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alexinlv's picture
alexinlv
Posts: 194
Joined: Jul 2010

Hello, I have been reading this board since my husband was diagnosed with stage IIIc in Dec. 09. I have found this board terrific and supportive although I've never posted! He's doing great and finished chemo in May. He is going in for his first follow up since finishing chemo. He is funny though as he will not discuss or research this terrible cancer at all! I want to know everything I can but can not really talk to him about it. So, Im wondering if anyone can help me know what to expect when he goes in on July 20 for his first appt since finishing chemo. Thank you very much. Alex

SandyL
Posts: 220
Joined: Feb 2009

That's the best advice I can give you. My husband also was diagnosed with stage III in 2008, finished his chemo txs in June 09. And since that time, he's been free and clear had yearly colonoscopy (as recommended) and aside from a few polyps, all clear! So think positively. I know what you mean about him not wanting to know the details. Men (sorry guys) tend to go into their caves when there is something going on that they don't want to hear. Cancer being a big one. Just continue to stay up on his appts. hopefully you have confidence in his drs.

Stay tuned to this board, it is the best, informative, most caring board on the net.
Sandy

alexinlv's picture
alexinlv
Posts: 194
Joined: Jul 2010

This board does seem like a wonderful family. I just want to make sure the docs are doing everything they should be doing. Can we expect a pet scan or ct scan? I assume bloood work of course. but what else? Friends and family ask me, "what's next? how and when do you know he's all clear?" and I really don't know the answer to that. How do I know it hasn't gone to his liver etc? I am worried, but don't want to bring it up to him as he hasn't wanted to discuss it all along.

khl8
Posts: 810
Joined: Nov 2009

I personally had a follow up colonoscopy about 4 months after chemo ended, I will have have one a year for as long as they tell me. I see the oncologist every 3 months for bloodwork, and I will have my yearly CT scan in August, around theone year anniversary of the end of chemo.

Kathy

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

Welcome to the place nobody wants to be but really needs to be here.

What you really need to do is talk to your oncologists about what's next. My oncs printed out a standard of care for my cancer. :)

Alex, I have a husband that doesn't want to talk about MY cancer. I talk about it all the time, but he won't engage in any type of conversation. I think I know why. Even though he hasn't said anything, I think he's worried I'm going to die. He doesn't want to know what's going to happen without me. He's scared of being alone and he isn't sure of how to act because of that. I have full faith I'm alright, although he's upbeat about things, he doesn't want to look into the future that far. I really think he's more scared than anything. Doesn't know what to expect for the future, I guess.

I wouldn't push him into talking. He will eventually. I wouldn't doubt if not soon.

Love and Hugs,

Holly

AnneCan
Posts: 3692
Joined: Oct 2009

Hi alexinlv,

Welcome to this board! I hope you find this forum very helpful + I hope you will too! I am not sure what to tell you with regards to what to expect at your husband's first post chemo appointment as I am still in treatment. Someone else will be able to help you but I just wanted to say hi.

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

Hello and welcome to the board. I'm glad you found us, as I can imagine how very hard it would be to deal with cancer in your husband, especially if he won't discuss it. That's hard for me to imagine- not discussing it. I would ask your husband if he's alright with (or let him know) that you want to write out a list of questions to ask the doctor at the follow up. I believe a scan every 6 months and bloodwork every 3-6 months would be in order for your husband. At stage III, they should be checking bloodwork, including the CEA. CEA isn't reliable for everyone, but seems to be for many. There wouldn't really be a way to know at this point if it's reliable for your husband, but if it were to start rising, that could be suspicious. I would think if it did rise above normal, they would wait another month and retest. If it's still elevated or rising, then a CT scan would be in order. I know the scare of too many CT's but, at this point in medical time, it's really the only way of knowing what's going on inside the body.
Definitely ask the doctor what plan he proposes to continue to check your husband. Putting off bloodwork and scans for too long isn't good- your husband may want that since he doesn't like to talk about it, but if something were to end up spreading, it would obviously be best to find out early and treat as soon as possible. Hopefully, that will not be the case at all, and your husband can go on with no sign of cancer.

Blessings to you,
Lisa

alexinlv's picture
alexinlv
Posts: 194
Joined: Jul 2010

I am very happy to finally post after months of getting to know you all. Thank you for the support. I feel like I could be on this board all day! I am scared and I don't know if he is. The funny thing about my husband, is generally he is a very communicative person. We have always talked about everything in the 18 years we've been together! So it is hard! His neuropathy is pretty bad, and he sleeps alot it seems. Other than that he has been ok, I'm the one who can't get this thing off my mind! Ugh!

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

Welcome to our family that keeps on growing! I am 45, and have Stage 4 cc with mets to the liver, married, with 4 kids, my family is my life, but I know how he feels sleeping all the time, the fatigue with the treatments is soooo bad. I feel the Folfox had more fatigue then the Folfiri did. Which chemo treatment will he be doing? sorry if I missed that part of the post, I didn't see it. The Folfox seems to be worse for me then the Folfiri. I've done countless treatments of Folfiri, and now I'll be doing my 10th treatment of Folfox next week. The intense feeling of numbness in the fingers and toes are most annoying. And also trying to drink or eat cold things during Folfox. I actually keep doing it though, it hurts abit, but if I'm thirsty enough, I'm still drinking the cold water or cold shake, whether it feels numb or not lol...I can't just take drinking warm the whole time....and I will eat that cold salad, no matter if it feels tingly down my throat or not, I just let it go, and do it.

Taking the laundry out from the washer and putting it in the dryer is another feat, that will numb my fingers out as well, even washing dishes, but I'll just put on rubber gloves, and it's fine, it may be abit painful, but I just endure it and do it anyway, I be darned it let me stop me from doing things I need to get done. If I can get through these treatments, anyone can! :)

Good luck with these treatments, we're here to support you in any way we can! Any questions, feel free to ask, if we know the answers, we'll be glad to help you, we're all learning and are on this journey together, so nice to meet you hun!

Hugsss!
~Donna

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

I read what you said about drinking cold water anyway, and there I was having a hot flash, at 2AM and thought I'll try it. (Had chemo yesterday) After a few sips and the cold air in the house, I completely lost my ability to breath. I was trying to breathe and pushing then smacking on my husband to awaken him, by the time he was awake I couldn't talk or make any sounds, and HE FELL BACK ASLEEP!!!
Scared the bejeevies out of me, I kept thinking they said if it happened, "You will breathe, just remember you will breathe". Finally sweet air came in, and life still existed.
No more cold water till my throat tells me it's okay, which will be sometime next week.

coloCan
Posts: 1956
Joined: Oct 2009

ASAP if you forget about the cold-water effect while on oxi and try to drink something cold.....Also, if doing oxi in winter time, room temperature may be too cold, depending on where you live and degree of heating......steve

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

Didn't think about drinking warm right after, but kinda of quit breathing almost immediately.

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

Hi, Alex.

Welcome to the board! I'm glad you've decided to start posting!

Everybody takes the cancer diagnosis in a way that's peculiar to them. Don't try to push your husband into talking to you about it. He should get to it in his own time. Just be available and listen for clues that he might want to get into a discussion.

He's a lucky man to have you with him in this journey!

*hugs*
Gail

ktlcs's picture
ktlcs
Posts: 360
Joined: Jan 2010

I too am relatively new to the board and have only just started posting. Everyone here is terrific, very caring group.

My husband was diagnosed in Oct 09, Stage IV with liver mets. He too doesn't really talk about it too much. Wants me to get all test results and relahy them to him and to deal with the Drs for him. It's OK though, I want to be there in any way I can and if it makes him feel better to have me deal with the details than that is OK. Everybody handles it differently I guess.

In any event, I know just how you feel as the spouse of someone with cancer. For me it is tough to handle I am scared all of the time, but never let him see it. I go in another room and hide if I have to. Try to stay strong (I hope I can figure out how to do that)he needs you now more than ever. Our onc keeps telling me how important it is for me to keep a positivie attitude.

K

abrub's picture
abrub
Posts: 2098
Joined: Mar 2010

Take the time to do things you enjoy, to get out a bit. Also, if you're bottling up too much, consider seeing a counselor; you have real issues, too.

I'm quick to recommend Gilda's Club, if there is one in your area. They have support groups for both patients ("Wellness Groups") and caregiver/family members. Often only one or the other may go - my husband met people in the Caregivers' group whose spouses didn't come to the Wellness Group (they met at the same time at my local Gilda's). Similarly, I met some wonderful people in Wellness whose spouses would not attend Caregivers.

Just a reminder that if you don't take care of yourself, you can't take care of us as well, and we need our loving, healthy partners/caregivers!

We can't thank you enough!

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