working while going through treatment- male input requested

AliciaB · 06-06-2012, 06:31 AM

Yesterday, Tuesday, was chemo #4 out of 6. Yippeee. So I know that I will be on my backside Thursday through Sunday. Today, Wednesday, I will have some energy.

During past chemo treatments I would normally work the day after chemo for half to 3/4 of the day. Today I don't want to. I wan to take care of my self by reading,catching up on my blog, maybe go for a talk. For some reason this irritates my husband. He cannot understand why I am not going in to work today. When I explained was going to take care of myself today and described what that looks like- he said well that's what you do when you don't go into work when yo are feeling bad.

Why does everyone want me to to work? I work for the USDA and had paid shared leave. So we do not have an issue with loss of income. On the weeks i do not receive chemo therapy I work between 1-4 hours a day. Is it jealousy? Is it our work ethic? It makes me rather angry when he questions me. I am up at 6 am to get him and our 2 year old out the door for school/work, so I am not lazy sleeping in bed all day. Arggh!

Any insight would be appreciated, especially from husbands supporting their BC wives.

Alicia

snolan · 06-06-2012, 07:18 AM

I'm guessing he doesn't want to accept that this whole process has changed your lives. If your work schedule stays normal then life is normal. It may also be his way of trying not to let the chemo schedule appear to be taking its toll on you. He may feel that by pushing you to stay on your normal schedule that he is supporting your fight not to give up. Taking a day off to him may seem like your giving in (which we know is not the case).
We try to put on a stong face when we go through this process and some see that as everything is fine and normal, but we know that not to be the case. I always tried to be patient with my husband, realizing he is going through this with just as much pain and fear as I am but no one really knows what we go through but ourselves.
Take your days off and enjoy you need not only rest but a way to clear your mind to help you stay focused on the journey ahead.

After going through this process my husbands only complaint was that he felt left out when people would ask how I was doing. He felt no one ever wanted to know how he was doing and coping with his emotions. He had to take the back seat to me. Just try to talk it out, you both are going through a tough time in your lives communication is the best resolution.
Suzanne

MJsHusband · 06-06-2012, 08:15 AM

I agree with Suzanne's words. He likely wants to hold on to normalcy as long as possible and not feel like you are "giving in" to the bc in any way. I have the opposite issue. MJ will not slow down and she is stage 4 with a second metastasis already. She flies from D.C. to Ohio every other week for work(works from home the other weeks). She hates to miss the gym, even though she has thrown up on her last two workouts. She just finished her 3rd cycle of Xeloda/Tykerb(one more to go) and feels like crap all the time, but..... she won't take a break or slow down. She may be thinking along the same lines as your husband, that she can't give into it at all and needs to keep living a "normal" life.

Anyway, that's my 2 cents from a male caregiver perspective. I hope you can take a break from work and your husband can come to understand your need for this.

~Greg

rhondalea · 06-06-2012, 08:29 AM

When I told my husband I had breast cancer, the look on his face was indescribable, but I knew what it meant. I looked him in the eye and told him, "I said 'cancer," dear, not 'casket.' Don't worry, I'll still be here to change your diapers when you're old and feeble."

He is beginning to accept now that I might just live through this experience, even though he previously expected me to drop dead at any moment. In between, though, you'd have thought he was an Egyptian on a sinking houseboat--he just couldn't deal with my cancer, and reminders of it made him extremely tense and touchy. This is not to say he wasn't helpful--he did whatever I needed him to do without complaint--but just that he didn't want to think about why he was helping me.

I tell you this because it seems to me that your husband is going through something similar. Men are fixers--it's one of their biggest conflicts with women, because they don't want to talk about problems, they just want to solve them and move on. Unfortunately, your husband cannot fix this. He's helpless in the face of a fickle universe that has inflicted a dire curse upon his family. Still, he needs to believe you'll be okay, and any deviation from "normal" probably sends him spiraling down the cascade of consequences that will occur if you're not okay.

Talking it out isn't likely to give him any relief (see above). For his peace of mind, backing away from the subject when it comes up (most usually in the form of a snarky remark) is probably the best course. That's not going to be very emotionally satisfying for you, but it will help if you can look at it as a loving gift to one whose entire world has reversed its poles.

Just don't think you have to drag your dead butt into work on your one good day to please him. You need your rest and as many pleasant moments as you can cram into the days when you're feeling well. Even the best jobs are stressful, and avoiding stress is an important part of what you need to heal quickly. (And in a non-tense moment, you might want to point this out to him, albeit, gently.)

Hang in there. It really does get better.

AliciaB · 06-06-2012, 09:11 AM

Thank you for the insights. My husband is very supportive- he even went with me to.get my prosthetics yesterday. But yes,I think he gets concerned about normal life. He is concerned about finances. He is frustrated that no asks how he is coping. He has made remarks such as " I talked to Joe. He wanted to know all about how you were doing. As a sisde note at the end of our conversation he asked how I was". I know this bothers him. I guess I am also looking for ways to help him as well. He is not interestes in counselling. I have given him the website "menagainstbteastcancer". I also really try to let him engage in all of his extracurricular activities-singing Barbershop, shooting rifles, gardening and yardwork How do I help him? I think BC is having more of an effect than I will admit since all side effects are being effectively managed, also the cancer has not spread beyond the lymph nodes ( pray that it stays that way)Any insights to help my wonderful loving husband would be great. I love this forum. Alicia

Kellennea · 06-06-2012, 12:07 PM

Alicia -

I worked all through treatment (chemo/herceptin and radiation). It wasnt my first choice, but my husband pointed out that we needed to maintain our lives, that I shouldnt give in to cancer and treatment. After hearing that, I felt like if I stayed home I would have too much time to think... so, off I went.

Some mornings, I would stand in the bathroom, fresh out of the shower and cry my eyes out and almost give in to the bed or the couch, or my bathroom floor.

I would have treatment on Thursdays and be back to work on Mondays, until around my 5th of 6 treatments, I had to take Monday off and probably should have thrown Tuesday in there as well. I scheduled radiation for 7:30 am and went to work right afterwards.

Looking back (a little over a year now), I am glad that I went to work and pushed myself that extra little bit, but I believe that we all know how much we can handle. I say if you need a day -TAKE IT!!! you totally deserve it

1rarebird · 06-06-2012, 01:25 PM

Alicia-
I can't really offer useful advice on how to approach your husband's difficulty understanding the very rough road you are traveling as you fight your breast cancer. But as a male who has traveled that same road, I can certainly empathize with what you are going through and attest that anyone of us would gladly do the other hard things in life, like going to work, when we feel so awful. I think we all would trade any day at the office for one of the nauseated, listless days we had or have to go through during our treatments. Sometimes you wish others could be in your shoes for just a little while so they would have a better understanding. But I suspect you already know that at this forum we all understand your situation and wish only the best for you. Good luck to both you and your husband.--bird

Rolepaul · 06-06-2012, 01:52 PM

From a hubby,
This disease is like you have taken on a lover to your husband. You probably want a little quiet time, you no longer can bring in the income you did, and I am sure that you do not feel as pretty as you once did. It did take a while to understand that it was not Nina's fault, and she did not want to be in this situation. There are those that can do the right thing from day one, those like most of us that are as angry about this as our spouses are and just need a bit to work it out, and those men that just decide to move on. I would get some counseling to be able to listen to his concerns and for him to hear the effect of his behavior. Nina and I were ready to walk away from one another. This last scare has actually made us closer, despite being 1200 miles away most of the time. I would recommend that you two set up date nights for those times you feel better, and I have the flu nights when you are chemo'd. I would ask that you not withdraw, but include hime in those parts of the recovery. You might be surprised at the results. Your are retty, intelligent, and motivated (as noted by getting treatment). You just need to let him know that this is a temp change in many ways, but that there will be permanent changes in others.

CoolBreeze · 06-08-2012, 06:44 PM

RolePaul, I think she said her income wasn't changed.

But, Alicia, you said "Why does everyone want me to to work?" Who is everyone? Is it just your husband or more than that?

If it's just your husband but you said "everyone" than I think you may be giving his statements too much weight. If many people have said it, then maybe you need to look deeper.

Yes, you should always listen to your husband, but this is the one time in your life where you need to do what is good for you no matter what anybody else thinks. If you are still making the same amount, and you want to take a day off because you don't feel good, or just want to relax and heal, it's not his business. It really isn't, married or not. You are living your own life too.

If it changes your income then it is his business - if it affects your finances, then you need to have a talk. But if I read your post right, it isn't.

Everybody reacts differently to chemo. I've been on it for three years straight and worked through it. I have finally come to the realization that I can't work anymore. I am leaving my job June 30th and going on terminal illness leave. But, I LOVE my job and I know most people don't. And, going into a place that isn't special to a job that is stressful may not help you heal.

I disagree with rolepaul that you need to get counseling to learn to listen to his concerns or include him in recovery. You have cancer and chemo. No counseling will ever get him to understand what you are going through. This is the one time you shouldn't have to baby him and walk him through something. It's CANCER. He either gets it or he doesn't.

My husband would never tell me I shouldn't take time off work after going through what I've gone through - even at the early stages when I was like you. He let me make that decision. I can only imagine that like the other women have said, he is afraid of his safe and secure life being changed, more than he's worried about your health and needs.

If he's a reader, than I would get him this book: http://www.amazon.com/Breast-Cancer-.../dp/1579548334

Good luck.

Vicki revised · 06-08-2012, 07:40 PM

Here's my take: hubby may perceive Alicia not feeling like going to work as an indication of a decline in her condition and that's what upsetting him. It isn't about work per se at all.

Debbie L. · 06-09-2012, 06:55 AM

I don't really have anything to add to this discussion (so many wise words), except to say that just because some partners don't say things like "no one ever asks how I'm doing", it doesn't mean they don't have the same feelings as those who do talk about it. I take it as a good thing that some are able to talk about how it is for them, this experience of breast cancer. This experience that hits the whole family.

Being the caregiver is such hard work, on so many fronts. I hope that when going thru hard times as couples, we can try to take things less personally, and cut each other a lot of slack. For some couples, getting thru illness can deepen the relationship and for others, not so much. That's just how it is. If everything else in a relationship is and always has been decent, then it seems reasonable to me that if the partner is unable to offer the support we need, we find that support elsewhere and see if we can tough it out. And we try to make sure they have access to support, also.

I say the above from a little different perspective. I'm an obstetrics nurse and I've participated on the periphery of so many births, and seen so many different couple-dynamics. There are some wonderful spouses who just don't or can't "do" the medical stuff. For various reasons, and the reasons probably aren't important. What seems to work the best in these instances is that both partners recognize the reality, and the birthing partner finds others to support her in the medical parts of birthing while still including the partner in everything else. With as little judgment or guilt in the mix as possible.

This does not apply, or course, when the partner is just a total self-centered jerk who has maybe been borderline all along and the challenge of illness brings out the worst. I'm not trying to be an apologist for unloving and unsupportive partners. But especially in a young family, for whom perhaps breast cancer is the first challenge they've faced together -- this is a steep learning curve! It's too bad there aren't more things in place to support families -- something like a "couples' night out" support group, or other caregiver resources, especially for those of us in the boonies. Books can help sometimes, but the "here's my story" ones can sometimes be MORE isolating, not less -- because we all react so differently.

Sorry, that was quite a bit of "nothing to add" (smile). I was going to go back and delete that but it's kind of funny.

Debbie Laxague

Lori R · 06-09-2012, 07:52 AM

Alecia,
So many wise words, so I thought I would select a few that resonated with me.

*Rolepaul's comment about taking on a lover named cancer. I agree...I have Friday afternoon dates (chemo treatment), I think about him constantly, I schedule vacations around him. It is perfectly normal for our spouses to be jealous of the time and emotions we devote. Even though we rationally know that we have not asked for this lover to enter our lives. Rolepaul, your comment will help me be more sensitive to my wonderful care giving husband. Just an interesting perspective.

*Working - sometimes we all need a breather. So I encourage you to take the time you need. However, I have worked through 4 (or is it 5) rounds of chemo. In my case, it is a good thing. Work forces me at times to get up, get dressed, break the cycle of negative thoughts. I do think that if you feel physically up to it, the social interaction provided at work is incredibly helpful.

Kellennea- I thought I was the only one that cried my eyes out in the shower and also thought about just sitting down on the bathroom floor for some more tears. Thank you for sharing your sad moments as there are others with the exact same emotions.

Finally, Alecia...I do encourage you to consider counseling with your husband. I went with my husband a couple times a month for 3 months. It set aside time to share feelings. (which is easily overlooked in our busy day to day lives) There was a little anger and having a third party moderate was very effective. As a side note, the counseling even helped us through some old, lingering issues that had nothing to do with cancer. Why, why didn't I do this earlier???

I hope you have found eveyone's input insightful.

Lori

AliciaB · 06-11-2012, 04:12 PM

Thank you for you input. In the beginning of my journey, Mom Dad, husband and one sister kept asking me if I was going in to work. This was right after surgery and drains were removed. I really don't know what their agenda was. If I had to guess, it was to prevent me from slipping into depression.

My husband will not go to counseling. Yes, we have done it in the past, but he is not interested right now. On the other hand, I attend counseling 1-2 times a week, which has been very helpful. I believe that my husband is concerned about depression and maybe about a predictable schedule. He was wonderful this past weekend (the one right after chemo)- cleaning house, taking care of our son, making meals, doing lawn work- all the while I was sleeping/resting.

I like the concept of cancer as a lover- it is very true, yet i don't find it an attractive lover. Cancerland can be so all consuming that it is difficult to step outside. I don't think I give enough credit to the impact that cancer has on my life. I tend to dismiss it in days that I am not sitting listlessly on the couch staring into space.

I think I will take each day as it comes. Work when I want/can and take off when i need /want to. I really want to heal physically and emotionally from this. I think the only way that i can is to truly discern what I want and need each day.