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Lovekitties's picture
Lovekitties
Posts: 3322
Joined: Jan 2010

I have started this as a new thread to make sure you see it, since it refers to something you posted in another thread.

You mention that your husband is in treatment ( I assume chemo) and that his moods are volital and erratic.

It is possible he is getting a steroid with his chemo.  This may be a part of his control issues.

Bring this up with the onc, either in a phone call or at the next visit.  If he is getting a steroid they may be able to reduce the dosage.

Marie who loves kitties

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Hi Linda

Is he doing Folfiri by chance?  That drug combined with the Dexemethasone turned me into a Dr. Jekyll & Mr. Hyde....

Your story made my heart ache.....I found so much that resonated with me this morning....what got to me the most was that it had some similarities to what me and wife have gone through. 

My wife would absolutely get what you are saying....though I stayed active on the job every minute I could....minus surgeries and recovery time.  I had to leave work 5 times during those years, but returned the very second that I could.

I will preface this by telling you that she was a strong caregiver through 8 very tough years of 3x with cancer for me...

It all started out with the physical....which is hard enough on a woman - but strangely it is difficult for the man to lose his role and end up on the reverse side....so keep that in mind too:)

Wives do get tired of the nurse role....I heard that many a time...and I heard much worse....like "hurry up and just die..." Much of it said in the heat of the moment....still the sting never leaves you.

What has really turned the table for you is the role play you find yourself in right now - and having your husband come to you now in this clingy, needy emotional role that neither of you are familiar with - but find yourselves currently drowning in. 

It's very easy at this point for Bitterness and Anger, and even Resentment to move in on your lives and replace alot of those early on good feelings.

What's really happening?

Well, you were thrust into a role that you never thought you'd have to play - and hubby finds himself now in a less than manlier role than he ever figured on too.  Men are typically not very good patients....and I know we tend to whine to our loved ones when we feel bad.  I think alot of it ties back to how we were treated by our own mothers when we were very young.

If we weren't nutured, I think when we get incapacitated, that we shift that emotional weight that we never got over to the spouse by default... in essence, we secretly long for that, which we never got growing up....especially early on in the formative years, where those molds are cast that we carry with us through our journey towards manhood.

I think we also do it, because there is a great deal of fear inside and as men, we are programmed from birth not to show fear or hesitation etc.  Equally important, is the fact that there is this newfound feeling of Insecurity that has moved in on our insides and now this feeling manifests itself outwards towards the only person, whom we feel intimate enough to try and express what we feel or think. 

From the male perspective, losing that illusion of control, can have some devastating effects all the way around...

Now, here's the other side....and it's a little tough love for your husband....(spoken from a man who has been there nearly 9-years with my caregiver also at 9-years)

If hubby is not really careful....he's going to push you past the brink...and over the edge. How much time that will take is still TBD. 

The first thing that I would tell him is to use that time wisely and not indiscriminately....another words, only lean on you when he really has to...not just eat away at you everyday over things where the priorities are not as high. 

You see, right now, you're like a candle that is burning at both ends....and while you burn twice as bright....you also burn in twice the time.....the flame is that hot.

You know what I mean?

I can tell you that sometimes we want to be babied....and there is a time and place for that....but as men, we still have to do what we can to alleviate as much burden as we can from our caregiver...this race can be a very long one.....as I said, my wife went close to 9-years in an On Again - Off Again type of cancer fight.

It can wear you down to the nub.....

As we were wrapping up our last fight, (2-weeks before my last infusion was to be over - the fight was winding down).....she couldn't take it anymore....but think about 8-years worth of this....that's doing some hard time on The Rock for sure.   She told me one night when she got into from work that she wanted a divorce.

And then these words.....(which have always stayed with me)...

She said...."I'm emotionally bankrupt..."

She subseuently stayed and we have been busy mopping up the spills from all of the leftover carnage. 

We don't know how long or how many times we are going to have to fight....so we have to be sparing and not shoot every emotional bullet that we feel we have....we have to play for the long run....'cause in the end, it might take a great deal more time than any of us ever figured. 

In the beginning, I thought I would do it one time - and then have a great story to tell.....I never knew that I would get cancer 3x in 8-years......almost at the 9-year mark in about 3-weeks.

And I'll close with this, Linda....I saw this on another post and this is a good opportunity for me to address this....

If I remember correctly, you were looking for a Stage II? 

Well, I'm your huckleberry:)

I was a Stage IIb.....but have been a metastatic stage IV for the past five years or so.....

My story points to the fact that even at an early stage, things can get out of hand in a big way - and quickly......and it also speaks to the longevity that one can achieve, though it takes a combination of events to bring that to some kind of a realization. 

If he thinks he's got problems now - just imagine what he'd wake up to and have to face - without you there in his life.

If that doesn't sober him up - then nothing will......I almost lost it and would like to use my experience to help another couple with the things we've learned and experienced together with all that we've gone through. 

I wish you all the best going forward.

And just for you, I pulled this one out of my old archives....I used to use this one quite a bit in the early days...time to dust it back off.

Remember Aesop's Fables?  The one about the Tortoise & The Hare?

The race is not always won by the swiftest - rather, slow and steady steps can still get you to the finish line...

-Craig

jen2012
Posts: 1607
Joined: Aug 2012

I didn't catch Linda's post referred to...but found your post very enlightening Craig.  My husband is 3 weeks out from surgery and I'm biting my tongue - ALOT!  Thinking ok - I had 3 c-sections, came home in 3 days and took care of all of the kids - myself...get up and do something already!!  I'm not saying it, but I'm really tired....taking care of my hubby and chasing a toddler and being chauffeur to the teens and being on them to keep their priorities in order.  Plus we now have mice in the house - first time ever and I'm ready to start screaming.  

So are you giving me permission to start pushing him a little?

Linda - I didn't see your post, but I did notice that 2 days after he stopped the dex, he was quick to snap. Pair that with a teenage girl in the house and it hasn't been a fun few months here.

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Your life is very full right now (on a good day) and I can hear your controlled 'screams' in your words today...

If mice were in our house, I'd be peeling her off the ceiling too; I know one thing for certain...if there is one...then there is more than one, unfortunately.

Who you gonna' call? 

:)

There is a Billy the Exterminator show out on A & E:)   Okay, I was just trying to gig you into a grin....sounds like a call to the exterminators might be in short order.

I think you'll know when the 'time' is for hubby:) 

I know at the end for me, I wasn't even good to watch tv with....I'd have to take long naps (4-6 hrs) just to try and watch about an hour of tv...and even though, I was just a zombie with zero interaction with her.

I tried to stay hidden up in the guest room, out of her way...but sometimes, you would surface for something...and then have an 'exchange' etc. I was pretty beat up at the end though...

It does take 2 though....I've seen it in my recovery the past 2-years...we're busy kickin' *** every second...but to her...how do I say this? 

You don't do a dam thing!

Of course, she knows I'm working on it, but in a more limited capacity than the way I used to shovel the hash in the past. 

I know it's her frustration boiling over and out that we just can't magically turn it around in a couple of weekends.....but, it didn't come unglued over night...and spackling it will take a similar amount of time and effort.  Of course, that's where the frustration begins and ends...for both parties.

You throw Time and Money at things....but what you really need are numbers...it takes an Army to run a household. 

I'm sorry you're having to bear the brunt of things right now...I hope it will lessen as time moves on.  All of you caregivers have my utmost respect for what you do.  I don't think I could ever do the job that you are all doing in the way that you all are doing it.

Hold on, Jen!

jen2012
Posts: 1607
Joined: Aug 2012

I felt really good about catching mama mouse and releasing her at the local wooded pond...then papa the next day...then the tripletts for the next three days and im starting to freak out a bit. Now we have genius mice left who steal the cracker and keep moving. Ugh!
Just so i dont sound completely heartless...im not expecting him to paint the house or anything...but when he calls me down stairs to get the remote that is 6 inches away...its hard not to roll my eyes!

Chelsea71
Posts: 1170
Joined: Sep 2012

Yeah, it might be time to light a fire under his butt. He will likely thank you for it later. Once he starts to become more active and productive around the house, he will start to feel better.

Those genius mice can be tricky buggers. Just what you need, a new hobby. I'm sure you want to be catching mice with all the spare time that you have. Hopefully it won't interfere too much with watching tv and taking long bubble baths. Lol. Good luck with it all.

Chelsea

AnnLouise's picture
AnnLouise
Posts: 276
Joined: Mar 2013

Why when you are pushed to your limit, does an appliance break or some pesty things invade? I remember I had a son in intensive care, a second one got hit by a car on his bike, a 4 month old baby and my 5 and 7 year olds came home with lice. I stayed strong through everything but the lice put me over the edge! Your mice story just reminded me of that time in my life. A non cancer story! ~ Ann

LindaK.
Posts: 490
Joined: Apr 2013

Hello Jen, I had posted in the Caregivers board about my husband being angry.  I enjoy reading other people's stories and try to find something to learn from all of you.  It breaks my heart that we are all here in Cancerville.  Our girls are grown and married so I can't imagine having kids at home which keep you busy!  Throw in a few hormones of my own and some steroids - it's a recipe for disaster.  Although we are new to cancer, I have bit my lip on more than one occasion and will continue to think before opening my mouth.  I cannot even sigh or have a partial eye roll without him noticing.  I know it sucks for him, but he needs to realize all that everyone is doing for him and appreciate it.  Our daughter is a nurse, RN, which has been a life saver for me.  She has her own family, her own health issues (Rheumatoid Arthritis) and a new job to boot!  My husband is able to drive and mostly take care of himself.  He has been through a lot and I have to keep telling myself that.  I have gone to that selfish place wondering how it would be if the tables were reversed - I think I'd be in trouble!  We have some underlying issues which have been swept under the carpet for now.  I don't think there is any other way to survive than to do everything possible to fight.  When he was in the hospital (thankfully close to our home) he would tell me to sleep in a little but then call me at 6 am reminding me about something. 

I'm hoping we have turned a corner after talking to the oncologist yesterday and my husband seeing people getting treatments who are in much worse shape.  I really hate to complain, but after reading Craig's post, now I don't feel so bad.  I don't know how I would or will be after 8 or 9 years of this.  I have to work, I carry the health insurance, I can't be taking all this time off year after year.  I am just taking things one day at a time, just hoping this treatment will cure him, but realistically knowing it may not.

Good luck with the mice, sounds like you got them all.  We had 3 in our camper over the winter and I just found evidence they were in an oven mitt in a drawer - gross!

Linda

Chelsea71
Posts: 1170
Joined: Sep 2012

That was a very interesting post, Craig. Overall, Steve seems to cope very well, but he does have his moments. He can be difficult at times (Just him though, never me. Lol) and we do get frustrated with each other. It's been twelve years of u. colitis and two years (steady) of surgery/chemo. Many problems and complications along the way. It gets overwhelming at times. I'm not proud of it but I have had feelings of resentment towards him. Months ago, someone (we'll call him Lou) vented in a post that their wife had made comments, such as, "It's just one thing after another with you.". I felt really guilty reading that as I myself have had this thought a hundred times over the years. Don't get me wrong, I admire Steve tremendously for all he's overcome and the class with which he handles it all. Anyways, it was enlightening to hear the other perspective. Gives some insight into Steves feelings. Thanks.

LindaK.
Posts: 490
Joined: Apr 2013
♥♥♥  Oh, I feel the love here, I am sitting at work crying as I read your awesome post, as I know it comes from a place of love.  I will have to re-read this several times, but my first reaction is "Are you in my brain?"    I will respond more in a little while.  Thank you, thank you, thank you for sharing so many intimate details. 
 
Much love and thanks, 
 
Linda
LindaK.
Posts: 490
Joined: Apr 2013

Marie, THANK YOU for reaching out to me.  He started in January on Folfox, they took out the oxaliplatin after his severe constipation put him back in the hospital in late March - he had 5 full Folfox treatments.  Since then, he has had 3 treatments of just 5FU.  He gets a 2 hour leucovorin infusion in the office and they give him an anti-nausea drip also.  No more steroids.  He has had extreme joint pain and two treatments past they told him they could give him some steroids to help with the joint pain.  He said no because his blood sugars are extremely high when he gets that.  He is also diabetic.  His sugars had been in the high 400s even with meds and very low carb intake.  Yesterday after just the leucovorin and 5FU right before dinner his blood sugar was 149, much more manageable.  I'm thinking (and hoping) that was also making him act differently along with the steroids.  I have not seen the extreme mood swings the past few weeks. 

It's kind of strange many of our roles have reversed.  He was always the optimist and I was more pessimistic, that has reversed.  I have had to remain positive through this or I will just totally break down.  At the last treatment (and many time in between) I keep saying "We have to get through this to know we did everything we can so it won't come back" and he said "I know it's going to come back" which really rocked my world.  I had to leave for an hour or so to collect myself since he hates public displays of emotion.  I realize he may be right, but the odds are in his favor right now.

A couple things happened yesterday that I think have improved his outlook.  We had to go to a different location but we saw our regular oncologist.  He usually prefers one of the private rooms but none were available.  He saw some people in much worse shape than he currently is and I think it's finally hitting him that he's lucky compared to some.  We also had a long talk with the oncologist (who we love and gets along great with my husband) and he explained that due to the tumor size and content, he's considered high risk Stage II, which we may have heard before but didn't really understand what it meant.  He needs this chemo where some Stage II patients are not even recommended to have this regimen.  I also read some of the books there about caring for a loved one with cancer and read some of the signs of depression to him.  I asked him about alternative healing for things he could do when he's done with chemo.  I have a close friend who is a breast cancer survivor and deeply believes in taking control of your own body.  He may be open to some of those things.  I did ask about him taking D3 and the onc. said he didn't want him starting anything new right now.  We talked about these things on the way home and he seemed much more positive, so much better than our last treatment (in my opinion anyway).  We went back to our campground (where we live for the summer) and he didn't even mind being out on the golf cart talking to people with his pump pack on.  I think he likes the attention and I usually have to follow up with people telling them he is doing pretty good and the prognosis.  So many people hear "colon cancer" and think the worst. 

Thanks again for the suggestion, we are learning more each day - thanks to the generous people on this board!! 

Love, Linda

Lovekitties's picture
Lovekitties
Posts: 3322
Joined: Jan 2010

I am glad that things seem to have leveled out a bit.

A cancer diagnosis hits on so many fronts for the patient, caregiver and loved ones.

It would not hurt to check around for some type of counselor, either secular or faith-based, to reach out to in difficult moments.  The ups and downs of the treatments, tests, reversal of roles, the need for support both physical and emotional, can often be more than any person can handle alone.

I wish you and your hubby much success on all fronts.

Marie who loves kitties

 

 

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