Life seems to be about losing

[Sheila]

During my 5 years of this journey, I have lost many things...my breast and maybe some feeling of femininity, my job (which I loved)due to illness and treatments, my social life, unless you count going to the Dr and chemo center, my hair due to treatments, my body...yep all those chemo pounds....my best friend, and now I feel like I'm losing my husband to this disease...
I have always gone alone to treatments and Dr appointments, because they are far away, that way my husband didn't have to take time off work. Now with my new regimen, and all the premeds, he has to take off work 1 day a week to take me. He is using all his vacation time driving me. He never says he resents it, but its different, I know he's tired but he acts so indifferent to me, like this is such a bother. I wish so badly that I could drive myself, but I am too sleepy to drive the 80 miles home alone. I used to feel cherished, loved, respected, but lately I feel like I am just more of a burden. He reminds me that he misses the big income I made when working, the thinner long haired woman I once was, even the bigger life insurance policy I had when working....
I have to wonder is this his way of coping, or am I losing him to this disease too?

[ita]

Dearest Sheila,

I am so sorry you are feeling this way. I can feel your pain through your words. I wish I could hug you. You are a rock to this community. You are there for so many. I think we all have a right to have our moments of sorrow. We do lose a lot but we have a place to share our fears and sorrows with those who are right there with us. That allows us to keep on trucking along. Our husbands, on the other hand, being the men that they are, have no one to share their thoughts with. They have to show the world that they can handle anything. Underneath it all, they are in pain too.
Have you tried to talk about your concerns with him? I know my would just blow me off. How would yours react? Maybe the reminders of what use to be are his way of trying to have something else in common with you other than driving to doctors offices and other medical appointments. You should try and see how far you get if you bring it up. I know that I usually make things bigger than they are and make myself sick with worry. This is not a time for you to be stressed.
Please know that you are loved, respected and cherished by many. I know it's not the same as seeing it from your husband, but for now maybe it's enough to put a smile on your face.

With much love and caring,
Ita

[mke]

ouch!!

I bet you miss those things too. Heavens knows I miss stuff from my pre-BC life.

Your husband isn't being super supportive, but he isn't the only one. This time around my husband has been great, the first round he was an a***ole. It was his idiotic way of coping.

What can you do? Well try to give him a break. Is there anyone else that you can call on for a drive to treatment? There are volunteer drivers to treatment here. Some of your friends would probably like to do something but have never been asked. At times you just need to ask, it's hard but people want to help and feel awkward about being intrusive. I'm no do-gooder but I would have been happy to be asked to take my neighbor off to her treatment. The broader your support group is the better for you and for your supports.

[caya]

Sheila,

Sorry you are going through this with your DH right now - but after 5 years, I suppose we have to give the guy a bit of a break - he was bound to crack a bit at some point.
I think men in general are not all that touchy-feely - and he is probably terrified of losing you, especially with some of the latest developments in your journey. Unforturnately he is expressing himself out of fear and frustration - and let's face it - this disease is the f***ing pits.

As one of the other gals said - Sheila, since I got diagnosed and found this site, you have been one of my heros - Obviously not the same as receiving kudos from your husband, but he's only human.

Please ask someone to take you to a treatment - believe me, people are more than willing to help, they just don't know what to do. Here in Canada the Canadian Cancer Society has volunteers who drive patients to their treatment if they need a ride.

I hope that you get through this with all the grace,dignity and love you deserve.

all the best
caya

[BonnieR]

Given the way men can be, I guess it is unrealistic to ask if there is a support group he might agree to attend. Or a social worker or psychologist at the place you receive treatment who he might talk to when you are both there anyway for your therapy....
My husband and I belong to a 12 step program because of me so he might be a TINY bit more open to such suggestions. Not that he has sought out anything.
He is "stoic" like so many men.....I can only imagine what he is going through....

[tricia keegan]

Sheila I'm sorry you're feeling this sadness right now, is it possible all these meds have you down too and maybe you're seeing things blacker than they really are?? My hubby was great during my treatments, I don't drive so he took off work (self employed) to be with me driving ...cooking or whatever. However since I'm not two years out he acts like this never happened and at times is selfish and indifferent which leaves me feeling alone too and concerned for the future. he has said "this cancer does'nt just effect you" and of course he's right. I think maybe your hubby is just dealing with this his own wayand possibly does'nt realize how hurtful his words can be to you. I agree with the girls if you can get someone else to drive then do so but if not ...if it was him that had the cancer you'd drive him and gladly lose time from work etc and the lower income so don't feel too bad about how hard done by he thinks he is. He may have deeper thoughts and feelings too about your illness that he does'nt discuss and I hope this passes soon as you don't need the extra stress.
Be a little selfish here and think of YOU right now and stop feeling guilty!!

[Liz J.]

Dear Sheila,

I am so sorry that you are going through additional stress. You always have been a great source of strength and support. I recall that anytime I posted with a problem/concern, etc. you always replied in a compassionate, upbeat and informative manner depending on the issue. I just wish I could help you with this situation. I know it must hurt like hell when you hear things about how you looked in the past, or finances or whatever. You did not ask for this disease and I am sure if the shoe was on the other foot you would do anything you could to comfort him. I know he must be frightened about your health and I am sure he loves you, but maybe he needs a little reminder of "For Better or Worse" "In Sickness and in Health". If you ever want to chat privately please send me a pm and I will give you my e-mail address and phone #. If you need a shoulder to lean on I want to be there for you. In the meantime, please hug those loving labs and I will keep you in my prayers.

Sending hugs,

Liz J.

[Audrey]

Sheila, I was sorry to read your latest post--you've been through so much lately...I was reminded of my own husband's reaction to my cancer--I also went to treatments by myself--his mom would drop me off and he would leave work a little early to come pick me up. I always felt a little jealous of the other women who always had their spouse by their side during every treatment and dr. appt. Anyway, I also lost both breasts and my hair, gained 20 pounds, felt tired all the time and had two small children to raise. One day he told me he was so tired of all this, that he had "compassion fatigue" and just wasn't attracted to me anymore. I was devasted. What happened to "in sickness and in health" vows and all that? We did talk to a social worker and she made me understand a little how much stress he was under and how differently men cope with their fears of loss. I thankfully had a lot of support from my friends and family, and we were able to get our marriage back on track again. Of course, now that I'm six years out from my diagnosis, have implants, my hair back and lost the extra weight, life is good again. However, it weighs on me that if I get sick again, he's not going to be my "rock" or as supportive as I would like him to be. When I mentioned this to my friend, another bc survivor, she said "that's why we have daughters" and it's true, I know that my little girl will be there for me. I can sympathesize with your pain and am wishing you the best that you can find some peace with your husband's lack of support at this time--Sometimes they are just doing the best they can, even if we'd like it to be more. I agree that finding other support people would be a good thing for you right now until he's ready and able to step up to the plate.

[Patb]

I wish I was nearby to drive you and give your husband some time off.
I know things get rough for caregivers also but those words do hurt and
we certainly did not ask for this disease, it is just life and all its ups and
downs. Take care and know that we are thinking of you.
patb

[sassy]

Dear Sheila,

I am so sorry that you are dealing with yet another problem brought about by this horrid disease. You have always been such a rock to many of us, please know that we are here for you if we can help in any way.

I think our spouses live in fear as we do, and men to have different ways of coping. If he is open to counseling, I think that would be very beneficial. But many men are not. If you have others to call on, it may help him to feel that he also has a support system.

Please know that you and your husband are in my thoughts and prayers.
________
LIVE SEX (http://livesexwebshows.com/)

[anne2]

Hi Sheila,
I am so sorry that you are feeling like a burden. I do hope that your husband is going through a bitter phase. Maybe he's just upset at what you have been dealt in life. I am sorry that he seems to be burdening you with this.
I can say I felt a little of the same when my mom had her stroke last year. I was just so overwelmed by all the strikes, first the cancer then something else. It may be just from exhaustion. That's not an excuse though, just an insight.
I think it's only fair that you tell him how you feel. It may help ease your mind some also.
Regardless, it is a blessing that you are alive no matter what you have to go through, just to share the time with your loved ones.
Big hug and lots of love,
Anne

[Joe]

Shelia,

Have your husband apply for Family Medical Leave. He is qualified to take 12 weeks off -without pay, but his employer is required to continue his benefits. It is a Federal program and his employer has to grant him this leave.

He may also apply for intermittant leave ie: as necessary. That way he has one entire year to use up his 60 days. That way he doesn't have to use up his vacation.

Some states such as California provide up to 6 weeks of paid family leave.

Warnest Regards
Joe

[Jean]

Dear Shiela,
It also sounds like your hubby is very angry...this disease will have that
effect. Maybe he even feels angry because he feels this disease robbed
him of what he knew you to once be...before bc. We all change from
this journey - sometimes for the best and sometimes it brings out the
worst. I was very sorry to read your post - as I strongly admire you
and you are a positive role model for many. I wish I were closer - as I
would be honored to drive you - and I know we would have fun.

Please know you are respected and loved -

Sending huge hugs,
Jean

[tousled1]

Sheila,

I'm so sorry to hear the problems you are having. Yes, we gain weight, lose our hair, lose a breast and sometimes two, but we are still the person we were before this dreadful disease got a hold of us. I don't have a husband or significant other to lean on but I do have a wonderful daughter. Now that I'm back on weekly treatments she takes me to every one of my appointments. She does work from home on Thursday and that is the day of my treatment. It works out good as she takes her laptop with her and manages to get some work done while I sleep from the premeds. Your husband is probably very angry -- not at you -- but at this disease and what it has done to you. You are a very brave woman and have given some many on this site such support and compassion. If possible, I think you and your husband should sit down and try and talk about how this is affecting not only him but you as well. It's hard being the patient and sometimes I think it's even harder on the caregiver. I know with my daughter I was always very strong and here I am the complete opposite. Just know Sheila you have many women here for support and a shoulder to cry on. I just wish I were closer to you -- I'd give you a great big hug! Hang in there, things will get better.

[Grace]

Hi Sheila,

You're usually so positive that I was surprised to see your post title; there are certain people on the board that I use as a measuring point for myself, and you are one of them, so I'm really sad to find you sad.

My husband is great, but there are definitely times when I know he is having problems with my cancer, usually when I'm feeling low or looking at things bleakly.

I know this. If my husband had cancer I would be worse with that than I am with my own. I honestly don't know how I would cope as I would be worrying 24 x 7, whereas for myself I go days without worrying. Perhaps if you tell him how you feel. Also, I know in my marriage sometimes it's me, as I find myself asking if he still loves me or finds me attractive. He always comes back and asks the same of me. It may just be his way of coping with the stress.

I'm so sorry you're having an off time, but if anyone has a right it's you. Very best.

[Ceesun]

Sheila, I am just one more person who has benefited from your insights and thoughtful comments. Stay close to all those around you. Talk with your husband...breast cancer certainly isn't very practical and we all do lose some things for sure. I know a little of what you are feeling..we all find our ways to cope, endure, and hopefully thrive. I know you have grand children and I have my first this year, a 9 month grandson...when I look at him I think he is a little bit of me going into the future...it comforts me. Love, Ceesun

[Ceesun]

Sheila, Also...you are a Winnner...stay strong. Ceesun aka Cathy

[Adriana Mangus]

Dear Sheila: I'm sorry to hear that your husband is acting this way.

Maybe he needs to have some type of counseling, some guys do not express their feelings appropriately and other just say nothing, it could be that this is "his way out" of frustration. He loves you, he feels impotent that he's unable to do anything to bring back the woman he met, the one he fell in love with, the "healthy" one, (we are still healthy, this is a chronic disease). Talk to him, tell him how you feel about his comments, perhaps he does not even realize what he's said to you and that you are hurting.

Sometimes my husband makes comments about my weight and I simply remind him of my treatments, and I also tell him that am still here, fat or not, and he should be appreciative for that. He simply misses the "other" me. Please do not isolate yourself, talk to your husband.

Please keep us posted..Sending you much love to you and your family.

[Mary Jo]

Hi Sheila............................After reading everyone elses posts I can't really offer anything more to the conversation other than to say I feel really sad for you. I can understand both sides of the story, as it were, as this disease is very draining on everyone. However, that being said, I wish and will pray for this, that your husband can find a bit of compassion in his heart as he helps you deal with all you are going through and as he deals with how it has affected him.

Sheila, I'm sorry. I really am. Thanks for sharing your heart with us. This is such a fantastic place to get out all those feelings we all carry in our hearts and that no one else understands but us.

I'm here for you in Spirit.

Love you and pray Peace for the day.

Mary Jo

[tricia keegan]

Maybe your hubby just needs a break from all this (yeah I know..how come we have to be the strong one's?) anyway maybe if anyone of the ladies (or gents) on here live close to you they may be able to help by driving you occasionaly?? Wish I could as I'd love to meet you and know we'd get on great:)
Just a thought...

[BonnieR]

Joe brought up a really good subject. My husband's company was very understanding about Emergency Family Leave and working around my short notice appointments in the early days of diagnosis and planning. Now we are able to schedule things more in advance. And it turns out that the worker in the administration office was a breast cancer survivor herself so she was really empathetic....
ETA: Joe, thank you for being the Webmaster for this life saving site!!!

[VaMoonRise]

Dear Sheila,

Hi Sweetie. I am so sorry to hear about the rough emotional time that you are having.

Often times I do think that this dreadful disease can be more difficult on the Caregiver than on the one living with the disease. The Caregivers pain, fears, worries, frustrations, sense of loss are often kept silent out of fear of adding to what you are already feeling yourself and are going through. My husband has been amazing through my entire journey with this disease. He has only missed one doc. app. since Dec. 23, 2004 and he has taken on so much as far as all of the financial burden, keeping me straight on doc. app., meds, driving me everywhere I need to go, missing over a month of work as of right now to be at home with me and he does practically all of the cooking and housework around here, not to mention how much support, encouragement, attentiveness and love he shows me everyday. I know this is kind of personal and I hope that I don't offend anyone, but the poor man does all of this and more and I feel terrible a lot of times because we have had basically no sex life at all since I have become stage IV. We have talked about it and he says that it doesn't bother him at all but I know that it must at times be very frustrating and such a loss for him because we had such a wonderfully active sex life before this. I truly believe that he has lost just as much as I have with this disease and possibly even a bit more because he has had to take on a role that he has never played before, housewife, lol, now he knows what it is like for the working Mom too, lol. To make it worse he is a very linear person, he doesn't do well at all at muti-tasking and I can be bad for throwing several things at him at once that I need him to do for me and this can cause us to butt heads at times. I am trying to be better about not doing that to him and waiting until one thing is finished before I give him something else to do. I forget sometimes though and still do it ocassionally. He truly spoils me rotten. I am a very blessed woman and I am sure to tell him everyday how much I love him and appreciate all that he does for me. He is the type though that always shares his feelings and thoughts with me unless they are about the worse case scenario's of this disease, his inner most fears and worries, etc., He even hates for me to bring it up or for me to talk about any end of life plans that I want to have taken care of in advance. He knows these things are important to talk about but he can't bring himself to go there, it is too hard for him emotionally. I know it is because he doesn't like to even think about those things and he doesn't want me to have to worry about him. Recently with everything that we have been through (emotional rollercoaster from hell) and all of the daily burdens that he has on him, he has been understandably more stressed which causes him to be more grumpy and to lash out at the simplest and stupidest of things, his blood pressure has even been too high lately. I try my best not to react in a negative way when he does this. Instead I try to calm him and offer to try to help in any way that I can to ease his burden. I know that when he lashes out or says things that hurt me out of no where it is just his way of releasing some of the stress and concerns that he has that he is too afraid to say out loud. He doesn't lash out at just me, sometimes it is at our cats, he will holler at them for things that they normally do everyday, and that he wouldn't normally give a second thought to. This isn't typical behavior for my husband, like I said it has just been recently since we have gone through so much over the past month or so. Heck, if you take into account how long we all have been battling this disease, it is a very long time to be dealing with so many emotional ups and downs, worries, fears, frustrations, etc. It is bound to take it's toll on a person and come out every once in a while and rear it's ugly head by means of bad behavior. I know that I don't know your husband but it sounds to me like maybe he is just going through a rough patch and this is his way of releasing some of that pent up frustration, which although is healthy and normal for him to do, it can be very hurtful for you because we all say really stupid things that we don't actually mean at times like this. It is just a way of masking our true fears and frustration. Men by nature are problem solvers and when they can't fix something it drives them nuts and can make them very frustrated and angry. By the sounds of what your husband said to you it sounds to me like he is /was just him pineing for the life you had before cancer and the life that he yearns for, for both of you now. I can understand that as I am sure we all can. I look at photographs of myself and of my life before cancer and wonder where did that woman and life go, I don't even recognize that person in the photo or that life any more. I hate those times that I feel or think that way. Luckily they don't happen often and they pass very quickly. I would try my best to not take it to heart what he has said recently and to cut him a little slack unless this is typical behavior on his part and an on going thing. In that case then I would definitely seek out counseling for both of you on an individual basis and together as a couple. I also know that at times depending on what meds I am on, how I am feeling myself emotionally or physically, has a lot to do with how sensitive I am and how much I can take something to heart that I normally wouldn't. Weeks ago while on the highest dosage of my steroid I was extremely emotional and irrational and would cry at the drop of a hat, my poor husband couldn't hardly say a word without me crying. I would either cry because what he said I thought was hurtful or because it was just so sweet that it made me cry. The poor guy was afraid to say anything out of fear of making me cry, he was probably walking on egg shells around me which I know is very stressful on a person to have to do.

Something else that might help is, you and your husband could agree to start writing down every day one little thing that you are grateful for, love about the other or appreciate. Like the posting that is started on here called "Joy," and put it into a box or whatever. Don't show each other what you have written down. Pick a time, like at the end of the week or month or whenever works best for you, where the two of you sit down together and pull out the slips of paper and read them to each other. You could even keep separate boxes so that when you pull them out you can take turns, reading yours to him and then him reading his to you. I think we all should do that with our special someone. It can only bring about joy and further closeness and appreciation for one another.

Just try really hard to asses the entire situation right now and ask yourself is this normal behavior for him or is this just something that he has begun recently. If it something that he has begun recently it is probably just a coping mechanism for him and he may deserve a little slack but if it is on going behavior than he needs counseling or needs to seek out some type of support, either from a support group, a family member that he close with or a friend. Whenever I feel like my husband is really stressed out and needs a break, I call on my step sister who lives in NC to come down for a weekend to stay with me so that my husband can go kayaking/camping for the weekend in order to relax and regroup. I will also call his best friend to come down that same weekend to go with him and if my step sister can't come his best friend usually will come on his own and it gives them a chance to talk and hang out which is always good for my husband. They need someone like that to vent to or just to take their minds off of things for a while. My sisters will also come down once in a while to give my husband a break from cooking and cleaning and things. If I am having a really good day and no one else is here I will demand that he goes out on his own for a while to have some of what I call "Me Time," as we all need that as well. I enjoy that time that he is gone also because I too get my "Me Time."

I don't know if any of this has helped are not Sweetie but I sure hope so. Like everyone here has already said, you are such an inspiration to us all and we love and admire you so very much. We are always here for you, you can feel safe here and vent to us at any time. I wish that I could be there with you right now to give you a hug, a back rub, foot rub, basically just be there to pamper you and to let you relax, vent, whatever. Hang in there Sweetie and hopefully this too shall pass quickly as just another bump in the road of this very long journey.

Sending you lots of love, hugs and well wishes, God Bless,
Nicola

PS: Feel free to e-mail me direct if you like at VaMoonRise@aol.com (VaMoonRise@aol.com). I will even call you if you like and we can talk for however long you want. :o)

[PinkGirl]

Sheila,
I am sorry you have to deal with this along with everything else. I noticed that all the Canadians suggested you get a volunteer driver from the Cancer Society. There must be something like that in your area.
I hope your husband is going through a phase and will soon realize that those kinds of comments are very insensitive. I would tell him so.
Although my husband has been fantastic, I have only had one "go around" with the cancer adventure. I don't know what he would be like if I had a recurrence. As wonderful as he has been, it is the women in my life who have rallied round me. I understand that this is very scary and difficult for our partners, but saying nothing would be kinder than comments about our
"former selves". I hope you are able to talk to him about how you feel. Good luck.

[Andrea Barnett Budin]

Sheila honey, You have the strength and courage of a battalion. Your wisdom and caring have carried many of us through hard times. It surely hurts me to hear about your additional problem with your husband. Paul was beyond great at my initial dx and 3 yrs later when I met, we both nearly fell apart at first. I got it together, w/meds and expanding my Spiritual awareness. I told Paul that I planned on living for a long time with my *stage fourness* but that whatever time I had left, my heart told me I needed to be in Fla. I'd spent 6 mnths there and 6 mnths in NY at the time, with Paul as a *snowbird* coming Thursday night and leaving Sun afternoon. The commute was wearing him down, but we did have a daughter living in Boca w/her hubby and our granddaughter as added incentive. I just love Fla. I need sunshine. I could not cope w/NY winters or its pace and much more. Paul agreed to retire -- which he truly did not want to do. I was going to Fla full time, regardless, needing to be true to my heart.

Paul's whole identity was in his job. He was lost. He had no reason to get up in the morning. Our easy living would be sharply curtailed. I was willing to make sacrifices for sanity and serenity. He went along reluctantly, scared of losing me, worried sick over finances and crazed by his inability to really fix what was broken. You know how men feel that is there job?! We sold. We bought. We moved from NY. We moved from southern Boca to northern Boca, again selling and moving, all through chemo.

Once we settled in, Paul went into DEEP depression. He resented being FORCED to retire, regretted doing it and BLAMED me with a vengeance. It was all my fault. Obviously, I had little control as is true of each of us. He withdrew, was morose, sat in darkness in the den at night and moped through the days. He is not one for therapy, I learned decades earlier. In a now 41 year marriage there are bound to be hard times. He is not one for talking his problems out. He keeps them semi buried and won't investigate his feelings, words or actions. He just won't. And can't. Unlike me. I talk things out, I self-scrutinize like crazy, analyze and push through.

I could see that Paul needed to be on anti-depressants. I believe your husband, Sheila, probably needs the same. If he would agree to therapy that would be great, but I wouldn't hold my breath, if you know what I mean. Of course, I suggested the meds to Paul, who was just full of anger and resentment and blame, with no room for my crazy ideas. When this kind of thing arises, a flagrant need for change that my urging has no effect on -- I call in the troops. I called my two daughters and explained the situation. They were sorely aware of the change in their beloved dad and each kept calling and prodding. When the three of us gang up on him, he eventually gives in. He read about an anti-depressant that a wealthy man had developed to help his son who was suffering mightily. For whatever reason, this was THE drug Paul would agree to. The change was almost immediate! He stopped hating me and remembered how much he loved me. He began to get involved in the community and made really great friendships with some outstanding men. They chat on the phone, have lunch together, play golf and cards. Paul is now extremely happy. I have never seen him so happy. We have been living in Fla since '99. He still worries about $$$, but those emotions that were dragging him done have evaporated.

Paul has always gone w/me for treatments, docs, etc. As an attorney in his own practice, he was able to take time off from work. He has a very strong work ethic and NEVER took time off before. For anything. He couldn't. He didn't even like going on vacation as he felt NEEDED at work. W/bc he felt needed elsewhere, w/me. I felt very blessed. One of the great benefits of this was that Paul would talk to other chemo patients, women and men, and the spouses of those bc patients who were able to accompany them. One husband in particular Paul bonded with, as I bonded with his wife. Myrna was my CHEMOMATE. I sat in the first chair on the left, she sat in the second. We each arrived at 9:45 and talked and laughed and compared notes (side effects felt, remedies that worked, feelings, etc.). We even went to dinner a number of times as couples. Paul got to ventilate his feelings comparing notes w/Norman who hovered over his childhood sweetheart. So without going for therapy, each got some therapeutic advantage from the relationship.

Sheila, I'm thinking you're husband is crumbling a bit inside. Scared of losing you, saddened that he lost the old you, deeply concerned about finances and his job -- all of which is understandable. I am so sorry he verbalized the things he did to you. I know how deeply it must have hurt, but I see where he is coming from.

8 months ago, in searching for an answer to my 22 yrs of hot flashing, it was suggested I see an endocrinologist. High blood sugar could cause that. Sitting in Paul's endocrinologist's office, now as the patient (Paul is a Type 2 diabetic) and reviewing my history somehow something came up re Paul. Whatever it was I HAD A LIGHTBULB MOMENT. Paul became a diabetic at the same time he became depressed, just after I metastasized in '98. Suddenly, I saw the connection between his pain and suffering and the illnesses that resulted -- out of my recurrence. My stage fourness had become unbearable for him. So, Sheila, I am cutting your husband some slack here, with all this in mind. I am sorry to go on about ME, when my intention is to talk to and maybe help YOU. But it is our experience that so clearly exemplifies our point of view and possibly impacts others. May you learn from what I have gone through. There are Lessons in there to reap.

Know that you are deeply appreciated by the women on this board, Sheila. Your intelligence, your attitude, your support and caring are extraordinary, as are YOU. We cherish your input. We love you for the wonderful, brave, strong, positive person you are. Please keep us posted on your situation and remember that we are each pulling for you in every single way possible. I wish you NED, happiness, much love and joy in the near future. Andi http://cdn-cf.aol.com/se/clip_art/gstres/celebrte/hug

AndiBB@aol.com

[Erin]

Sheila,

Your post, and all the responses made me cry. And what a response from the others! You have certainly touched a nerve!

As everyone else has said, I wish I could give you a hug and we could cry together. Your post is so heartbreaking. I am sorry you have to go through this too :-(

I am only in my 8th month since diagnosis and it is clear that my DH is already feeling the strain. He is distant and moody, and (of course!) won't talk about it or agree to go to any kind of support group or counseling. I alternate between understanding what he is going through, to being resentful and and angry that I have to take care of him, when I need to be taken care of. I have always been afraid, in the back of my mind, that he would bail-out if anything like this happened. So far he has not, but I think it is partly because of how awful bailing on a woman with cancer would make him look to others! That realization certainly did not endear him to me!

I think this experience has exposed the cracks and weaknesses in our relationships, and ours was not a storybook romance to begin with. Don't get me wrong, he is a great guy, not an a**hole, but we had our problems over 25 years. If you have seen the movie, The Breakup, he is the Vince Vaughn character, the guy who everyone thinks is so charming (and is), but wants everything on his own terms.

I don't have any more magic than anyone else here, and I have certainly not had to live with as much as you have, but here is what I have started doing -(I know we are each individuals and I don't know your relationship, but so far these things seem to be helping me)....

I am going to one on one counseling for myself. I want to stop resenting him and being angry at him. I want to be able to talk about issues as they happen, not store up resentment that will turn into bitterness. I know this is NOT easy, and we are certainly struggling with it - he is tired of all the "talking", but so far he has not refused.

I am struggling to try to create "cancer-free" periods of time in our time together. I know my mind is never free of bc thoughts, but I am trying to force myself to think and talk about anything else. Interestingly, my mood and frame of mind improve after those periods as well - I think I am giving both of us a "break".

I am doing more "fun" things for myself so I am personally happier.

I am trying to accept his limitations and concentrate on his good points - trying to see what he is doing for me (sometimes I really have to look carefully to find something - LOL), concentrate on that and verbally acknowledge him for it.

I am telling him clearly what I really need from him. Just the key, really important things to me. This is quite challenging as it is hard to make a request (demand?), in a warm and caring, but firm way, so I sometimes wait for several days for the right moment.

All this sounds like a lot of work, I know, and I would be lying if I said I didn't resent it sometimes (that is what my counseling is for), but after some soul searching I decided that I am not going to lose my marriage without a fight. And, I am not willing to stay in a marriage where we are angry, resentful, and bitter. I would rather be alone. I am trying to prepare myself for the chance that we might not make it - and that is a distinct possibility. But I am not letting go without a fight.

Wow,I am sorry, I have gone on so long - and all about me :-( But, bottom line, I want you to know you are not alone in this.

I will hold you and your husband in my heart and pray for comfort and peace for you both.

[Joy]

I, too, was surprised by you sad post as yours are always so upbeat-What are you, Human??????

You express yourself so well and I truly feel the pain you have. And I'm so sorry. I di lose my marriage, partly to cancer-it just made me see all the other problems differently. HOWEVER we did not have the years of foundation that you two have had.

I'm sure he is tired of this, aren't we all. And I think in a loving couple situation it is equally hard, just in different ways. We have to suck it all up and abuse our bodies to be rid of the cancer and try to remain hopeful during inscanity and those awful result visits. We have to look in the mirror and not recognize our own selves and, as womwn, we often are holding down the fort too!

But they are doing a lot of that as well. And I think we need to allow them time of pity (I allow myself that) and hope it doesn't linger, but leaves the system quickly. Maybe he needs to get away for his own sake. And I do so hope that you have some others to drive you, hug you, cook for you, pamper you. If I was there I'd do all of that in a heartbeat!!!

Marriage is work as it is and you throw this damn sdisease in the mix and it is HARD! Best of luck and so much love!

[rinaina]

Shiela, I was so saddened by your post for as everyone has stated, we always looked forward to your very upbeat posts from the past. You have always had such a positive outlook. Not much I can add that hasn't already been stated however, my suggestion would be to definitely communicate with your hubby, if he is receptive to talking, and relay your feelings to him and tell him how hurt your are. If you are having trouble doing this either at your end or his, then write him a letter. Sometimes seeing things in writing has more of an impact then when we get all emotional when we are talking. Many a times I have had to write a letter to my husband to convey my feelings or dismay about something because I get too excited, and not in a good way, when I try to talk to him. Please don't allow yourself to get too down about this. Sometimes too, when we are going through so much due to treatment and disease, we lose perspective and things aren't really as bad as we are seeing them. I am hoping this is the case with you. It is true what everyone says, we forget sometimes what are husbands are going through too. They are overewhelmed, frustrated that they can't do things for us or change our health, and they are scared. I think a good heart to heart either verbally or written is in order. If that doesn't work, please consider counseling for both of you. Don't give up on him or the two of you just yet. Best of luck with everything. I will be praying for you and your husband.

[chrisy]

Oh Sheila,
This disease is so devastating and it seems that "losing" your breast is just the beginning sometimes. As my 11 yo niece says,"it sucks the biggest thumb in the world"

Our loved ones also suffer, and grieve, various losses. If you hubby talks about missing your prior income, your prior physical attributes, whatever, he may be grieving losses, or feared losses far more unspeakable...his beloved, his dreams of the future...than hair and body shape. Not to mention loss of the "illusion" of control. And I"ll bet YOU miss all those things, too. I know I do.

Seeing you go back to a "heavy" chemo again maybe is a stark reminder. For me and my hubby, it was much easier to not think about these darker fears when I was in remission on Herceptin and having the recurrence brought it all back. Not to mention, for you, being on a meaner chemo can deplete your spirit along with the WBC (and, of course, the disease!)

Yes, this dumb disease does bring a lot of loss. I think, tho, that you are a stronger spirit which will not be defeated by it.

Only you know the strength of your marriage, but if you have always felt loved and respected, maybe you still are - YOU aren't the burden, CANCER is.

I know I'm rambling here, but your post brought up a lot of issues that I deal with (or don't deal with!). I also feel like a burden, and like the cause of everybody's pain. But that doesn't mean that my family feels that way. At least, I hope not. I try to stay focused on the real enemy but it is sometimes hard.

Much much love and hope things look up for your very soon!

Sucks the biggest thumb in the world.

Love
Chris

[dorinda]

Im Am Sorry That This Is Rough Waters For U Right Now. Do Call The Cancer Society, They Do Have People To Help Get Things Done For You,like Driving You To Chemo And Other Helpful Chores. My Husband Is A Workacholic And Owns His Own Business . I Wish Sometimes He Would Go With Me To Chemo Like Some Of The Other Womens Husbands Do But It Would Take Time Of His Busy Schedule And He Would Also Not Get Paid. So I Bet Ya He Would Also Be Alittle Irritated If He Had To Take Off Work Weekly And Take Me To Chemo. I Know He Loves Me And Worries About Me . His Way Of Showing It Is Working And Paying The Bills. I Am Blessed My Chemo Is Just Ten Minutes Away From My House And I Take Myself. So Do Call The Cancer Soceity And See What They Can Do And That Will Take Some Burden Off You Husband. I Wish I Lived Near By I Would Take You. This Bc Is Hard On Everybody. Keep The Faith Dorinda

[tousled1]

Sheila,

I talked to my daughter today about what you are going through. She is my caregiver now and is taking me for my weekly infusions since with all the premed I just wouldn't be able to drive. Her insight was that it is very difficult on the caregiver to see someone they love go through all the chemo and suffer with side effects. She said that it's particulary hard for her since I have always been so strong and that it's scary -- she's afraid. Needing her help puts a whole different light on the subject. I think your husband is afraid since you have always been able to go to your treatments alone and now all of sudden you can't. He's terrified of losing you. It's much easier to accept this dreadful disease from a caregivers point of view when the patient is able to continue on with life as it was before. This is such a drastic change now and fear is a terrible thing. It's hard to accept the fact that the old Sheila is gone and there is a new Sheila here now. Hopefully, this treatment will work for you quickly and things can get back to "normal." Oh how I hate that word! I think there should be support groups stricly geared to caregivers. Hang in there Sheila, things will get better. Your husband loves you but right now he is frightened and doesn't know how to handle it.

[Lani]

From what I understand you can call your local branch of the American Cancer Society (even if they are not that local) and they can provide you with rides to your treatment.

Can't hurt to check it out!

[Sheila]

Thank you all for the wonderful advice....I read through all your posts 5 or 6 times....I didn't want to miss anything, and I don't always feel on top of the game right now...(chemo chemically induced I hope!) Yesterday was a peaceful day for me and my husband...we actually had or took the time to just spend time together....for all the right reasons...something we had NOT been doing. It seems all our time together lately has been given to CANCER, and not to each other...our lives have been so focused on trips to the onc. center, trips to the Dr. etc, that things were not always placed in the right priority. We not only shared time yesterday, we once again shared our fears, our dreams...we even joked about how each of us has changed in the last 5 1/2 years....for better and for worse! (I reminded him that my hair WILL grow back, his won't...he laughed.) It was good to get it out in the open...we laughed, cried, but it was healing...a new beginning to go back to where we once were, or close. I have thought about trying to get a ride, but to be honest, it is 75 miles each way, and then 6-7 hours there makes for a long day for anyone. But if it really stays an issue, I will do whatever to get there.
I agree that the chemo can takes its toll, and things seem worse when we are not up to par, and cancer seems to rob us of our old selves. We need time to talk, laugh, cry,reconnect, as we did, it was good, we shared our fears, our dreams, it was almost like cancer had no right for that day...if only all could be like that. I know Michael worries, but men don't always put things in perspective, and we as women tend to read more into things. Yesterday was good, it was healing. I need to remind myself that Michael lost a wife of 6 mos. to a car accident 18 years ago... maybe old wounds are reopening in all of this.Again thank you all for all your wisdom, support, and love ...you have helped me see things in a different life, and understand the caregivers side....I also realize, that chemo can not only change your body, hair, etc, it can change your mood...and reactions to things. I feel like this is a new beginning of understanding, dedication and love.
Thank You All

[Mary Jo]

Hi Sheila,
I was happy to hear from you this morning and happy to hear you and your husband were able to reconnect this weekend and talk about all that's on your hearts.

Cancer is a tough disease in more ways than one. I always say the physical aspect of cancer is easy. It's the other stuff - emotional and psycological that is so damn tough. Look how it's affected all of us - for better and for worse - it's got to affect those we love and those who love us the exact same way. Maybe even more so. The thought of our loved ones "losing" us has to be awful. I always say, I'm glad it's me who had to go through this as I believe it is easier than watching my husband have to go through it - knowing there is nothing I can do to "take it away - and facing the prospect of "losing" him. Marie could better speak to that as that is the situation she is in.

Often times, 2 years out, I feel sorry for my husband too. He's been such a rock to me - always supportive and loving. Sometimes it's all I talk about is cancer. I mentor many women so it's a daily part of my life - OUR life - and I often think - "Oh this poor man............this surely isn't what he bargained for 29 years ago........" then again, did any of us???????????

Well, I'll stop rambling Sheila. Just wanted to say (QUITE A LONG VERSION) that I'm happy you and your husband had that time this weekend. I pray God's peace to settle around you both and for His compassion and love to occupy both your hearts.

Love to you dear "sister"

Mary Jo
Romans 8:28

[tousled1]

Sheila,

I was so happy to read your post today. I'm glad that you and Michael had the opportunity to spend time together and talk. Being a caregiver is very difficult. I lost my son to leukemia at age 36 in 2002 and your post made me realize jsut how difficult it was on me while he was going through his treatment. The hardest thing for Michael must be the fear of losing you -- you have been so strong through all of this. I know that the both of you will weather this storm and come out stronger than ever. You're in my prayers.

[lexigirl]

Sheila,

I was happy too, to read your updated post this am. You are so beautiful, inside and out. I am sure he fears losing you; his best friend. It's hard to focus on your partners needs sometimes when you are fighting to stay strong and healthy enough to go through txs.

When I was first diagnosed, my husband was so attentive and really took total care of me and the kids. Once I started on my chemo and feeling stronger, like I maybe had a chance to survive this, he started to get back to his old self. He needed me to take care of him like I always did before. And it was okay. It was good and I felt good be able to take care of him and the kids. I am rambling now LOL. Anyway, I guess I am just trying to say that even though we may be going through yucky stuff, our husbands still want to be babied and loved on and made to feel special. Sometimes it feels like work, but I guess I wouldn't want it any other way.

Be good to yourself and know that we think you are AWESOME.

Hugs,
Lexi

[Believe51]

I read your post early this morning and decided to ponder a bit before replying. You sure have had your unfair share of 'bumps' this year. I can totally relate to the feelings of loss with breast cancer, we have sold a motorcycle and car, both which we loved. Back to that 'Pride in your Ride' thing, we spent so much time washing, waxing, buffing these great loves in the past, now they are gone. It is a constant reminder of how cancer robbed us. Material things I can live without, just sad needing a motorcycle ride and it is a closed chapter in our lives. The lives that once was.

We have lost some family and friends during our journey with cancer, another painful reminder of that robbery. I have mourned in my own way for these giant losses in our lives. Some people just cannot understand or they cannot relate. These issues bother me because I cannot live without my 'peeps'. Again, another closed chapter. Some of these Loves in my life just do not or cannot join this journey, for their own reasons and for our protection with some. There is still a gap in our hearts.

For you My Sweet, I do not think this is the case. Your husband has been on this journey in his own right and I know that you have recognized this. I cannot speak for your dear husband from what I know of him, but I do know he loves you. Cancer is such a thief, it steals from you when you are looking the other way or if you are sleeping. Seems that some days I wake up and realize that something else is gone. As for your dear hubby, could it be that he is tired of seeing this thievery? Could it be his way of dealing with the fact that after all this time, cancer is still robbing you both? Is it getting harder to see this journey take place, to steal from his Sheila? I know the vacation days getting eatin' up may just be a physical reminder to him, maybe just an added aggrevation. I just cannot see him getting frustrated with you and your illness, even though I do know it does happen. Tell your darling man what you need, Sheila, continue to let him know. I feel helpless; sometimes more than others and with my husband telling me what he needs allows me to not only provide it to him, I am able use my 'magic caregiving abilities' to my best advantage ('cause 'ya know I pick and choose my fights!! LOL).

Being a 'professional seasoned caregiver' (LOL) per previous conversations telling me so...I have endured 'The Other Side Of Cancer' and it too is unpretty. I think the things that helped me on this journey most was being here. Perhaps he needs a little guidance because I know it is hard standing here watching My Love fight for his petition for time. Your husband lives with his own tough feelings of watching and living through his wife's breast cancer. Do him a favor....give him a big hug and kiss. Do something special together when you are feeling up to par.

It comes to my great relief that there are services I could utilize in case I needed him to get somewhere without me. I am blessed enough to have a boss who allows me to work around things so I can go to all appointments with him. Things are getting rough here, all the more reason to be with him but I am happy to see all of the resources for rides. I have these lines up just in case something happens to me, I always have a back-up plan. Just check into it as an option to lighten his load and to save vacation days for better adventures.

Remember this Sheila: You are a beautiful Angel who has inspired us through our battle with breast cancer. My husband and I have found peace and love from you through our fight. You have a wonderful sense of humor and have brought so much laughter to our lives, laughter that has saved our lives. You are always close to heart and in our daily prayers. We are enriched by loving you and very blessed to have you in our lives. Anyone who knows you has to feel how special you are too. I cannot believe for one minute that there is anyone that could not feel the same way as my husband and I do. We love you so. Hang in there Lovey. And remember this too, I cannot wait to meet you, I yearn for a hug. When you are up to it...chocolate martini's, scream rides, and pool or bowling!! LOL

Believe51

[hutchibk]

Wow - this is a powerful thread. Thanks for sharing, Sheila. And thanks to everyone for sharing, too. I worry daily about my better half. I know this takes it's toll on him. I cannot imagine being in his shoes. It breaks my heart knowing that this disease is breaking his heart and scaring him. I am not nearly as afraid of what I am facing as he is of what it might mean he has to face. I know that men, fundamentally, are fixers - and they can become tremendously frustrated with a problem they can't fix. They tend to "throw the baby out with the bathwater" if they can't come up with a solution. Well, this is one case where they can't fix the problem. I know that it just devastates Mark that he can't make this better. Reverse it. Fix it. I suppose Michael must feel the same, and perhaps that is why he is becoming remote at times. I know he is not truly indifferent to you. He loves you with all his heart. He probably just has to go emotionally dormant at times, numb. Mark does it a bit, too. It is a coping mechanism. Not a comforting one, mind you, but it is one way that they cope. I have mentioned to him that there are "well-partner" support groups that he can attend, and from time to time he seems interested. But I think when he is on the cusp of going to one, it makes it all seem too real, and he prefers to live with a certain level of denial. I suppose that's only natural for all of us. I am so glad that you two had some quality time... just crying it out together from time to time can be extremely theraputic and healing.

[StephN]

Today I received a great quote from a old friend from high school who normally sends really funny jokes.

"Be kinder than necessary, for everyone you meet is

fighting some kind of battle."



Guess we need to remember that goes for members of our households and spouses. This is a really hard thing for us to remember when we are so focused on getting our own things done with such lack of energy and stamina. I am guilty of being short and crabby and not listening to my husband when I give myself over to the fatigue and pain.

Sheila, I am glad the the tension seems to have broken between you and Michael. The old cliche "it takes two to tango" really does apply. And I am sure you would rather be dancing a tango than getting the cold shoulder.

Yesterday we made a good start on our annual garage cleaning out after a long visit with my dad. That felt very good to both of us and we did not argue about what to get rid of and how to rearrange some things. Hubby was more agreeable than other times and let go of some things he would not in the past. I remembered to thank him for being so helpful.

[StillHere]

Sheila, just wanted to let you know that I am happy and relieved to hear things are getting better. Hang in there. Karen

[chrisy]

Sheila, I'm glad to hear that you had a chance to regain some of the old normal, laugh, and talk about these issues. Sometimes just putting it out there and giving them air can really help.
Keep your chin up - if you can after getting all "calm" by finishing all those things you started!

love
Chris

[IRENE FROM TAMPA]

That you and your hubby had a better day yesterday.

Sheila - I know exactly what you speak of and what you are feeling.

My sig. other and I just came through very similar situation. He became very distant with me, became depressed and we are currently going to a therapist to try to help us. The therapist mentioned that I am handling things better and I am the one with the cancer. As men do, they keep their feelings inside, unlike us women who can handle situations differently - Venus & Mars you know....

He has dealt with my illness for so many years and has been there for me but this life with cancer is like a yo-yo and I guess it started taking a toll on him. He feels he can not "save" me and is torn up with this thought.
I told him he did not "need" to save me, just be there for me. I guess with so much emphasis on my illness, I am sure that he felt tossed aside. He has never said this but I need to start considering him more. We are doing much better and I am incouraging him to "talk" to me more about his feelings. I was also going to check on finding him a support group for caregivers, which might help him to speak to others in the same situation.

Sheila - sorry for going on so long but I just wanted to share my story with you in hopes that you will feel a little bit better in knowing that you are not alone and that this WILL get better for you and your hubby. Just in what you both did yesterday, laughing, crying and talking TOGETHER is the road back for you both. To reconnect..... I am reading a book at the moment which talks about how different men are then women and how they perceive things in their lives. Boy, we have our work cut out for us.. lol :)

Email me any time you wish to just chat. I am very good at listening my friend.

Take care and hope thinks continue to get better for you both. AND IT WILL.

[madubois63]

Sheila - You've gotten some AMAZING advise, but let me add that you can call CancerCare too. They have volunteers that will drive you. One person can drive you, and one person can pick you up. Please don't feel like a burden to everyone. When you get better, you can volunteer and help someone else. When I first got sick and had to leave my job, money was nearly non-existent. Christmas was so sad for me, but a local church came through and brought us presents and food. Another organization bought coats for my kids and more presents. I cried and cried because I felt like I was taking advantage. Then I remembered that I have given to so many organizations over the years, and this was my pay back. I had danced for 24 hours, walked miles and miles for this or that and even stayed awake for nearly a week (I did hallucinate) to raise money for battered women. Right now, I just do little things as pay back. If someone needs a dollar, I give. If a woman walking with four kids needs a ride, I drive her. If a newbie writes me in the middle of the night, I call her. You need to do this one thing to help your husband and yourself. When you were driving yourself, it was easier for your husband to forget (or put aside) the thoughts of loosing you. Watching it must be horrible. And this past weekend was very important. You have to make the effort to put cancer on the back burner for a few hours and be people. I am so glad you had that time! Make more of it. Please remember cancer HATES the sound of laughter.

[Mary Anne in TX]

What a powerful thread! Thanks Sheila, for your honesty & willingness to begin it! And it's great news to see that you two have turned this thing around! Warrior power!

I sure do think cancer is about losing things....like breasts, security, hair, energy, some friends, etc.
But, I've lost some really great things too.....like:
the need to try to please everyone
the desire to be like everyone else
the fear of my family not being there for me (this was huge!)
the desire to have things others have
trying to do it all...thinking everything is My Job!
believing house work comes first
and thinking cancer is the worst thing...I've decided I'm really a very lucky girl (I think that's easier for me to say cause I'm 62 OR maybe cause cancer has made me finally grow up for real!)
I think for me the bestest thing about cancer has been learning to celebrate every single day and all the small wonderful things God put in this ol' world...most of all people like all of you!
I'm working to lose some more stuff this week...I still slip into the control stuff/having to know what's coming. Gotta get that one licked. It sure can rob me of the Good Stuff!
Not having any alcohol to finish (family FULL of alcoholics) yesterday I found a way to make having chocolate brownie for dessert a way to "finish" my lunch!
Love to all, mary anne

[TriciaK]

I read all of this thread for the first time tonight, and it has been so very touching. Sheila, I have found all your posts to be outstanding---your wonderful personality really comes through. Truly you are an Amazon warrior! You have gotten such wonderful, empathetic responses from everyone. I hope you know how loved and appreciated you are by all of us on this website. I have just one thing to add: One of the biggest differences between men and women is that men have an innate need to "fix it". They especially feel that they should be able to solve all the needs and problems of the one they love most and feel most responsible for, their wives or their significant other. When these problems are as difficult and demanding as fighting cancer is, a man feels totally helpless and frustrated, as if he is failing as a man. A frustrated, helpless man is often an angry man. One of the best ways to deal with this is to empathize with him by using feeling words, such as "Are you feeling frustrated and helpless because you can't fix this or solve this problem for me?" And let him know you don't expect or need him to fix it or solve it---just to listen and be there and empathise. My husband is a psychologist, and he has expressed this feeling of helplessness about not being able to "fix" my health problems. Even though we both understand his frustration, it is still there and he needs reassurance from me that it's okay, that I appreciate his wanting to solve my problems, but I don't need fixing as much as I need his love and support. I don't know if this is helpful to you, but it does sound as if you two have finally been able to share some feelings. True communication is on a feeling level, heart to heart and spiriit to spirit. This kind of communication comes more naturally to a woman, because men are often more left brained and logical. But they can learn to share on a feeling level, and a wise woman can gently teach him how to do this by being patient, loving and appreciative. Not always easy when you are fighting cancer! Thank you for sharing so much of yourself on this website--I know everyone who has read this post and others you've shared has felt of your strong spirit and is praying for you! Hugs, Tricia

[hutchibk]

Tricia - I just love your posts... please drop your wisdom on us more often. I am always so interested when I see that you have responded!

Of course, I am interested to read everyone's posts, but Tricia doesn't grace us as often with her wisdom... and I love to read her perspective.