Previous Thread
Next Thread
Print Thread
#34983 03-06-2007 09:03 PM
Joined: Jan 2007
Posts: 735
sharlee Offline OP
"Above & Beyond" Member (500+ posts)
OP Offline
"Above & Beyond" Member (500+ posts)

Joined: Jan 2007
Posts: 735
Hi all
well I am 3 weeks (almost 4) out of surgery and as you can see by the time Having difficulty sleeping. I am still waiting to get more info and make my decison on radiation ..which you all know is not an wasy one, becasue I was only a stage I it is an up in the air thing ( for lack of a better way to say it ) I am going to Dana farber next wens for a sec opinion. I am havin a really hard time with this and I know alot of you have answered questions on another post about my decison.I guess i am here tonight or should i say this am (almost3am) because while I have a husband I love very much I am frustrated with him and feel he isnt there emotionally for me. Dont get me wrong he has been good as far as going to all my appts driving me where I want to go ,helping with our 5 kids ( well if u consider letting them do whatever and just telling them to let me sleep helping lol) not expecting me to cook or clean a whole lot. But when he does go he dosent ask questions and dosent really talk to me about it. he dose listen to me but offers really no answers or opinions. He never has been one to communicate his feelings and I am sure he is going through alot right now too , but letting me know that would help me rather than make me feel like this is no big deal.IT IS TO ME !!!!! MY life has forever been changed our life. SO today I sent him an email feeling as though it wasnt as confrontational. told him my thoughts and fear and told him I was reaching out for him and that i know that some of my fears my seem crazy but they are real to me and I need to know how he feels and what he thinks about things ex radiation. I used the reference to him that when your sno machine is broke you get right on line to your forum to find out what is wrong and how to fix it ...now your wife is broke ( as an analogy) have you tried looking online to find info? He hasnt. I asked him to write back to me as it may be easier. so when he picked me up from my meeting i asked him if he read it he said yes but didnt have time to respond cuz he had to pick me up. so we came home i cooked dinner , he was on computer . Before he went to bed I asked him if he responded, he said he didnt have time , yet he was on for over an hour looking at snow machine stuff, celebrit y gossip and also on the phone makin his plans to go on a "ride" tomorrow night which he asked me if I had minded cus of being here alone dealing with kids , i know he needs the time away so i said yes. BUT I am SOOOOO HURT right now and feel like I am doing this alone. I left him a note to wake up too that said that...You had time for your snow machine your freinds and nonsense ,but not for me after I poured my heart out and TOLD HIM STRAIGHT OUT that I need him and was callin out for help, and that if any time in our 16 years together I need him emotionally it was now. I just dont know how to do this I have been sooooo good and tried so hard not get DOWN about this and I try not to cry ( never in front of him or kids ..only day i was diag) But to feel alone in this is so hard, like what if i do need radaition I need him them , I need to know he is going to be OK and be there and not just let my home fall apart and kids do what they want and to be there on the days I am telling hi I cant do it anymore . HOW DO I GET THROUGH TO HIM ? and is it normal ? I see so many spouses and parent and sig others on here supporting each other .PLEASEEEEEE i am asking for how to do this....I know I wouldnt be able to without the help of all of you here ( my family and friends are wonderful too , but I need my husband)


Sharlee
35 year old Female Non smoker, very occasional alcohol ..Scc T1N0M0,partial glossectomy and left neck disection ,2/9/07 No rad deemed ness. 4/16 tonsillectomy ..Trimengenial Neuralga due to surgery
#34984 03-07-2007 01:36 AM
Joined: Nov 2002
Posts: 541
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: Nov 2002
Posts: 541
Sharlee, your long post brings my memory back to where I was 5 years ago.Like you, I am married and I can tell you that without my husband's support, I would not have been alive. When I was diagnosed, I gave a clear message to my husband and my 2 sons ( 13 and 17 at that time) that we would fight the battle together and I would try to keep their life as usual.I didn't want them to get worried about me and didn't want to upset their daily routine. So I went to the hospital for treatment alone and even when my husband offered help, I refused because he had too much to take care of already. He didn't talk much about my illness or look for information about my cancer, either.He couldn't even tell others exactly the type of cancer I had. I didn't feel frustrated about it because he isn't a professional and I had doctors to count on. Men are different from women and very often they hide their feelings and they may not know how to react when something traumatic happens. My husband did suppress his emotions a lot when I was in a critical situation.He appeared as his wife was just suffering from a severe cold and looked very calm. I only learnt it later from my maid that he shed his tears several times at home when I was in hospital.
You should have faith in your husband since you have been together for so many years. He may be under great stress now and really doesn't know what to do to help you. Try to open your mind and tell your husband how you want him to help you. My ways of coping with the battle may not sound right to you as we have different personality. Hope others who go through similar situation may give you more insight.

Karen


Karen stage 4B (T3N3M0)tonsil cancer diagnosed in 9/2001.Concurrent chemo-radiation treatment ( XRT x 48 /Cisplatin x 4) ended in 12/01. Have been in remission ever since.
#34985 03-07-2007 09:33 AM
Joined: Nov 2002
Posts: 3,552
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Nov 2002
Posts: 3,552
Sharlee,
Men, in general, stuff their feelings. It is part of our childhhod conditioning (right or wrong).

Maybe he needs to detach emotionally so that he doesn't add more to your fears.

He might also struggle with his own sense of immortality (especially since this is so close to home). I had close friends who had to distance themselves while I was going through treatment.

Oftentime caregivers come here and NOT the patients because they simply don't WANT to know - that can work the other way as well.

My wife had a nervous breakdown after I had completed treatment. She never once went on the internet or did research - I was my own advocate and did all of that stuff - hell, I STILL do all of that stuff but mainly for others now. But without her support and tolerance of my anger, I wouldn't have lived through it. She was a great note taker though and drove me to 95% of all of my appointments (subsequently sacrificng her busines with a personal bankruptcy).

As we all respond to treatment differently we also respond to trauma and crisis differently as well. Don't make assumptions that he is not emotionally involved. It just may not be manifesting itself to your expectations (you have to do a "reality check" on that).

Use "I" statements and not "you", "would", "should" or "could" if you discuss it.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
#34986 03-07-2007 04:53 PM
Joined: Apr 2006
Posts: 378
"Above & Beyond" Member (300+ posts)
Offline
"Above & Beyond" Member (300+ posts)

Joined: Apr 2006
Posts: 378
Hi Sharlee,

Yes I think your feelings are normal and so are his. I can remember writing a similar note to Jack at one point - same issues, don't leave me out, tell me how you're feeling - but from a caregiver perspective. And I also remember that it didn't work.

My style of coping is to talk to anyone who will listen, and even some that won't. I'm definitely into pouring my heart out. Jack is more private and it's harder for him to share his feelings. But I've learned this year that doesn't mean he doesn't have them.

I've done a lot of work on anger management since this started and counseling really helped that. Like Gary said using "I need" statements rather than "you should" is the best approach. It makes it less confrontational because we're the only ones who can really say how we feel. Also, I had to learn to listen. For those of us who like to talk, hearing what someone else is saying can be a real challenge. I was always thinking ahead to my next comeback and missing his points.

We have been married 26 years and just renewed our vows. We've worked hard to find our new normal and to keep our connection to each other as a couple. In the beginning everything was just one big raw nerve. You're in shock with the diagnosis and the stress of the treatments - and that's before you add second guessing everything you're doing. Mostly we're all hoping we- or the ones we love - actually survive all this crap.

I guess what I'm saying is that you are both going to have to find what works for you in this situation and it may not be the same coping strategies. I can tell you I have never felt more helpless and alone than in the beginning of this when we were still figuring it all out. I didn't want to add to Jack's fears, I was trying to keep it all together because I thought that was expected, and there was this terrible sense that I had not one clue what to do here. I wanted to make it all better, and of course I couldn't.

There's no good role to play here, what you are going through as a patient is horrific. You do need all the support you are describing and you do need your husband. The thing is you may actually have him. He may be giving all that he is capable of at this moment. He may be so scared that he doesn't know what to do. So the snow blower etc. could be diversions, just something to push the pain away.

You absolutely need to talk about your feelings. Who do you confide in normally? Have you considered talking to a counselor about what you are going through? What were your patterns of communication with your husband before the cancer? Did he share his feelings then?

Best of luck at Dana faber next week and you hang in there.

Regards JoAnne


JoAnne - Caregiver to husband, cancer rt. tonsil, mets to soft palate, BOT, 7 lymph nodes - T3N2BM0, stage 4. Robotic assisted surgery, radical neck dissection 2/06; 30 IMTX treatments and 4 cycles of cisplatin completed June 06.
#34987 03-07-2007 10:09 PM
Joined: Nov 2006
Posts: 2,671
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Nov 2006
Posts: 2,671
Sharlee - It seems like there are those men who like to fix things and when they can't fix it, they don't know what to do. You can fix a snow blower but how do you "fix" a person when all the popular "fix-it" people are telling us that they only person you can fix or change is yourself? Could be that your husband is afraid of what he'll find out in his research. As a CG to my son, I found it very difficult to look up some things because I was so afraid of finding out. We all respond differently to situations - it doesn't mean that the feelings or the love aren't there. I was married for 20 years and at one point in our marriage, I asked my husband why he didn't say he loved me. He responded with "I told you the day we were married, don't you remember?" I did find out tho' in other ways that the love was there. As others have noted, in communicating, it is better to use "feeling" words ("I feel that. . ") instead of the accusatory "you". And it is important to have someone to talk to in person who will be objective and can help sort out your feelings. Maybe a counselor or psychologist associated with the Cancer Center?


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)




Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,166
Posts196,921
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5