Advice for a husband?

Texas1968

Hello,

I've never really used an online forum before, but I'm hoping for some advice.  My wife of ~6 months was diagnosed with breast cancer last week and this morning we scheduled a bilateral mastectomy with simultaneous reconstruction for next month.  This was her decision and I support her completely.  She is remaining very upbeat and positive, but I am a wreck (and trying to hide it).  I'm doing my best to be everything I need to be for her and the kids, but I can't eat or sleep and haven't been back to the office since last week.  If someone hypothetically told me this was going to happen in advance, I would have been sure that our states of mind would be exactly the opposite. I guess I am feeling disappointed in myself. I am confident that we are in good hands medically-speaking, and we are getting good advice and support all around but our extended families are not close to us geographically. Reading back through this, I realize I probably just sound like I am complaining, but has anyone else had a similar experience?  How did you cope with the range of emotions in the first few weeks after a loved one's diagnosis, but before surgery?

Thanks

CLC

I don't have a great deal of advice for you, but I didn't want your thread to get lost before other caregivers and husbands came along to answer...so I am "bumping" your thread...(posting so that it shows at the top of the active topics list).

If there is any advice I can give...it is to listen and let her know you love her...  But I have not been on the caregiving end of breast cancer and I have found that my dh and best friend held up okay.  (And did an awesome job of getting me through the diagnosis and surgery).  I know that there are many folks here that will have excellent advice for you...

I wish you all the best as you and your family go through this journey with your wife.

angelsister

Hi texas, i'm so sorry that you and your wife are going through this. It stinks! To be honest it sounds like you are doing great. Helping out, coming here looking for info...i think she would appreciate that! She may be upbeat because she doesn't want to worry you more? When my sister was first diagnosed zshe didn't want to talk much about how she was feeling. As she started to accept what had happened she appreciated being able to talk about being frightened, tired, sick, in pain or uncomfortable etc. And all i had to do was listen and not make her feel bad for letting it out. Some times we cried together but what was most difficult for her to deal with was our other sister who wanted andwers she just didn't have and reassurance for herself, often she wasn't up to that so she would keep things from her. No real advice there except love her and listen to her. Best wishes x

ALittleBitBritish

Hi texas1968,

 

This is a hell of rollercoast ride for sure. You have come to a great place for help.

I found pretty early on a website called 'Y-Me' it has a 24/7 telephone helpline, it is wonderful, all are cancer survivors that answer the phone, all highly trained. They also offer a match program - for both ladies and their husbands who could benefit from talking to a husband who has been there and came through this. It might help you.

 

You need to express your emotions. Some couples go to support groups together, it may help to meet with others in a similar situation.

 

Sending best wishes to you and your wife. 

 

Take care,

Alison 

Dixiemine30

Texas -- Feel what you feel and be honest with your wife about it.  I can assure you she is being strong for everyone around her but on the inside she is terrified.  Let her know it's okay to not be okay with you....she needs an outlet.  You are off to a good start with this forum....this place saved me.  Good luck to you both!!

DoninRO

Texas - I feel your pain . . . I'm going through the same with my wife who was just diagnosed last month.  I can't even believe I'm writing this, but it gets better.  Like you, I was a wreck at first - couldn't sleep, could barely concentrate at work, no interest in eating or any of my normal activities.  What got me through was reaching out for and accepting help everywhere I could find it; mostly this took the form of telling everyone close to me what we are going through.  I'm not usually open with my emotions, but man have I learned how to be!  Being able to talk through my sorrow, my fears, my anger and my anxiety was exactly what I needed.  I went to see a therapist too - something I've never done before but which was very helpful (and it was nice to know she was there if I ever needed a prescription for anything!).  I did A LOT of reading (survivor stories really lifted my spirits), a lot of praying and lot of connecting with others through this site and through my local Gilda's Club.  Rigorous exercise helped at times too!

I can't say exactly what will work for you, but I DO know from personal experience that it gets better.  It didn't seem like it would at the time, but it does.

I wish both you and your wife all the best as you go through this together.

riceandbean

@Texas:  Wow.  We are all brothers in arms here.  My wife was dx'd during the Christmas holiday, had a radical mx on jan 6, 2012 and now we have just finished up our second chemo tx.  We have a 13 month old son, who is our pride and joy (keeps us laughing no matter what)!  I think that is the key.  This situation is so absurd that all you can do at times is laugh at  the circumstances, keep a positive outlook on the future and listen to your wife.

Its a burden and a sacrifice to make, but then it seems thats what we have been called for.  I am up for it....what I signed up for when I made my vows.

If I can be of any help or support please let me know. 

apple

i suppose the first weeks and months are just as hard on the husbands as the wives.. I remember stumbling upon my husband.. his head in his hands just sobbing alone behind his shop.. it about broke my heart... He was much sadder than I've ever been.

there is a new normal and it all gets easier to bear as time passes.

Texas1968

Thank you all for your words of support!  I didn't really know what to expect, but I am finding that just reading through all of your responses is more uplifting and helpful than I thought it would be.  Is the normal process to reply to each individually, or do I put it at the bottom like this?

ALittleBitBritish & hillck, as far as the support groups you mentioned, there is some informtion about a group called Reach for Recovery in the "Preparing for Your Mastectomy" materials we got from the surgeon.  This sounds promising.  We are in a big city, so there should be plently of resources available.

DoninRO, I think I could benefit from seeing a therapist, and like you I have never done that before.  I might do it on my own, or with my wife.

Thanks to everyone for the encouragement and the reminders that things will hopefully get better, or at least more normal.  Also, for the reassurances that the way I'm dealing with this so far is not unusual.

dlb823

Hi, Texas ~ There's no right or wrong way to respond to what you're going through, and there's no right or wrong way to respond here.  Whatever works for you!

In addition to the excellent advice you've already gotten, I wanted to suggest a book called Breast Cancer Husband, by Marc Silver.  I've heard great things about it -- mostly that it's presented in terms to which guys can relate, including a lot of sports terminology.  Here's a link where you can check it out:  http://www.breastcancerhusband.com/

If you and/or your wife decide to see a therapist, something we learned is that it's important to choose one who is totally familiar with breast cancer treatment.  As a psychologist @ UCLA pointed out to us when I remarked that I had friends who had used good counselors for other concerns, now is not the time to try to be explaining to someone why you or your wife are upset or worried about something involving her tx. You need a therapist who is way ahead of you in knowing everything about bc dx & tx, so that he/she can give you appropriate, workable strategies for what you're going through.

The very fact that you've reached out here tells me you're an exceptional guy, and that your wife is very fortunate to have you to in her life.   (((Hugs))), and please keep us posted on your wife's situation.     Deanna 

Texas1968

Thank you dlb823!  I just ordered the book from Amazon.  Also, thanks for the advice about counselors/therapists who specialize in breast cancer treatment.

peggy_j

texas, you've gotten great advice and the fact that you are reaching out is a good sign. In addition to all the support you'll give your wife, I think it's important for you to take care of yourself. My advice would be to set up your support options before you think you need them; that way if you're having a low day, you'll have support in place. i.e. even if you don't want to go to a caregiver's support group, force yourself to go on a day you're feeling fine, to get over that possibly awkward hurdle.  At luck would have it, when I was going through Tx my DH's three closest confidants (including his sister) were all going through crises themselves, so he toughed things on his on own. He was mostly good but had some bad days.

In practical terms, don't forget to do some "distraction therapy" to get away and clear your head. And stay away from sad movies, seriously. My husband watched that Robert Duvall movie (where he plans his own funeral). I refused to see it so my DH watched it on Sat afternoon and was a basketcase for the rest of the weekend.  So I agree that things will get better but you'll also have some ups and downs and you might find yourself blindsided by emotions as unexpected times.  It's normal and you need to take time to "process" them. Don't feel bad about it. As my counselor said, "no feelings about feelings." Best of luck to you and your wife.

Layla2525

I got a bmx with TE and my fiance is trying to help but is clueless. He wanted a support group to tell him what to do but we could nt  work one into our schedule. He now leaves for work at 5 and returns at 10 as if he doesnt wanna deal with it all. at first he drank too much alchohol to try and cope that way,then he did ok for awhile saying what ever I decided he would support. I would have liked it if he had put things on a lower shelf and had some frozen home cooked meals I could warm up when he was away. I cant reach too high without tearing stitches and you stay too doped up after with pain meds. I felt so alone,I needed a lot of extra hugs and back rubs were good but I would ask first,not every woman is the same or responds the same. She may feel angry, I just felt sad and very alone and like he was gonna leave me cause I was a smashed up vehicle and needed to be towed away. Martina McBride's song from aug 2011 sums it up "I'm Gonna Love You Through It" very soulful country song about breast cancer families. Hope this helps,best wishes for healing to you all physically and emotionally.

Hattie

reading breast cancer husband helped my husband but just realize that the treatments and outcomes in that book are old and outdated.  my husband wanted to fix everything and it was hard that he could not. however he did amazing things like totally clean and disinfect and cheer up our bedroom before chemo.  and just listen and hold me. that was major.  and listen to me ball and go to the dark side and still say "we have each other.. i am here.  life is is groovy."  he had some guy friends to confide in and let it rip--hope you have those good buddies too. i really believe it is harder to be the support person--we women have to just do it but you have to stand by and not be able to make it all better.  i have to say, this was the worst that has happened to us so far but it really has made us so much closer and stronger.  hang in there and take care and message me if you want to talk to my husband.  you develop skills thru this (courage) and we can teach other how to carry on and live on.

take care,

hattie 

tiedyemom

Gosh what a great guy you are to come here looking for advice and support!  Keep checking this thread....I'm going to have my guy read it and post, since he is in your shoes and is absolutely doing everything "right".  He has truly been what has gotten me through each and every moment of this roller coaster ride.  You men and your support mean so much more than you realize.  Sounds like you are doing great already, but I will have him post his thoughts shortly as you specifically asked for input from someone who could relate to where you're coming from.

His name is Ron and he will post from my "tiedyemom" avitar. 

bak94

You have gotton great advice! I agree with Peggy in saying that you need to take care of yourself also. Caregivers need a break too! I would have to tell my husband to go fishing or go do something he enjoys and he would say he was too busy, but I knew he needed to get out to clear his mind. I would tell him the other things could wait and he would finally go. He would come back so much more relaxed and ready to continue on. So if your wife is ok with it, remember to do something for yourself once in awhile, it will put you in a better mental place to deal with everything. 

tiedyemom

Hello, from tiedyemom's man. Welll you have kinda nailed it . We all go through the emotions, they go through the pain and emotion, imagine williningly putting poison in your body which makes them feel like shit. I feel it my duty to help and support her any way I can . I felt helpless but try and keep the end in sight . There are times when I feel like what have I signed up for but, when one is in love you do what you have to do if it means putting up a false front to make the other feel secure andcomfotabe then that is what you do. Sounds easy but it is not. We are now on month 5 1/2 and another month of chemo to go before any surgery.The only advice I can give is if you were strong before this happened then you will be stronger as it goes and will become even closer. imho . This has brought us closer and able to talk about almost everything . Totally normal to have those kind of thoughts, we all get a little scared or amprehensive of the unknown and with cancer it is , it can be all good one moment and then it can spring its ugly head up again, just take it day by day or hour by hour and find something that makes ou both happy and if that happens to be a mai tai then so be it , but at leaset speaking out means you are concerned on both ends. It can be hard on both , dont get me wrong. For me it ment getting a little stronger and trying to do what I could from diet, to rest, and to helping with the day to day life that she, mine, can't do every day. Just take it one day at a time and they will all roll together and become the end/start to a new begining .

Momine

Whoever talked about laughing, I agree. My husband laughs with me and it helps me hold on to the person I am when assaulted by medical treatment. He treats me like the wife he loves, even when I look like death warmed over and have no hair, tells me I am beautiful and that he loves me. It helps, it really does. You don't have to do anything heroic and you can't make it go away, but you can hold on to you are, love her and hold on to who she is. Also, don't be afraid t tell her you are scared. `it would be strange if you weren't and she may need to tell you how scared she is too.

Texas1968

I've read every post in this thread about 30 times and I can't express my gratitude enough for all of you that have taken the time and put in the thought to reply to me.  There is no doubt that it is helping me.  A question: Over the last few days we have had several people ask us why we are waiting so long for surgery (it's scheduled in 3 weeks).  When we scheduled it, the date was simply my wife's preference and the surgeon didn't convey any urgency about the schedule.  We didn't have the full Immunohistochemical report at the time, just the diagnoses of Infiltrating Ductal Carcinoma in two sites.  Now we have the addendum that indicates estrogen receptors positive w/strong intensity, progesterone receptors positive with strong intensity, HER2 overexpression negative, and Ki-67 index high (50%-55%).  Obviously, we have a message in to the surgeon this morning to follow up, but I thought i would ask here in the meantime whether anyone here thinks the high Ki-67 index creates more urgency around the date of surgery.

Thanks again. I plan to reply to everyone when I have more time tonight.

Momine

3 months does seem like a long wait. Have you met with an oncologist yet?

Texas1968

Oops -  3 weeks (not 3 months).  Thanks!  I will edit the question if it lets me.

Texas1968

We met with two surgeons, one of which we were referred to by the oncologist we want to use. My wife was much more comfortable with the surgeon the oncologist's office recommended, so she is planning to use her.  We've been told by both surgeons we consulted with that the oncologist isn't involved until after surgery.  Are we getting bad advice?

37antiques

No, that is good advice.  The onc can't treat until the surgery is healed, the wait can be hard, but you will get through it.  They won't know the tumor's personality until after surgery, so they can't treat it, and you don't want to be treated with an open wound, let it heal.  Then you will have a treatment plan in place and things will be easier to handle.  Lots of humor, don't lose your daily life, it can be very easy to get lost in cancer.  Take it easy on yourself, this was beyond your control.  Support your wife as you have been and ask any questions at the doctor's she may have forgotten.  Take a ride or a walk together and be cancer free for a little while whenever you can.

((hugs))

CoolBreeze

Although it feels like it to us, breast cancer is not a medical emergency and you can wait a few weeks for surgery.  In fact, I recommend it if possible since it does help mentally to prepare (although that last week can feel like torture).  

If you have time, take a weekend getaway before the surgery because life will get pretty busy afterwards, especially if chemo and radiation is involved.  Chemo usually starts a month after surgery.

My husband has been wonderful.  Mostly, what he's done for me is take care of household chores that I used to do. I've had several complications and disease progression that I'm sure your wife wont' experience, but I'm so glad he's helped, and without complaint.   He grocery shops, he sometimes cooks (or brings in take-out) and he cleans (although I still have to tell him what to clean, he doesnt' see dirt.).  He does most of the driving when our son needs to go somewhere now too, and he's taken a lot of time off work to care for me at times I needed it - right out of the hospital usually.

I didn't need him to hover though, and he hasn't. As soon as I can do something for myself, he lets me.   I've been doing chemo for a couple of years now and he's only gone with me once - to the first one.  Once we knew it was a non-event, he has stayed home and now I consider that my quiet time where I can read uninterrupted.  But, I see couples there together every chemo and sometiems they go out to eat afterwards so if that is their thing, and will be yours, than good for you.

Every woman is different and you know your wife better than anybody so take your cues from her. I am Stage IV and of course, that is a very frightening place to be but my husband is right along with me and so we are managing.  I know I couldn't do it without his help and I know your wife will feel the same way about you.

SheChirple

I just want to say never forget.  When she is having a good day, laughing, seemingly happy, doing all her normal things, cancer is still ont he back of her mind.  Never forget that. Touch her shoulder, tell her you love her, hold her hand.

Just last night, when I took my daily nightime meds, including my Tamoxifen, I mentioned to my husband that just taking that medicine is torture. He didn't get it, at first.  I had to explain.

 I'm not having any side effects, and the mastectomy is behind me. I am cancer free at this point in time.  I am in the process of reconstruction and that body image is an everyday reminder.  But, somehow, going into the bathroom every night taking that medicine is a daily reminder that it may come back some day. That is torture that I will not be able to put behind me for at least 5 years.

Kelloggs

Texas - I'm assuming by now your wife has had surgery and has a game plan in place.  Bless you for being so supportive and proactive for her.  You mentioned in the beginning that you have only been married for 6 months.  My husband and I had only been married 5 months when I was diagnosed.  We still haven't had our first anniversary and we've spent the year filled with surgery, more surgery, chemo, scans...and probably radiation and Tamoxifen to come.  I was diagnosed stage IV from the beginning also and it seemed we never got any good news. 

My husband was right by my side for everything and has been my rock.  I know this is hard on him as well and it breaks my heart.  I used to get mad in the beginning when people told me that God put us together so he could help me through this.  That is not why I want someone to be in my life. But in retrospect I believe it may be true and I am so grateful for him!  You are doing everything right....keep up the good work and remember, you are allowed to have feelings and breakdowns too, help each other through it.

Good luck to you both...HUGS

Blessings2011

Texas1968  - you rock! You took the time to get out of your comfort zone, and came here. You got some great answers, and just remember, we are all here for you AND your wife.

As a retired counselor, I'm very biased.  I always recommend counseling. It's just too hard to keep everything inside your head and try to appear "normal" on the outside. If not personal counseling/therapy, then a support group for sure. I'm sure you have discovered the Roller Coaster Of Emotions.

My DH was my biggest advocate and supporter. A year earlier, he'd been dx'd with severe kidney disease. We had to make a lot of changes to our lifestyle. When I got my BC dx (which, BTW, was very similar to your wife's) my husband reminded me that we are a team, and with God, nothing can defeat us.

He has been to every pre-op and post-op appointment, sat with me for hours as I looked at pictures of mastectomies and reconstructions online, and generally became an expert at things he never thought he'd need to know about.

Years ago, he would have been SO angry that he could not fix this! Now he understands that he can't, but we can both do the best we can with what's in our control.

I was dx'd in September, but didn't have surgery until December. At home, he was my nurse, my valet, my hairdresser, my chauffeur, my chef, and my cheerleader. He took charge of emptying and logging in my drains, and dispensing and logging in my pain meds.

When I cried, he'd just sit on my bed (we rented a hospital bed for home) and just patted my leg. It helped to know he was there for me.

In a very short time, I was up and about. He was amazed that I gained such independence so quickly. He allowed me time to heal in my own way, and understands that my stamina is not what it used to be.

Now I am done with fills, and am awaiting my exchange surgery in late summer or early fall. Throughout it all, he has repeatedly told me how beautiful I am, and how much he loves my body. He's not afraid to touch the foobs (fake boobs) and is completely supportive of the implant choices I've made.

Wishing you and your wife and your family all the best as you go through this journey.

RobbG

Hey sir, 

Thank you for sharing this.  I have been looking for a place that has a good forum for husbands.  My wife and I will celebrate our second wedding anniversary next week.  She was diagnosed last Thursday.  We have little information so far, and that is killing me.  She has been given the options for treatment and is leaning toward a bilateral mastectomy with reconstruction.  She will be 40 at the end of May and we already scheduled a trip for her birthday, so we are waiting until we come back for surgery.  Because of her age and her family history, she was uncomfortable with just a lumpectomy.  I can't say I understand the decision, but its not mine to make and I stand by whatever she decides.  I'm more of a "Lets get this thing out of you now" kindof guy, but thats just my way of dealing.  I hate going through this, and I hate that anyone has to.  But if we have to do this, lets all do it together.  I'm not a techy guy, but I have always enjoyed forums and found it a great way to share experiences.  Please keep in touch and keep me updated.

 When we were waiting for the core biopsy results I started researching a Husbands role in this whole thing. Looking for advice, books to read, sites, etc.  The first thing I found was a statistic, 25% of men leave their wife/girlfriend after receiving this news.  The article pointed out that while that is sad and shocking, 75% of men stay. That is what we are. THE SEVENTY-FIVE PERCENT.  And I will remind myself of that everyday.

Lifeonitsside

So nice to hear a guy's side of things. I had only been dating my boyfriend for just over four months when I got diagnosed. I told him I understood if he wasn't up for this as we'd been kind of casual and he didn't sign up for this. But he's still here, now going on seven months. And he's been to the doctor's appointments with me and been at my side throughout and been amazing.



But it just hit me the other day that, as much as he's there for me, what can I do for him? He must be struggling as well so it's nice to hear from you and what you're thinking. Thanks so much for sharing and bringing that other point of view to us.



Best of luck to you and your wife. Yay for being the 75%.

RobbG

I'm still learning the difference between what I want and what I need, so I might not be of much help. My wife told me yesterday to "lighten the heck up". I guess over the last week I've had the doom and gloom look on my face. I took it personal at first, "how could I be cheerful right now with so much up in the air". Then I realized, she needed me to " lighten the heck up". She can't be cheery for both of us and I wasn't pulling my share. I guess what we really need is honesty and some direction at times. I feel like " I'm I doing the right things", and I know that is going to get more involved as we start our treatments. I would rather hear "lighten up" than to not be helping. Be honest when you need us and when you would rather us leave you alone. We appreciate that more than we let on.



p.s. my wife was born in n.y. and has never said " lighten the heck up". This is a southern gentlemans translation.

purple32

Hi There,

I have been on the caregiver roller coaster ride.  It is painful and lonely.

It sounds like you are doing well , but experiencing the normal range of emotions expected. Continue to support and love your wife through all of this.  Her feelings ( really do) have to be #1 at this time.

Having said that , when my husband was going through treatments, I looked for a local support group - which was very easy to find.  I went once a week for about 3 mos.  It helped me tremendously.

Good luck to you=----stay strong!