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It's just too much.

alexinlv's picture
alexinlv
Posts: 194
Joined: Jul 2010

Hi everyone, I keep up most of the time reading your posts and praying for everyone who is going through the roller coaster of cancer.  it's been four years of my husbands stage iv fight.  Today I just need to Vent! 2 months ago my hubby had his second liver resection. Since then he just feels like crap! The past few weeks he's been sleeping a lot. He's moody and such low energy and really down on himself. To top it off, my father had a massive heart attack 8 days ago  and has been in ICU. I have been with him  while he is in the hospital. He lives with us. He is doing well and we expect him to come home soon.  thank you for listening. I'm trying not to go crazy! I know you all understand! Friends and family just can't understand like you all do. 

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

Sorry to hear about all of your stress, my dear!  Does his doctor know that he is still feeling poorly?

 

With your father, I am nursing a heart patient back to the living, myself!  It's amazing what medical care can do these days with heart attacks/bad hearts!

I'm sending big hugs for all.

 

Hugs, Kathi

alexinlv's picture
alexinlv
Posts: 194
Joined: Jul 2010

Thank you Kathi! He is in denial about feeling poorly. He hasn't told his dr.  he was supposed to have his liver stent out last week but we rescheduled because of my father's heart attack. if you don't mind, can you tell me more about your heart patient? I don't know what to expect.  He is having an angioplasty today.  XO

jen2012
Posts: 1607
Joined: Aug 2012

Oh these men!  So stubborn.   My husband does the same thing - I think they are afraid of telling the docs for fear that it is something to worry about.  I've taken to just emailing his onc or calling the surgeon's office when things aren't right.

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

We have been living with a dying heart for 20 years.  April, his cardiologist said "I have nothing more to do".

 

July 2, after a little more than 6 weeks on the transplant list, he received a new heart.  Now, 3 months later, he is a new man!  All recovered, and doing extremely well....

 

That said, through out experience, we have met many heart patients, and most all of them have responded completely to treatment.  Then, made lifestyle changes to support the 'new lease on life'.  A diet low in salt, cholesterol is big...and exercise...my beau goes 3 days a week (leaving now, in fact) to cardiac rehabilitation.

How did the angio go yesterday?  

Sorry it took me a day to respond....it was a 'my health' day....dentist, flu shot...napping...*smile*...

 

Hugs, Kathi

 

P.S.  Tell hubby that if HE doesn't call the doctor, you will!  "I love you very much, dear.  But I am VERY much stressing over your pain.  Even if YOU don't need to know what's going on, I DO!"  This has worked many times with me and my beau....

 

 

jen2012
Posts: 1607
Joined: Aug 2012

Hi Alex,

I'm sorry for all of your stress - you are right, we do understand   Weird how it seems like things happen at the same time.  

If I remember correctly you were trying to decide what to do about work.  Are you working?

I keep thinking I need a nice padded room to go and scream in every once in a while.   I hope you find something to relieve some of your stress - I know you want to try to stay strong for everyone and it just builds up...you need to find something to get rid of some of that stress. 

Do you have siblings that can come and help with dad once he comes home?

Hugs!

alexinlv's picture
alexinlv
Posts: 194
Joined: Jul 2010

Hi Jen, I have two older sisters who are my day's stepdaughters. They are not able to be caretakers as they can barely  take care of themselves.  As far as a padded room, I have screamed in the car before!  I am working, just not the past week though. Do you or anyone else out there get tired of people telling your how strong you are? I mean, I have no choice right?! I don't know why, but that is bugging me lately.  I just don't want to hear how strong I am When I'm going crazy on the inside and I'm always worrying about my husband! Then my crazy sister will say something stupid like how my husband is "going to be all better, isn't he?!" Like he has the flu.  Soooooo tired! Thanks for listening! 

jen2012
Posts: 1607
Joined: Aug 2012

I had one friend that kept saying how strong I was...I finally said no I'm actually a mess but you are not given any choices and you just go day to day. She never said it again. I think its meant as a complement but its a stupid comment. It just ducks ...hard to stay positive and hopeful. Especially when they aren't feeling well. If you find little chunks of time try to do something mindless...my latest is trashy books and bubble blaster games :)

Cathleen Mary
Posts: 827
Joined: May 2011

 

Life certainly gets complicated!  We, patients, can also get stubborn!  Would you be comfortable with letting his dr know?  It would be a shame if he is feeling 'crappy' unnecessarily.  

You have so much on your plate. Could anyone pinch hit for an afternoon? You count, too!  Vent all you want...wish we could give you some respite.

Thinking of you.

CM

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

I know there have been times when I've been a serious PITA as a patient.  All the surgery, the chemo, combined with the fear and anxiety...it just sucks for everyone involved.  Your husband has been through a lot and it sounds like he's just had it for the moment, both physically and mentally.  Surgery in particular always had a major impact on me, including my mood.  I think it may have some to do with being put under...it seems to affect a lot of people in a negative fashion.

I think you may need to "go over his head" and call the doc, see what they think. Has his blood been checked lately?  He could have some physical reason for feeling so crappy, like anemia.  You could also ask his doctor about rx-ing something for fatigue, like Adderall.  It's being prescribed a lot more for cancer patients now and it really gives them a much needed energy boost.  The doc may also want him to try an anti-depressant, although I personally feel a drug dealing with fatigue directly and in a fast-acting manner would be better.

Another possibility (if he's willing) would be to try some massage, which has been clinically proven to boost energy.  And it's very relaxing and mood-enhancing, at least imo!  And maybe you can get a massage too.  It's super important that you take care of yourself, as hard as it may be to find time for this.

When does he scan again?  Hopefully he'll get some good news at that point, and that might lift his spirits a bit.

Hugs coming to both of you~AA

Annabelle41415's picture
Annabelle41415
Posts: 6547
Joined: Feb 2009

Sorry that he has not been feeling well and if he doesn't tell his doctor, than you, as a caregiver, have the obligation to discuss things with him because he'll never know if your husband doesn't confront or be honest with him.  Sorry to hear about your father and hope that he will come through this with minor setbacks.  Please keep us posting as to all are doing, including yourself.

Kim

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Alex,

Oh I am so sorry that the difficult times are just piling up on you.  And, I know what you mean by the "You're so strong" thing.  I think sometimes people say that cuz they are trying to tell the "fates" that they are not strong and therefor don't bring this hard stuff down on them.  They think the "fates" have chosen us cuz we are strong.  I say bull.  We do what we have to do because we love our loved ones so much. 

I will keep you and your whole family in my prayers.  You are teaching right?  Me too.  It is hard but getting those hugs from the little ones lifts my spirits.  

I am thinking of you.

Aloha,

Kathleen

alexinlv's picture
alexinlv
Posts: 194
Joined: Jul 2010

Thank you all for the support and guidance.  We truly learn the meaning of one day at a time, right? I remember 4 years ago people would say take one day at a time and I would think, "whatever... I don't even know what that means! ". Now I truly understand one day at a time. My dad will have open heart surgery tomorrow - a triple bypass. Husband is feeling better today.  We'll see how it goes.  Praying for all of you and sending positive energy for a good day today.  Lots of love! 

tachilders's picture
tachilders
Posts: 313
Joined: Jun 2012

Not much advice as I too have been quite tired and a little down since I had my stent got clogged resulting in a new stent being placed in the old one and systemic infection with two different bacteria. Just now starting to feel better after 4-5 tough weeks. All I can say is I'm sorry for all your troubles and your husband will likely work out of this funk when he starts feeling better. I get a little cranky if my wife sometimes implies I'm not doing enough to get better. Best of luck with your dad and husband. You are certainly going through a lot right now. 

alexinlv's picture
alexinlv
Posts: 194
Joined: Jul 2010

My day's open heart surgery  went well.  He is still in surgical ICU. Monday will be two weeks since his heart attack.  I am with him everyday.

Meanwhile my husband is finally admitting that he doesn't feel well.  He had a 101+ fever last night. Today he is nauseous and feels like he is going to vomit and has abdominal pain. I'm really thinking its an infection from the bile duct stent. So if he has a fever tonight we are talking about getting him to his dr or ER at UCLA where he had his liver resections. Therefore, I need someone to cover for me and be with my dad in the hospital here.  All family is out of town but they can get here.  On top of it, I am really close to running out of family medical leave days which means I would have to take a year leave of absence.

Thank you for letting me vent.  I Just needed to get that off my chest. 

Please, I would love advice regarding my hubby. Do you think it sounds like an infection? Should we go right away? I think i know answers the answers. Just need to hear it from someone else.  Usually our gut instincts are right, huh?!? 

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

If you still need me to pitch in, I am in So Cal....by Riverside....

 

Where is your dad?  Would you like a breather?  Can I come help?  How is hubby today?

 

CAN I HELP???????

 

The only 'busy' day for me this week is Wednesday, I'm talking to High School classes about my career....

 

Hugs, Kathi

alexinlv's picture
alexinlv
Posts: 194
Joined: Jul 2010

That is the sweetest offer ever, Kathi! Made my day.  I'm in Las Vegas though. :)

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

But, to add....as a caregiver, YOU have rights to care information from your dad's doctor.

 

When my beau called to say that he was going to be discharged, I responded: "To where?  And to WHO?  Without someone giving me the complete rundown as to after-discharge care, I, certainly, will not sign the discharge papers, agreeing to take you home!!!!!"

 

More than likely, your dad will get better information than you, so you MUST be strong and ask questions!  He will be VERY sore from the chest incision, but also his back may bother him for quite some time (a rib spreader does just was the name implies, and puts stress on the back, where the ribs are attached).  He will more than likely get a small pillow to hold against his chest when he sneezes (the WORST, in my beau's opinion) and coughs.  They will have him up and walking either today, or tomorrow...and make sure he does his breathing exercises (funny looking thing that measures out pressure).  Drains coming from various places look scary, but will more than likely be removed before he is discharged.  Then the big thing is wound care, pain management, and resting!

 

Hugs, dearest....it WILL be good!!!  Kathi

 

P.S.  As with our cancer 'badges' your dad's chest scar will become a badge of honor.  I cannot tell you how many people (men only, but that is an entirely different discussion!) that will notice my beau's and show the top of theirs....but he usually trumps them by saying "Yes, but mine was a heart TRANSPLANT!".....*grin*....or I do....and the response is always "WOW!  You look so healthy!"....

As I always maintain, even with my cancer stories, you never know how much hope you can bring, just by surviving an extra day or two!!!!!!

 

marbleotis's picture
marbleotis
Posts: 706
Joined: Mar 2012

The good thing about a bad day is.....  it will pass.

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

You are so right. One day at a time is doable.  So glad your husband is feeling better today.  Prayers for your dad and you tomorrow. Deep breath.

Aloha,

Kathleen

jen2012
Posts: 1607
Joined: Aug 2012

Hi Alex...yea that fever is worrisome. I would call the doc at least. So sorry you are going thru so much. Definitely call in the troops to help with dad...you cant shoulder it all.

Are you using FMLA for time off?

alexinlv's picture
alexinlv
Posts: 194
Joined: Jul 2010

Thanks for the advice and support. It just feels so much better to tell you all and be able to get it out.  He had about a 100 degree fever last night but it didn't las long. He's Ok during the day.  We'll see what today brings. Alex

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Hi Alex,

We are in similar situations with our husbands.    Dick had chemo on Wednesday and still feels like totaly junk today.  He has a low grade fever and we are hoping it is a cold (our daughter had a low grade fever the past 3 days).  I am thinking of you and I know you are so maxed out with your dad and your husband.  Prayers that you will get some help.

Aloha,

Kathleen

alexinlv's picture
alexinlv
Posts: 194
Joined: Jul 2010

Hi Kathleen, I too am thinking of you often as I know our husband's have been on similar journeys for almost the same length of time.   How is your husband doing today? Are you still working? XO Alex

tko683
Posts: 265
Joined: Aug 2011

Hi Alex,

I hope that things are improving for you, your hubby, and your dad.  It sounds like you have way too much going on right now.  I can definately relate to everything you are feeling.  It is just way too much and seems to get harder as the years go on. Sending prayers for you all!  xoxo

PS.  The "Be strong" comment grates on my nerves also

 

Teri

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