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scared and hurt

LOUSWIFT
Posts: 372
Joined: Aug 2006

Tomorrow I go for a pet scan to see if after four years my rectal cancer has returned. My CEA went from 2.2 to 5.8. I have had to wait just over a week for the exam and in that time I have lost five pounds. I know my wife says its just stress and maybe she is right. Tomorrow will tell us nothing, we won't know until the middle of next week. I will be going alone my wife has a graduation with one of her nieces about an hour away from me. I'm not surprised my wife has a large family and she has always put them ahead of me. Still this could be a pivital moment in my life and I will be there alone. My Oncologist didn't even bother to call me about the CEA increase. I found out when a scheduler called and said we need to get you in for a PET scan and I asked why? Feeling pretty alone and plenty scared.

chicoturner's picture
chicoturner
Posts: 285
Joined: Apr 2009

Hi, I can see that you are at a very low point right now, but do know that as friends on this site read your story, you will not be alone. You wife may be in a bit of denial and going on like it is no big deal might be how she is dealing with her fear. It is unfortunate that your onc did not talk with you personally, but, for this moment, put that behind you and go into this scan with confidence. I am too am waiting for scan results and know how hard it is to wait. We want to know, but, part of us is to scared to know. You will be in my prayers. Jean

geotina's picture
geotina
Posts: 2120
Joined: Oct 2009

I wish you nothing but good news on your upcoming scans. I am sorry though that you will have no one with you to lean on. I've always gone to all doctor appointments, tests and scans with George, it is wierd but it is like I made his disease my disease also being the one that does the research on different therapies that could (hopefully) be available to him. Like the last doctor visit I was mentioning different radiation therapies and the doctor very patiently explained to me why they are not available to George at this point in time, well, George really had no clue what I was talking about because the PA started talking in "medical talk" and I knew exactly what she was saying but he sure was happy that I was asking and asked me how the heck I knew about this stuff. George kind of goes with the flow and if the doctor told him to go stand in the street and touch his toes he would do it, on the other hand, I would question why. The only time he went alone was to chemo and that was only after he told me it was not necessary for me to take off work and go with him. He was very lucky that he handled chemo very well.

Best wishes - Tina

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

Hi,

I'm sorry that you're feeling alone in this. I've gone to all of my scans by myself (I've had so many, I've lost count)& I am also getting a scan done tomorrow- wow- there are quite a few of us on the board getting scans done within the next couple of days!
I guess it almost shocks me to realize that there are others that have spouses/significant others that actually go to these things with them. I'm the one with all the knowledge on my cancer and treatments- my hubby really can't deal with it emotionally, so I go to everything myself and often try to soften any bad news I've had for his sake (ok- I know something's wrong with that picture, but that's the way it is- I can just deal with things better than he can) BUT- I can definitely relate to your feelings of wishing your wife were going with you- everyone wants that emotional support and comfort. You need to tell her in a non accusatory way (so that she won't get defensive and will be more likely to see your side) that this is really important to you. As you said, though, you won't get your results at the time of your scan, so it seems that your wife wouldn't be missing out on you finding out the results. Hopefully she will be able to be with you next week when you get your results. If she's not planning on doing so, then tell her that it's really important to you to have her there with you!
As you may have heard before, CEA is not a reliable indicator for everyone and it can sometimes go up for other reasons. I will pray right now that the slightly rising CEA is not indicative of any increase in cancer activity.
You take care and hang in there!

Lisa

taraHK
Posts: 1961
Joined: Aug 2003

I'm on the other side of the world, but will be with you in spirit - I promise.

I'll be having a PET too -- for the same reason -- CEA rose to around 6. Like you, I found out when I received a call from the hospital telling me to show up for a scan! Would have appreciated hearing it first from my ONC.

OK - that 5 pounds you lost - I think you sent it to me!

I will be thinking of you - sending thoughts prayers and all good wishes your way. I'm looking forward to celebrating good news with you.

Tara

dmdwins
Posts: 453
Joined: Aug 2008

Seems like many of us will be having scans this week and next and most of us have that stupid Scanxiety. I too have lost weight this week and I KNOW that it is from being anxious and not eating. Yours probably is too.

Wishing you great results along with everyone else. Please let us know and you are never alone as long as you have your CNS family.

Smiles,
Dawn

PhillieG's picture
PhillieG
Posts: 4907
Joined: May 2005

I'm very surprised that the scheduler told you about your CEA. At Sloan, ONLY my Oncologist is allowed to give me those numbers, and that has to be in person, not over the phone, period! I agree with others who posted that CEA is not a very accurate marker for cancer so I can understand why you were not called by your Onc. If it shot up 2000 points then there might be reason for concern.
As far as your wife goes, does she usually go with you to appointments? I think that since this is a scan that has you rattled, her support would be a good thing for you. Possibly she feels very confident that all is well but I think it would be a good idea to let her know how you feel.

It must be Scan Week. I just had a CT scan yesterday. Number who-the-hell-knows. I will likely get the results myself, we have kids that still need help getting off to school. My wife wants to go but I'm fine with going alone. I leave the house very early and have done this so many times it's not a big deal. There have been times I wish she was there but our circumstances are what they are and if I wanted her there I know she would be there.

Best of luck to you, try to stay busy if you can to keep your mind off it.
-phil

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

Hey Lou

The ladies have got you covered all the way - all of the make good points. Oh, and I just noticed Phil's wise post as well.

It's an individual thing I think - some folks can handle it and others cannot. I'm similar to Lisa - I did all of the homework and research and wrote up my questions, and I did my CTs, PETS, and bone scans, by myself. My wife had to work, so for her to take off, was a big deal and we lost money, 'cause she was not paid for that time.

And I figured, I can handle this and she can stay at work and draw less trouble, and I'll see her at the house. We always approached it as a business. I did alot of chemo treatments by myself, but sometimes she wanted to be there - I resisted, but if she wanted to be there, I said OK - I kept myself entertained when I was there myself, by just talking my fool head off to whomever would listen - some of those chemo parties were a blast - we're all hooked up with poison flowing in our veins, and we're exchanging life stories and laughing - the time just flew by.

And I tried to do my onc appts alone too, but she wanted to be there for those, and she has been. She's afraid I would "color the picture" and she would not get the full scoop - smart lady:)

I can feel your hurt in your words though - this does not sound like the first time this has happened to you. Hopefully, you can talk to her, as everyone said, and explain what is important to you, and she'll respond differently.

I used to do all of it by myself early on - in the end, I did my tests alone, and she would join me for the Result Party - and I was ok with this...I grew up hard, so I did not feel abandoned. We just had to do what we each could do and we both understood. I think if I had asked her to be there, she would have - but it was a financial decision and I figured she could not help me at the scans anyway - sometimes in the battle, "we have to walk alone." As long, as she's there to walk some of the way with you, is what we all hope for. I hope that your wife can see this too - I do understand your feeling of loneliness and isolation. But, remember, it may be nothing at all - tie a knot in it and hang on a few days - maybe you guys can go hear the results and then go to lunch or an early dinner, and make a nice time out of it:)

We'll sit in the "waiting room" with you, Lou - we'll be here when you come out - I do hope that your number indicates nothing - if it is, then you are way out on front of it, and can deal with it quickly.

-Craig

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

I wish you nothing but the best on your scans, I get my scans next week! Yikes! But, I feel so sorry that you want your wife to be with you, and she has something else to do. Maybe you could change the date even where she can go with you? Does she usually always go with you to your appointments??

My husband doesn't let me do anything alone. He is worried about me driving 2 hours after tests and chemo, in case I'm on alot of meds, so he has always been with me, he drives every other week to my chemo, and since his dad lives in Columbus as well, he visits him while I get my chemo, and then comes back with some food and drinks. He had to fill out FMLA papers so that he can't get fired from his job as well.

But know, I also am with you in spirit, and will be sending you positive healthy vibes to you, and we'll all be thinking about you..Let us know about the scans, and how they came out. I hope things work out differently, and you don't go alone.

Hugsss!
~Donna

Paula G.'s picture
Paula G.
Posts: 596
Joined: Apr 2009

Good luck Lou. My husband gets his scans done the day before we see the Onc. I don't go with him for the scan but I do go with him to see the Onc. I am the one with questions, questions and more questions. I guess it is my nature. I hope it is nothing! Best of luck and inform us how it goes. Paula

LOUSWIFT
Posts: 372
Joined: Aug 2006

Well the Pet/ct scans are done. Although the CT scan machine broke down when it was my turn so they sent me to another branch of the hospital and got to go to the bottom of the line and drink some more contrast Yummy!:( I joined this site because not only have the people here been through the emotions; treatments; success and disappointments but because you guys care about others. Thank You! I wish that we all someday may beat cancer and the only time we need to talk is about our good health; friends, and family. Take Care!

taraHK
Posts: 1961
Joined: Aug 2003

I'm glad the scans are over. Keeping all my fingers and toes crossed now that the results are everything we would hope for. You are so right about this site -- it gives all new definition to the word 'family'.

Tara

Kerry S's picture
Kerry S
Posts: 607
Joined: Dec 2009

Cancer sucks so, break the rules, forgive quickly, kiss slowly, love truly, laugh uncontrollably, and never regret anything that made you smile!

Annabelle41415's picture
Annabelle41415
Posts: 6549
Joined: Feb 2009

So sorry you are going through this. Hoping that all will be fine. It's hard going through this journey especially when there is so much testing to be done. Rest assured that you have a large family here supporting and encouraging you in every way.

Kim

Brenda3.16
Posts: 211
Joined: May 2009

Lou,

I feel that my husband is not always "emotionally" able to able handle going to all of my scans. My mom and sister always want to go and make it a shopping and eating out day. My husband usually goes for big trips to NY or whatever large facility I go to. My mom and sister are more in tune to things. At times it does upset me about my husband, but I try not to obsess over it. He didn't go to one scan at Sloan in NY because it was the first day of bear season. It ended up being fun driving in with my mother. We had never driven in alone before. I praying for good results for everyone with scans now.

Brenda

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

I'm sorry you're feeling alone and scared right now. And people can tell you all kinds of things, but if you want your wife there, you're still going to feel alone and scared if she's not. The only thing I can say is that people handle things and react to this mess in so many different ways. Once upon a time I posted here about being disappointed with the way my kids and hubby reacted to my cancer. Since then it's been a slow reveal of how much it affected each of them. My husband will burst into tears now (2 1/2 years out)if something reminds him that he could have/still could lose me. And my kids will toss in comments during "casual" conversations, and I realize that they, too, were in shock before and trying to protect me.

I guess what I'm trying to say is that even if it seems your wife is putting other things before being there for you, she may still be feeling the pain of your cancer in her own way. Still, I'm sorry if you have to go alone.

*comforting hugs*
Gail

Eltina21's picture
Eltina21
Posts: 174
Joined: May 2010

Good Morning,
I pray that all is well. Being a cancer patient myself, I know how you feel, however I also know that family and friends truly care about us. Hold on to your faith and you are never alone. Loved ones are always with us, even when they are not physically present. Take care and stay positive.
Peace and Blessings,
Karen

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