for my family, they are sooo upset! I am the youngest of 4 children, I am the only family my husband has, luckily we live in an in-law apt downstairs from my parents! I just wanted to share my new news! On a lighter note, I do wish everyone a Merry Christmas and a very healthy and Happy New Year

pokismom's picture
pokismom
Posts: 153
Joined: Jul 2009

I am so sorry for all your pain and suffering. By reading the boards, I can tell you that the doctors are not a very good judge of time anyone has. Please keep the hope alive, I know its hard but you need to have it. Someone once told me, only god knows how much time we have. Take care....
Much Love
Donna

karguy's picture
karguy
Posts: 1024
Joined: Apr 2009

Merry christmas,and happy new year.I hope you have many more.At least your still treatable,and there is still hope.One thing I have learned over the years is that some nurses are idiots,and only know a little of what they are talking about.They are not god,so don't feel bad yet.Enjoy your holidays.

kmygil
Posts: 881
Joined: Feb 2007

Hi Sweetie,

I am sorry you got this news and I understand that you are in a state of shock. HOWEVER, you are still treatable, so try to keep a positive outlook and look forward to the future. I know that's easier said than done, but remember, they're talking statistics, not individuals. I will keep you in my prayers.

Hugs ,
Kirsten

HollyID's picture
HollyID
Posts: 951
Joined: Dec 2009

I'm so sorry you're in so much pain.

Secondly, I'm an RN, and even I wouldn't say anything like that to anyone. Even though I've been called a witch and other names, I have nothing that lets me predict the future. My crystal ball broke long ago. She had no business saying anything like that. Some RN's have become so cynical and so sour in their profession that sometimes I think they need to find a different career. I work with one such nurse who thought I should I just give up and not have the surgery and not have the chemo, because it's cancer, and cancer kills everyone. NOT!!

There is always hope. You're absolutely right... Their dr's -- not God. Good luck and please don't let what she said get you or your family down. She needed someones dirty sock stuffed in her mouth.

**HUGS**

SandyL
Posts: 220
Joined: Feb 2009

drs. They do not know what you are capable of and unless they are God, they don't know jack. All you need to do is stick around this forum for a few hours and read a few posts and you will see how many of these folks received the same sobering statements from their drs. years ago. Fight it like the rest of these folks have done and continue to do every single day....I hope your Christmas is wonderful-this one and the ones to come.
Sandy

geotina's picture
geotina
Posts: 2122
Joined: Oct 2009

I am so sorry, if there was anything I could do to ease your pain and heartache I would so do that for you. As for that nurse, she was so out of line words cannot describe how angry I am at her for talking to you like that. You are fighting for your life, and you already know that, she did not have to add to your misery. Your onc said he has something else to try so don't give up, keep fighting for each hour, each day, each month. I will keep you in my thoughts all weekend and please come back and let us know what the game plan will be. My hubby also has mets to liver and lungs so I know how distresing this can get, I truly understand. Please take care, have a good cry, and try to stay calm until your onc appointment. Best wishes and take care - Tina

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

Karyn, my heart is just breaking for you! I can't believe the nurse would even say such a thing! Even if a doctor had said something like that out in the hallway, she had no right to say those things or guess about your bone mets!

Next Monday, I'd suggest you call the hospital and talk with someone about her actions. Maybe you can protect someone else from her vile attitude.

Girl, you are the champion of positive thinking and I'm going to bet things will look a bit different in a week or so. Right now, let's just focus on THIS Christmas and let God worry about next year and all the next years He has planned for you. Heck, any of us could die in any number of ways before next year. Right?

So, I'm going to be praying, as will many others and I hope you can make this a memorable Christmas for your precious hubby and parents.... one you'll all remember for many years.

Big hugs and loads of love,
Diane

butterfly23's picture
butterfly23
Posts: 257
Joined: Mar 2008

I think I wrote about what the nurse had said, Yes the dr. told her to say it to me. When we were leaving she said how she hates to give bad news out and how some dr. gave her brother-in-law only a few months to live and years later he's fine. She was very sympathetic towards me. He, however is NOT MY dr. and should have sent the reports to my onc. first before telling me this! Thank you all for writing me back.

p.s. my sister and husband were in the room at one point together yesterday and out of the blue she started to sing a part of the song "you've got a friend" she had no idea of OUR little semi-colon story behind it! STRANGE, but such a good feeling!
Karyn

Julie 44
Posts: 479
Joined: Oct 2008

Karyn,
Make sure you get a second opinion on what needs to be done next..You are your own advacte so speak up for yourself and don't settle on ANYTHING you don't think is right...Yes I am taking my own advice too....
Focus all of your thoughts on the minuet at hand otherwise we make ourselves CRAZY....Every tells me not to let cancer define my life... well I am not.....
They told me it spread to my liver now and its inoperable...I am not excepting that answer and I have an appointment with a liver specialist on Monday..So yes I know how freaked out you are but I also know my family needs to have a "normal" Xmas cause this also might be my last one but I REFUSE to believe that answer REFUSE REFUSE REFUSE.....So hang in there and enjoy your holiday and deal with it from then on...Keep us informed on whats happening.....JULIE

just4Brooks's picture
just4Brooks
Posts: 988
Joined: Jun 2009

Hi Karyn.. Sorry you got a old WAR HORSE for a nurse that day. That's what we called the mean nurses when I worked in the Med feild. Don't let her or that******** dr ruin your Chistmas. They dont know you our you're will to fight. I read your post and it just made me sooo mad!! Don't listen to stuped people...

Life is funny sometimes
Brooks

GOOFYLADIE's picture
GOOFYLADIE
Posts: 233
Joined: Aug 2009

Karyn, with all that is in me I wish you a very Merry Christmas. Please do not let the unknowing get to you. Use it as your ammo to fight this hideous disease. I was once told the same thing. 11 years later I am still here cancer Free. People say things out of uncertainty, out of upset, out of fear, out of what a piece of 2x2 =4 and we have proof on this site 2x2 does not always = 4. Be optomistic, move forward keep smiling and try to never let them see you sweat. They work much harder, when they think you don't have a clue, but question and question everything and they will work diligently. They just do. It shows you are on there side and working as a team. Hugs to you and your family, I am so sorry you had to deal with medical professionals being so unprofessional. this group can start changing the way the medical field works if everyone stays on the same plate and expects respect, gives respect and shares everything equally. God bless you, I will waiting to hear good news from your new treatment.. Make it a Great Day!! goofyladie (Cass)

tootsie1's picture
tootsie1
Posts: 5063
Joined: Feb 2008

I know this has thrown your Christmas into a whole new gear you wern't expecting. I'm so sorry you had an unfamiliar doctor and nurse who were so insensitive about your feelings. Try to hang on and wait to see your doctor and discuss the other treatment he has for you. I pray that will work better for you.

*hugs*
Gail

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Dear Karyn,
So sorry that this news was thrown at you right before Christmas. I pray that you have some joy and peace tomorrow. I hope things go well with your onc next week and you get a plan in place that works for you!

Take care.

Aloha,
Kathleen

John23's picture
John23
Posts: 2140
Joined: Jan 2007

Re:
"They.....
...............wanted to know if I wanted to stay at Hosp. or go home.

So, I said "what's the difference?"

The nurse litteraly said this is probably your last Christmas."

It sounds like that "nasty nurse" managed to bring you back to
your senses and back to the family that you love, for -this- holiday,
at the very least!

We all forget at times just how mortal we really are. We might
be in pain so bad, that it clouds our ability to see clearly.......

Or so fearful about tomorrow, that we totally forget about living for today.

I hope you and your family have a very wonderful and special Holiday,
and many, many more!

Good Health to all!

JDuke's picture
JDuke
Posts: 443
Joined: Nov 2009

I hope you and your family can put this unsettling news on hold and try to enjoy your Christmas for what it is and not what it might be. Soak up the good advice and the encouragement of those here that have been in your shoes. They have walked ahead of you so that the path will be easier for you to follow. Many have been given a "window of time" and proved that the Drs. do not have the power to say how long any of us are going to be here. God is in charge. I am praying for you.
Warmly,
Joanne

feniks's picture
feniks
Posts: 33
Joined: Mar 2009

please look this site:http://www3.interscience.wiley.com/cgi-bin/fulltext/112369714/PDFSTART?CRETRY=1&SRETRY=0.My wife have 9 mets in her right lung and she did surgery on her left lung and took out 13 met.Now we wait another surgery to do right side.This is in Germany.Don't be desperate,Merry Christmas!

Topher67
Posts: 19
Joined: Nov 2009

So sorry to hear you are getting news like that, especially during this time of year. Don't get too mad at the nurse, I'm sure she was only trying to help. I know by working in the medical field that unless your name has the initials "MD" you aren't supposed to say anything that could be considered a diagnosis, and I'm sure she could have "suggested" that you go home for Christmas in a more tactful way. Please, please don't give up hope now. Keep fighting and keep your spirits up as long as possible. It really does make a difference. Best wishes and all my love and support to you and your family. Go get em tiger.

Merry Christmas and many many more Happy New Years to you.

Chris

PS- NO ONE knows how long we are going to be here. Only God knows, and when he is ready for you to return home, he will call you. Until then, you are here as long as he wants or needs you to be. You do not have an expiration date stamped on your foot.

PhillieG's picture
PhillieG
Posts: 4912
Joined: May 2005

but any one of us may not be around next Christmas. Like I've said numerous times, cancer is not the only thing that can take us out.
I'm sorry that you are not feeling well and even sorrier that you have a bone-headed nurse. Like you mentioned later in your posts, you know someone who was told they had x amount of time and there are still around years later.

We should all live our days like they are our last because they just might be.
peace
-phil

Annabelle41415's picture
Annabelle41415
Posts: 6691
Joined: Feb 2009

So sorry that you haven't been feeling well and then to get this news. It has to be devestating, but glad they still have more options for you. Keep up the hope and wishing you the best of new year. Merry Christmas!

Kim

AceSFO's picture
AceSFO
Posts: 230
Joined: Sep 2009

So sorry to hear your news, and am dumbstruck that any medical professional would say such a stupid thing. They have no way of knowing. I think I've posted before about my parent's friend who was diagnosed with stage IV brain cancer which couldn't have been worse. His docs said he had about 3 months tops, so he decided against any form of treatment. That was over ten years ago, and he's doing fine. Hang in there and you know we're all here pulling for you.
Sending you light and love this Christmas and looking forward to doing the same next Christmas!

with love,
Adrian

Sonia32's picture
Sonia32
Posts: 1078
Joined: Mar 2009

You are one brave lady and I believe you have many years on this earth, bleepin doctors and nurses it makes me so angry when they give a time scale only God knows whos coming and going. Heck you can be hit by a bus tomorrow can they predict that. You just keep fighting girl, and you will get through this and we are all with you.

Hugs Sonia

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Dearest Karyn

I saw the title of your post and I began to cry as I was thinking of you - I just got your card in the mail and it was so sweet to get a card from you - my Dad came to the door and I had to dry the tears quick and get myself together - he just left now and I can come back and read this and talk to you.

Your post about this being your last Christmas strikes a familiar chord with me - only 2 years ago the doctors told me that 2007 would be my last one too! 2 years later I'm still around and now doing well, but I remember how sobering it was to hera 3 different doctors tell me the same thing - and then I got mad and decided to show them! So, this was a tear jerker to hear you it - but I believe somehow in my heart that it will be different for you - I have to believe that even if things don't look like that - and I want you too.

And from your post this parargraph also touched a chord with me:

p.s. my sister and husband were in the room at one point together yesterday and out of the blue she started to sing a part of the song "you've got a friend" she had no idea of OUR little semi-colon story behind it! STRANGE, but such a good feeling!

Yes! OUR little semi;colon story about it - our family anthem voted on this year - and how true it is - you will always have a friend in me and a friend in the heart of Texas!

Don't let it wreck your holidays - try and calm your family down if you can so you can enjoy each other!

Thanks for writing, thanks for sending such a nice card this year, I've got it up in the house.

Blue for you, but not giving in :)

-Craig

KATE58's picture
KATE58
Posts: 300
Joined: Nov 2009

Christmas of 2005 was supposed to be MY last christmas.
What year is it now?
oh yeah,two thousand and NINE!!

KATE58's picture
KATE58
Posts: 300
Joined: Nov 2009

Sorry, that was supposed to be encouragement,
but after I read my post,I thought it sounded sarcastic.
THERE IS ALWAYS HOPE!!
no one knows when any of us will die.
as long as you are breathing ,there is hope.
good luck
God bless
kATE

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

Hope you had a wonderful Christmas, filled with laughter, smiles, good food and lots of love!

Diane

snommintj's picture
snommintj
Posts: 602
Joined: Mar 2009

Yeah, this was my second last christmas. I had a blast!

heatherstar70's picture
heatherstar70
Posts: 39
Joined: Sep 2009

please never give up hope you do not have an expiration date stamped on you.. always keep fighting and never give up hope... god chooses when to take us not a dr.. i do believe we should all live our lives to the fullest and be happy with each day god gives us and not put things off.. i hope you can take what the nurse or dr said and put it in the back of you mind... i know it is hard but you have to keep moving forward.. you are in my thoughts and prayers and i hope you feel better soon in body mind and soul..

wishing you a merry christmas and a very happy new year

lots of love
Heather

phoebe1017's picture
phoebe1017
Posts: 37
Joined: Sep 2009

I haven't been on this site very long but it is obvious to me that the doctors are just guessing when they try and give a time frame. They are just going by statistics. So please, stay focused and just move on to the next course of treatment. Keep your mind focused on staying strong! Good luck...my thoughts and prayers are with you!!!

lcarper2
Posts: 638
Joined: Dec 2009

Well I told everyone that they didn't need to tell me how long they thought I would be around because they have no idea what God's plan is and I have claimed his healing and you should too. If someone said that to me I would look down and say my my you aren't wearing sandels so how do you know what the future holds for me. Please don't let this bring you down we are fighting every day for another day and this can really set you back in you recovery process. My pray is that God will give you a sign that he has healed you.

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

A gal pal 2 years older than me and no health issues went to bed on Christmas Eve ready for a big family Christmas. Her husband woke to her seizing a few hours later. They disconnected her from life support this afternoon. So far, they don't know if it was a stroke, brain bleed or clot but last year was her last Christmas and she had no idea, no warning, nothing. Her children and grandchildren spent Christmas Day in the ICU waiting room.... Like Phil said, we have no guarantee.

AnneCan
Posts: 3692
Joined: Oct 2009

Diane,

I am very sorry to hear of your loss. My thoughts are with you and your friend's family.

AnneCan
Posts: 3692
Joined: Oct 2009

Karyn,

I am really sorry to read the words you heard & for the insensitivity with which you heard this. Try to focus on taking good care of yourself and staying as well a you can. I would mark on my calendar to make sure I stopped by to wish this nurse/doctor a Merry Christmas & do it every year after that.

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Karyn,

I'm sorry that I'm one of the last ones to reply to your post- been busy and kind of out of it over Christmas and hadn't read many posts. Anyhow, I just wanted to say that I feel for you having been told this "news" by a nurse. I'm glad your doctors haven't ever told you "how long you have" before- they fortunately knew better than to make such a proclamation. This nurse was WAY out of line to say such a thing to you!!! I hope you realize that just because she said such a thing doesn't mean that it's going to be true! No one knows the "when" or the "how long" for sure!

So many others have given you wise advice already. God does hold all of our lives in His hands, is what I believe. Like others said, any of us could die tomorrow from another cause, or we could surprise our doctors and live for quite a long time yet to come.

I wish I knew more how this treatment I'm on from Dr. Cantrell in Tennessee was working so I could recommend it or not to you. It's really worth checking out, though- he's had good success for several people and that's why I went to see him and why I started on the treatment! I'm just into it three weeks and have several weeks to go still before I get a scan to see how it's working. I get a CEA tested tomorrow, but it's still pretty early to tell with that & I've been warned that the CEA will go up before it starts to come down, so to not be alarmed if it's high. Some amazing stories have come out of that office though- people who were doing poorly on other chemo treatments who did really well on this treatment of lovastatin and interferon. So far, I'm faring pretty well on it. I've had some days of feeling achy and sluggish, but definitely have done better than on the chemo. No diarhhea or nausea, which is a good thing.
If you're interested in checking out Dr. Cantrell's website, it's: www.neoplas.org
You take care and remember that an insensitive nurse does not control your future! I know the news of now having "hundreds" of lung nodes isn't good news to hear, but there still may be a treatment that can work on them- you've just got to find it! I also have "innumerable pulmonary nodules", as my one scan report stated, so we may have similar situations in that, and I don't plan on giving up finding a treatment that will get rid of them!

I hope you've started to feel a little bit better over the past couple of days.
Do take care!

Lisa

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