mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

[Candyys03]

Dianne,
You are the first person I have met with 8 years coming up. Mine will be in August.
Our cancer history is a little different but I have the same lung issue now. I have been battling the lungs for a few years.
Be sure that your doctor knows about your pain so they can give you the pain medicine you need.
I know people that have a pain patch and take pain medicine just to function.

Are you wheezing? Do you have a fever? A few times when on chemo I have been wheezing and coughing/no fevor. Sometimes the chemo would make me cough up blood. This is common for any kind of cancer in the lung.
I hope I can explain this correctly like my doctor told me or just look up lung cancer.
The lung walls normally build up mucus. The chemo tears down the walls. Which causes coughing, wheezing, flem sometimes blood. I think the only pain I had was from the ribs from coughing too much.
My lungs have been clear since October but still he cancer remains.

I hope that this helps.
Candy

[jeanette57]

Celebrated today! First wore a beautiful red dress. Got at fanct Thrift store for a dollar! First time a nice dress for RED Hat society. Then the best pot roast dinner - oh yummmmm. Then sat in car reading a book for mom to get her medications. I then got a call and neighbor had a carrot cake for me when I got home. Oh today is a living full and happy day. I then took a 2 hour nap and will try to put a few things outside for washer tomorrow. I don't travel well after dark. So I toss them on a patio chair.

Now have to figure out how to do Valentines. I have a friend taking me to lunch and oh best of all that nice handi man who has been working on the door came by today with an BEAUTIFUL fresh out of his garden cauliflower. OH so tasty fresh grown organic. LIFE IS GREAT TODAY! .

[Candyys03]

Yeah Jeanette!
Have a great tomorrow too!

Candy

[skypup]

I am so tired of docs who only look at the big picture and don't seem interested in the fact that I am in pain and miserable.

I know what you mean, Dianne! The doc that really got the pain and misery? The pain management doc I saw a couple of months ago. I had to request my onc for the referral, don't know if he would have ever gotten around to it. Seems he was comfortable with me being in pain from cancer and just throwing bandaids at it. The pain management guy was completely different, so interested in helping me with that. Have you tried that?

THE "MERRY CHRISTMAS 2014" CLUB: who wants/needs to join? Ashlee, Pollo, Dianne, me… who else??? Those of us with terminal disease hoping to make another Christmas?

[pollo65]

Skypup,
Count me in...gotta admit though that seeing my garden produce some veggies comes first, I am sort of a short term planner myself.
I have been feeling lately like I need to post more and this thread seems like home (thanks to Kathryn.)
pollo65

[Bev G]

I love you all, my stage IV pals. Had a little CEA scare last week but got scanned yesterday and seems everything is still fine. I'm still trying to get used to my new oncologist at Dartmouth, he is so different than beloved onc in Pittsburgh. I have a lot of weird neurological stuff going on with balance, hands and feet. Cant really write anymore because first two fingers on left hand have no grip strength and I'm dropping everything I pick up. The distribution of this issue is very weird. Endocrinologist thinks it's bilateral carpal tunnel + something else. He is worried about the "something else" part so will be going to see neuro very soon.

Sending you all heartfelt, snuggling hugs.

Love,

Bev

[Guinevere]

Sorry to be AWOL, guys. Count me in the "Merry Christmas 2014" club! This became my goal after princess Audrey was born. I want to see the magic of Christmas through her eyes.

Ashlee, I'm so very sorry that you've come to this part of the journey. As you say, who can know how long you have but I hope it's more than the 6 months quoted. I hope the same for you, southernkiwi. I have one more round (49th) and then we'll do a CT. I very well might be joining the "we've done all we can" club. We'll see... I have refused to go on the combo of Irinotecan & Oxaliplatin. I know there would be no quality of life in that regimen and, quite frankly, I don't think the Oxaliplatin will work this time when it didn't work at all the first time around!

Today's the day after disconnect day and I'm feeling like crap which is normal. Doesn't make me feel any better to know it's a normal thing.

Jeanette and Theresa, you both make me smile. You just do. You're both the "little engines that can". It may not feel good or pretty but you both keep on keeping on!

Bev, I'm praying the "something else" is a simple thing. Has your CEA gone down to where it normally is?

Happy Valentine's Day! Remember that loving someone whether romantic or not seems to be one of the things that keeps us going. I know it's certainly helped me!

God bless ~
Gwen

[southernkiwi]

Sign me up for the Christmas club!
Cheers, Carolyn

[jeanette57]

just hit the Valentine Club so guess Easter is next then Birthday then yahoo Xmas club.

Sad day, friend took me out and I got sick on my soup. I had to go home and to bed. darn it. She was so concerned about me had a hard time getting her to go! Darn it. Hate to show weakness as it drives the fear factor for family and friends. Oh well.

Jeanette

[Candyys03]

Count me in too for The Merry Christmas Club 2014!

Candy

[Sharona]

I would love to be part of the 2014 Christmas Club!

Sharon

[Bev G]

Hey! Yippppeeee!! A Christmas party in 2014. Anyone think it would be fun to have a big group SKYPE party? Don't know how many folks here have Skype access, but if anyone thinks it would be fun, I'll look into technically how we could do it. What do you all think?

[pollo65]

Wow, that sounds great. I have access to skype and have used it but that is where my knowledge ends, anyway it would be great to see everyone. Thanks for the idea Bev.
pollo65

[jeanette57]

NEED ADVICE - PLEASE

horders - my 90 yr old mom is a not the TV type of hoarder- most would call her messy. Each room is full so no place to put hospital bed at her house. She has 800 foot shed and 4 ten x tens full. Get the picture. War bride who was bombed out several times, so stuff is important to her!

I am started to "let go" of things in my house. Today had an accident with ostomy and had to have mom come and redo bandages on my foot after shower. I forgot that I had invited a red hat lady at lunch this week to stop by and pick up a large moving box of horse stuff. It was given to me and then left outside in the weather for a year. Nothing important. OH MY GOD - I had to scream, yell and chase mom home. She wanted to "look" at what was there, that leads to begging for the junk...then having a "how dare you treat your mom this way"... been there done that. pissy mom right now. sick me!

ADVICE FOR/FROM END OF LIFERS - what are we going to do with our stuff . GAELAN had party and put out all her goodies. Ok, I am starting giving pictures back to friends (my family would toss them). I have some great art work, so that will give to family but the thousands o little nick nacks that are all around ... lawn art, sneaky owls peaking out stuff. Now she wants that I give her all my cloths.. well tops. My mom has cloths in every room, on hangers, over doors, folded by TV, Flowing out of chairs which can never be sat on, hanging in her back yard patio.

I DON'T WANT A WAR OVER MY STUFF - ok things she gave me because I liked them. I will give back but my god, my brother could have her committed and I fear that will happen as she cant believe The TRUST cost in fees and preparation. Everything should cost 1940 amounts.

So what do you guys think - say the hell with it and leave a mess or leave a clean house with little to do on it and etc. I am to sick to go through this hassle.
Anyone going through this? SICK at heart.

[Candyys03]

First, I have no idea where I'll be or what will be going on Christmas 2014. I will say yes to Skype but it won't be for sure until that time comes.

Jeanette,
I wanted to give things away a long time ago. I don't have much but I still have things in the house that are my adult kids. I wrote down who gets what but I don't think it will work. I gave a few personal things to them at Christmas. It's more meaningful. I plan to give them things on their birthday too this year.I would like to write letters to them for the future but I don't write well and I haven't gotten that far. I want to give them things and explain what it means to me or where it came from. I explained to my one daughter, the one that helps take car of me, that it will be a mess for her and or my husband to be stuck with everything and probably issues with her brother and sister but she, my other daughter and son don't want to talk about it. I don't have things of monetary value but I have a few collections-snoopy, white tigers, princess house crystal, etc.. We are also going to have a yard sale to raise money for our relay so that will help some.

I know that this was an exception that your mom was three. But try to give your things away when your mom isn't around.
The best thing I did since I've had cancer is I made a collage of pictures for each of my kids from birth to high school and framed them. They are hanging on my wall because that don't want to take them yet. I have a new list of bucket list stuff (I lost my original bucket list and I can only remember the two I did.)and a list of things I need to do. If they get done great if they don't they don't.

Hoarding is easy to do. I gave a lot of stuff to the thrift store when we moved to this house and now some of those things have a lot of value or back in style like sweater dresses and ugly Christmas sweaters. You just never know.
Maybe you have something special that would mean a lot to you and your mom, a picture of your and her, an event or trip you shared etc... personally give it to your mom it would be more meaningful to her.
Just do the best you can.

I tried to talk to my family about my funeral /memorial wishes and I know many people that already paid for it and set up everything but my family doesn't want to talk about it. I don't have the money to pay for it but I already talked to my pastor and wrote my wishes down so most everything is set. I wanted to make payments on the cremation but my husband say's don't worry about anything I'll take care of it.

Candy