Breast Cancer Husband Needs Advice

CancerHusband1

Breast Cancer Husband Needs Advice

CancerHusband1

Hi - this is my first entry into this forum and I am hoping to gain some insight from women willing to share their inside knowledge on how I might better support my wife through this dx. What I have learned sofar is to listen, listen, listen (which she says I suck at - but honestly, some times when she talks to me it is very hostile and aggressive and that can be very draining after a few hours). I also know that on the toughest of days I really need to try and be perfect. Being human, I am inevitably going to fail and we both know that but my wife, at times, doesn't seem to accept that, as she expects perfection most of the time. Its very hard to live up to those expectations.

Her dx is 1/29/08 stage-1 invasive ductile er/prh+ receptive breast cancer. As I have read, everyone reacts differently to a breast cancer dx and over the last 8 months I have made probably every mistake a husband could make (but no infidelity!). My wife and I have been married for 5 years and together for 10. I love her dearly and this has tested both our wills and has pushed us to the breaking point numerous times - especially my wife (understandably). We have said many hurtful things to eachother over time and have learned a lot about living with a breast cancer dx and how that affects everyone around you - especially the two of us. We have no kids. My wife is 35 and I am 40. I just started a new job in June and am fortunate to be working in the health care industry supporting a team of nurses in an outbound call center. I am also the sole provider in supporting the household and am my wife primary (and basically ONLY) caretaker, except for her medical team - these are both very taxing situations for me to be in and to be expected to function at peak excellence all the time. The financial, work and caregiver pressures areat times, insurmountable and makes me just want to give up totally.

Before you mention support groups - I have looked into them in my area and there aren't that many but I will try and utilize the few that are available and see how effective they are. I do have a very close uncle who lost his wife 6 years ago to cancer (they are also my god-parents) and he has been wonderful to talk to.

My wife had the tumor removed 2/21/08, completed rad treatments in 5/2008, tried Tamoxifen (usuccessfully due to an allergic reaction) and is now moving toward her 2nd of 8 chemo infusions (Adriamyacin + Cytoxan for the first 4 sessions then Taxol for the final 4 sessions). Hopefully that will be it and this "insurance policy" will provide her a long, healthy, natural life to enjoy!!!

My reason for writing to this forum is to find some more "effective" help from those that kow this disease personally and have experience in helping their husbands be better caretakers. I have learned a lot and sometimes my wife acknowledges that but lately I feel (and she does too) like I am failing her and not living up to her expectations. I have read the Breast Cancer Hsband book and found it helpful but also found it limited, in that, a lot of the examples of the people in the book and the scenarios they paint in how they deal with things such as hair loss don't pertain to my wife.

There is much more to write but really just wanted to get started on how to be a better husband and caretaker. I feel very frustrated that I am letting my wife down, I am deeply depressed and fighting to stay "positive" but some days I just can't.

If anyone had any advice please feel free to contribute - I am anxiously waiting for your replies!

Thank you for your time and kindness.

Panchoandlefty

First, she if she is going into her 2nd ACT chemo, she will probably lose her hair very, very soon. It does pertain. 

I am 40... I started chemo on my twin's 4th birthday. My son is 6. 

I am fairly sure my husband could have written your post. I can only share my insight. I am sure she adores you... she just can't connect to much right now. It is an emotional, confusing time. 

For me, a defining feature of this experience is how out of sync I often feel with the world in which I now operate. No offense to the wonderful, older women here, but it is very, very isolating experience to have BC in your 30s and to suddenly have more in common with your mom's friends than everyone else you know.

To be hitting menopause when your friends are having baby showers. Or, in your wife's case, if she isn't going to suppress her ovaries to take an AI after chemo instead of the Tamoxifen, to know that you have to made a choice to maintain a certain quality of life (and hopefully fertility) which may put her at a higher risk for the cancer to come back. These things really, really suck. 

And, to make it worse, if your wife is anything like me, she probably feels guilty for dragging YOU through this. You think you don't live up to her expectations! Heck, I am sure she thinks about how much better your life might be WITHOUT her.  I am not saying she is suicidal or anything, it is just horrible to feel like you have wrecked someone else's hopes and dreams of what their future was supposed to look like. I think I have really pushed my husband away b/c of that guilt. 

I don't think I realized how much I pushed until I wrote that. 

My husband is a guy (duh) and the easiest way for him to show his emotions is through sex, which I am avoiding like the plague. Physically, I don't recognize myself, much less feel sexy. It is so  hard to connect on that level at this point. Then there are the hot-flashes and night sweats (which she'll get during ACT if she hasn't already). And it hurts. And neither my head nor what's left of my body can get very revved up. I could try to "fake it 'til I make it." but there is a lot more fakin' it than makin' it these days. To tell the truth- since chemo, I haven't even had the whatever-it-is to try very hard, which is very, very sad because I love my husband so dearly.

I know he loves me. I know he NEEDS to show me that physically, it is just really, really, really hard to get there emotionally. So, my husband also feels physically rejected... I know HE thinks I am purposely rejecting him or that I am disappointed in him or something which really couldn't be further from the truth... I just don't know how to get there. I am stuck in Cancerland.

And then there is confronting his very real, open fear of losing me. I remember when I was first diagnosed, first had surgery, first started chemo...  He'd be really strong, but would sometimes just break down. Usually, at night in bed, quietly. I could hear him and it broke my heart that I brought this into our home. I could fake reassurance, but I was scared, too. And when I really had something to be scared about, like when I got news that I didn't metabolize tamoxifen well, I was afraid to share it with him because he was already so freaked out.  

I try to keep him away from my appointments and such. He tried to come to chemo, but I wanted him to leave... I don't know why. I didn't want him to have to see all of it. I guess it is my weird way of trying to protect him from it all. On one hand, I don't want him to come to appointments while on the other hand I get resentful that he doesn't "get it" or know my treatment plan. Great, huh. 

My husband is an engineer, so add to all of this a strong desire to fix things and to have them tidy. Nothing about me is tidy right now. I look great, but I am an emotional train wreck. He can't fix it. I think that makes him feel useless (which he isn't) and it makes him try to be overly-helpful which can be sort of annoying. Point is, you can't fix this. Just be there.

Sometimes when he helps to do things when I am sick/tired/whatever, instead of taking like a nice, good deed, I get defensive-- like he is trying to show me how things SHOULD be done. I know he doesn't mean it that way, but I have all these crazy, angry emotions flying around and sometimes they get mis-directed.

And, he takes data at face value so, for example, his book says I only have a 12% recurrence rate, which he thinks is great... It is great. But still, sometimes his "positive attitude" feels more like total denial. 

Also, I've pushed myself very, very hard to stay in good shape through this mess. I work out an hour a day, at least. I worked out daily trough chemo and ran a 5K in my 5th week of radiation. I do great in the morning, so I look like I am sailing trough. Only he sees the truth. By the time he comes home, I am totally spent. That said, I sometimes think that he feels like if I could run a 5K, I should have enough energy to hangout with him... He never gets to see the good stuff- just me tired, crashed on the couch. By about 6pm, I am cooked. 

Does she have support, besides you? Is there a Young Survival Coalition group or something for younger women at her treatment center? If not, YSC has active boards online so she doesn't feel alone. That may help her, and, in turn, help you.  I think you just have to be patient and love her through it. That your only connection is an older (I'm assuming) aunt who passed is hard. She needs to tap into some experience of women her age. Stuff like dealing with fertility, premature menopause, and how to stay young when you feel old. 

As a group, in my experience, young women tend to be pretty bitter... some just lack the maturity of the older women, some feel this is too unfair, some are horribly jealous, some think they deserve pity. I don't know. It can happen to the best of 'em.

Is she working? I can only imagine how isolating and depressing this must be if she doesn't have much else to think about. And, I would guess, if she doesn't have other things going on, it would be hard to pull her out of it now. I would think that could make one very dependent.

After 9 long months, I am entering my final week of treatment. I had a bi-lateral with reconstruction (the same week as your wife's surgery), dose dense ACT chemo, 33 rads... I am JUST starting to remember who I am beyond being a cancer-patient. It is a slow process, but she will get there.

A word of warning--- her distance/dependency, the pressure on you to be supportive, and your feelings of being inadequate may get worse during chemo, but this too will pass. Try to get her to open up, but don't pressure her too much. Speaking for myself, I have dammed up a lot of emotion. I know it needs to come out... It just overwhelms me. 

You sound like such a sweet guy. I am sure she isn't disappointed. Cancer doesn't always bring out the best in us. For me, it can be like swinging wildly between manic empowerment, perky reassurance, anger, self-pity, guilt, and dread. All this while feeling like I have a bad hang-over and horrid jet-lag.

Wow. I feel like I've been to the shrink. I hope that ramble helps you half as much as it helped me. I need to go hug my husband.

Stephanie 

ETA- read the "Has Cancer Changed the Person You Are" thread at the top of the page. Yup. Hard, emotional times not just for us, but for those who love us. 

Lesley-Ann

My husband reckons he could have written your letter. He is 55 and a retired toolmaker and I am 47 and was a credit controller in a medical equipment company.  I am now a housewife.  I had my lumpectomy and the node thingie op 2 weeks ago and I am ready to take the Autovilla and set up home in a camping site in Nelspruit (Mpumalanga S Africa) near the hospital for the next 2 months rather that live with him and then have to drive 200kms round trip for radiation.  Two weeks and I want to hit the road and I think he wants to hit me.  And this is just the beginning...  I myself have just 2 little words to say "Be Nice"  Please that's all we want.  Just treat us as though we are a little bit special.  Everyone seems to be under the impression that I have had like a mole removed or a tooth pulled - you know the tumour's out so get back to normal but it's not that simple. I am very grateful that the surgeon could do a lumpectomy and I get to keep my breast but this is cancer not an abcess and this is what no-one on the outside seems to get. And then for me the worse is that my husband isn't what one would call a 'boob man' - so seeing as he is not that into breasts that makes it all that much worse for me.  I wish sometimes that if the cancer was somewhere else he might be different. I alsoget so pissed off and angry and think that I won't even bother with the rest of the friggen treatment and maybe it would be best if nature just takes it's toll and then I won't be in anybody's way and I won't feel so sad anymore.  My husband is a biker (BMW K1200GT) and we went for a ride on Saturday with our 25 year old son.  It was great (but my oncologist said to me no alcohol and I haven't had any and it doesn't bother me any) - but then he gets like all funny because I won't order a cider - a little can't do any harm he says.  See what I mean.  He just isn't taking this very seriously at all.

wishiwere

Stephanie!  Very well written and informative post!  Thank you for saying what many of don't.  I hope your dh read it, b/c I'm going to have mine read it!   Thank you!  Explains it so well!

Cancerhusband....read it again.  She explains the process sooooooooooo well.  And yes, your wife WILL lose all her hair (most likely her entire body hair).  Of course I did keep ONE bang hair on my forehead till about 1 week after A/C!  Just couldn't shave it!   and to be honest here...that loss of hair was more emotionally devastating and draining than anything else in the journey.  But....after I got used to, it was so very much easier to NOT have to deal with it while doing treatment, that I rather enjoyed it.  5 minutes showers are fantastic!  Why women don't go bald permanently is beyond me!  What a waste of time and energy hair can be every day!

Good luck to you and your wife.  Prayers and good thoughts for you both!

done

To give advise is always easier than getting it.  that is what i have to remember but here it goes.  My husband is more of a mechanical thinking fix it guy so when BC diagnoses hit me in July and me being more a more emotionally driven person we too said a lot of things that can't be taken back.  Some of the best advise came from my supervisor and his wife who are in the health care field.  My supervisor in a half hour on the phone explained to me there reason i was angry with my spouse was my inner child was scared.  This sounds soooo psychological.  But guess what he was right.  Fears of abandonment and no one to help are common amongst women dealing with breast cancer.  There is not just the worry of relationships not going well but also the asthetics of what BC does to body image with surgeries, baldness from chemo, facing menopause etc.. You don't have to be an angel.  Just be there for her.  If you like sports go hit some baseballs at the batting cage or target shoot or whatever you do for stress relief you will come back to your partner released of some of your stress and she will get a break from having the stress of having you around wound up from the stress.  That is hard to understand but it is real.  Finally if there are no support groups don't think that men do not talk about how they feel about breast cancer and how it affects them. Some of the caretakers in her team may be able to talk to you.  The breast cancer survivors  group may have a survivor who could at least talk to both of you if you request.  Please don't feel that you are alone.  I felt alone when my diagnosis of BC was delivered but now i am almost through chemo and sending thank you cards to my friends who lent their support. 

peace41

I lost my sister-in law to bc this past April. She was first dx in 2003 and was clean until August 2007. When it came back,  it came back very angry and couldn't be stopped. I loved Terry like a sister and since last August we grew close. I am self employed, so it was easy sometimes to arrainge my schedule to take her to the doctors office or for blood tests, etc. I can only tell you how I dealt with this horrible situation. First I supported my wife and listened to all of her feelings. Sometimes I said things to her and sometimes I just looked into her eyes and held her hand. I told her that fate cannot be controlled, but faith can. I am trying to help her get past the anger and bring some peace into her life. I DO understand the anger, but I believe God has a big plan for us and that someday we will all be together again and she will see Terry with open arms for her.

As for advice for you, I took Terry to the beach a couple times(she loved the beach) we had Springsteen blasting on the way down. I cooked for her some of her favorite foods. I brought her flowers and plants all the time. I made up little cards and funny songs to try and lighten things up.

I sat with her so many hours just holding her hand and listening. I consider it a gift, that I was able to spend so much of her last days with her and I hope she felt a little better from that. I wish you and your wife the very best of life and try doing some little things for her, I know she will be happy for them. This is such an emotional roller coaster, give yourselves a break now and then and find some common pleasures. Good luck.     Jake 

wishiwere

{{Jake}} So sorry you and your wife lost your sil to this dreadful disease!  Thank you for being there for them both.  I'm sure they both appreciate(d) you being there.

Cancerhusband, there is a lot of great advice.  Bringing some normal activities back into your life will go a long way also.  I know in treatment it's hard to go and do things, but sometimes just a ride (even with gas prices so high) is a nice get away from it all for a day.  Great time to see the colors if you are in the right area A picnic...out for take out ice cream.  Just spending time together doing 'normal' things would help you both!

CancerHusband1

Lesley-Ann,

I thank you for your reply and my heart goes out to you. I already feel better by getting engaged with those that are actually suffering rather than some men's group where everyone whines, complains and "bonds". I had a feeling that getting "inside" information from other would be helpful and it is - I would encourage your husband to join these discussions to gain a more insightful education on what goes through a woman's head and that may help him better support you. Its already helping me better support my wife.

It really touched me when you said to be "nice" to us and treat us special. It reminds me of just how special my wife is to me and I really miss the days before this happened to her/us. I have learned quite a bit from my wife, from books, and now online, and from my doctor and therapist.

Its been a long 9 months and has forever changed my wife's and my lives. There is always a brighter side to things but I am learning that the one going through what you and my wife are going through either doesn't want to hear it, can't see it, or just doesn't care.

Well, I'll tell you - I care. And I will continue to try and "hear but not cheer" and to encourage my wife to remain optimistic, regardless if she gets mad at me. Like a typical guy, my instinct is to "fix" this situation. I can't and I have given up on that a long time ago. Its something that is a part of us now.

One thing I can say for sure, without question, is that I am so fortunate to have been with my wife from the moment she was diagnosed to this very day and 98% of all appointments in between. That is something I am extremely proud of and feel very lucky to be able to look back on all those appointments, some good, some not so good, to know that no matter what I was with my wife, by her side, and that helped me learn and appreciate a lot of what she has had to endure.

There is a good book I would recommend for your husband if he's interested..."Breast Cancer Husband". It helped me in the beginning...that's all I'll say.

Good luck to you and remember to stay tough because you CAN and WILL get through this!

God's speed! Matt

CancerHusband1

Thank you so much for your thoughts. 5 minute showers are nice! I have started a "cheat sheet" of sorts - kind of like a mantra I say each time before I walk into our home:

Be kind...Listen, listen, listen...Be there for her...Don't take anything personal...be patient.

These are things that have proven to be helpful. The hard part is to put them into practice when your loved one ios yelling at you about divorcing you, leaving you, wishing you had cancer, what an awful piece of sh*t you are, etc...that's the toughest part for me personally.

I do appreciate your thoughts - and good luck to you

Matt

CancerHusband1

yoda2008 - thanks for your reply. Great advice on the stress-relief. I am an avid gym-member and really enjoy strength training. I have found that activity very useful and effective in reducing my stress levels but sometimes my wife thinks I am "running and hiding" - that's not necessarily true. Working out and being active has been a part of my life for 40 years. Its one of the things I enjoy most in life. So, when I go to the gym...its my home away from home.

I am so glad you faired well on your journey. My hope is that my wife, too, will soon be sending out thank you cards as she finishes her chemo treatments late this year or early next year.

Good luck to you - thanks again for letting a "guy" join the party. matt

Shirlann

Hi good husband, try, try, try, not to take all this seriously.  First of all, she is pissed to hell she has breast cancer, so who does she take it out on?  YOU, because she knows you are very likely the only one who will love her anyway.  Not fair, but true.

Is she on anti-depressants?  They are a life saver and a gift from God.  They are not addictive, do not make you sleepy or dopey, and she can get off them after a year or so, when she feels she has her feet back under her and her confidence back.  The only rule is to get off them sllllowllly. They have saved many a marriage.

This is a very stressful time, for both of you, our doc put us both on anti-deps, and our marriage went well.  It really pushes you both to the edge.

So try better living through chemistry.  It works.

Gentle hugs, Shirlann

Lesley-Ann

Hi Matt

This morning when I got onto this site and read your reply to me I was so deeply touched that I had tears.  I then went on to type you this long letter and then I couln't submit it because I had exceeded my posts - I'm as new as you are - and then I lost the letter.  So this is a new one at the end of the day.  Went about things the way I normally do chores, laundry etc.  DH had erronds to run and helped ferry a friend who's car went into the garage for servicing.  Other than that he pretty much ignores me.  Last night he bathed and said he was sleeping in the spare room as he was tired.  Today he mumbled something about my snoring that bothered him the other night then after his bath he went to sleep in the other room - without even saying good night!  This is about the 4th night since I came back from the hospital (exactly 2 weeks ago today) that I have been left to sleep alone.  I don't snore and even when we argue he doesn't leave the nest.  I feel really abandoned and alone out here.  And this is just the beginning. The letter that got lost this morning was really a whole lot brighter than this one at the end of the day.  Sorry!  Hope you and your wife are faring a lot better than we are.  Kind regards

lynn4

My heart really goes out to you and your wife.  What really helped me 2 years ago was just to have my husband listen to me when I needed to talk.  I felt as though I asked "why me" more than anything.  He had enough knowledge and understanding to calm me down and get my focus back on one tiny step at a time.  Before I knew it treatments were done.  We have 2 kids, I put on a brave face for them as much as I could - kinda took the focus off of me - it helped.  Not sure if this helps but my prayers go out to you and your wife!

One Day At A Time!

Lynn

mybeautifulsister

cancerhusband,

my sis has B/C and she is newly married, 3 months after marrying she was dx. My brother-inlaw is going through some of the same things as you, my sisters guilt is so overwhelming to her, when she found out she needed mast, and would loose hair, she BEGGED him to leave her, alls she did was cry, sob, scream because she didn`t want him to see her looking deformed and bald. She would say, "Please go and have your life, you didn`t sign up for this 3 months ago, you don`t deserve to be with  someone who has cancer " and she still after all these months goes into this rant(who can blame her)(they  only knew each other for 1 year before they married, fell madly and passionalty in love, in their 40`s) she now will have her last chemo in 3 weeks, she is bald and every effect from chemo you can get, she got, had masct. and he is still there, still loving her, they fight like hell everyday, but he tells her at the end of every cry, sob, scream, that "there was a reason for them meeting, there was reason they fell so hard for each other, that he was for some reason supposed to be there for her, and he was not leaving" it reasures her, because the bottom line is she is afraid he will leave her. Just keep reasurring your wife, especially when things seem to be going pretty good. Make plans to go places that are an ineterest to HER,give yourselves something to look forward to, those things that my brother in law does, really helps to secure her feelings. You seem like such a wonderful husband, thats why it is so hard for  her, thats why it is so hard for my sister, if he were an Ass, as so many can be, it would be easier.Hang in there please, you both need each other!!!

Deb

mollykitten

To cancerhusband1,

I just wanted to let you know that I admire your courage in asking for help.

I think that there are many other husbands, boyfriends, etc that could really benefit from doing the same thing as you, if they were just open enough to reach out for help like you did. And who better to get that help from, then women with breast cancer going through the real ordeal! : )  

It's sounds like you have received some excellent advice from many of the other posters who have responded to you.

I will also just reiterate the same great advice already provided to you by others:

     *Be kind

     *Be there

     *Dont take anything personal (remember she 's not mad at you, she's angry at having breast cancer, and unfortuntaely your the closest person to her, which means you might bear the brunt of the "storm".)

      *Underneath all of the anger, hurt, and frustration, she does love you, and is grateful to have you by her side.

      Take care and Good luck,

       Josie : )

        

CancerHusband1

Shirlann,

Thank you for your kind reply. I have come to a point of acceptance of sorts knowing that my wife  is pissed at the cancer/treatment/side affects and not me (at least not most of the time). She is lucky in that I am not the only one who loves her, she has others around her and I am very glad she does. I feel terrible for those who do not have any/enough support around them. It must be terrible. 

I hear ya on the anti-depressants...been there done that, personally. I agree with you about this being a very stressful time, for both of us. There is no doubt that this whole situation has really pushed us to our limits. Some days I don't know where I get the patience or stamina...but I do. Sometimes you just have to dig deep, have a little faith and push through the pain knowing that tomorrow may be a better day

Take care, Matt

CancerHusband1

Hi MollyKitten,

Many thanks for your reply. I can tell you mean it. My wife and I have been through hell on earth. Sometimes I don't know where the time goes, the patience comes from, the money goes, how our love survives, etc...but I know two things; my wife and I do love each other, and she is a tough woman and will get through all this.

There are many facets to this journey we have been on and it has educated both of us to some of life's finer points. Like how family, friends, neighbors and coworkers react. Her maternal side of the family has reacted very poorly and honestly dispicable in my eyes - but then again, we all have our faults and our limits and I can only hope that when we both pass the upcoming milestones and things get back to somewhat of a more familiar and normal pace, that all is forgiven and life goes on.

I am very fortunate to be surrounded by many supportive family, friends, and coworkers, and especially my boss, an RN Manager of 34 years who has just been wonderful to me/us through all of this. If I was working for Corporate America I cringe to think of where we would be right now.

I have grown to respect my wife more for her strength and I have finally seen her at her breaking point on numerous occasions (no more brick wall with this shit going on).

There is one thing I will never forget about this whole thing and that is the frightened, needy look in my wife's eyes during some of the most emotional times - it is heart-wrenching to say the least. It is during those moments that I would crawl through fire to alleviate her pain if I could. To have her look into my eyes with such a frightened look asking me to make sure she is going to be all right or to protect her, etc...is so touching. It has burned itself on my mind forever. She is my angel and I hope I can continue to be hers.

 I love her and appreciate the fact that we both realize this is, at the very least, an extremely difficult journey. I know someday, with some ailment, it will be my turn, and I only hope that she can be there for me when I need her.

I love her...thanks so much for the note...Matt 

CancerHusband1

Thanks Jake - your note was very inspiring. Sorry for the late reply. Things get a little busy for me and I don't always take the time to come to this site. But am trying to more often as I find it helps me and my wife and I when she knows I am seeking out advice and company from those dealing with what she is dealing with. I also feel special to have been by my wife this whole time. It has not been easy and it has definitley been a learning experience...and I continue to learn. She is about to undergo her 3rd of 8 infusions this week and she is not looking forward to it - who would be right?  I love her. She did lose her hair but honestly it really has n't bothered me and all. But it has affected me. It has made me feel more compassionate when I see her balding head or hold her and kiss her gently on her head or skull cap. The wig she picked out is reeally nice - I never thought I would be saying any of this but...here I am.  I'm glad the folks on this site have been so responsive - it has really been helpful.

Take care Jake, sorry for your loss and it sgood to know there are goos people like you out there. Hang in there!  Matt