I have now run into a problem that 1. I didn't expect (surprise) and 2. that I sisn't know would be so hard to deal with.

Maybe you verterans out there can help me with this.

My husband just started his tx monday january 31st. The chemo (cisplatin especially) hit him hard and fast and he was weak and very sick within hours. Everyday I went to the hospital and I did all I could. Then I brought him home and took care of him here. Now he is feeling a little better even though the mucosis has gotten much worse and the throat is starting to hurt. Talking is a challenge now but he can get up and move around.

Now he is driving himself to radiation tx. It is 50 miles round trip. He is making me crazy because I understand that he wants to do these things himself but I am afraid that if something happens to him while he is driving then he will get hurt or even die.

At home, he seems to need me less and less. I know he is hurting but he just wants to do it himself. Being a terribly independent person myself, I can cpompletely understand.

But.... what is happening is that I am now feeling left out, and not needed. I know that this seems like an irrational feeling but I have it just the same.

Any advice on how to cope with these moments would be greatly appreciated.

Thanks,
Cindy

Dear Cindy,

Being the caregiver to my husband Ron, I understand what you're feeling. My husband Ron finished radiation treatments on his throat about 2 1/2 months ago. Going through the radiation with him was probably one of the toughest times in my life. He too would drive himself back and forth for treatment, but it wasn't as far as your husband has to go. Ron got "distant" from me too as the treatments progressed, and my feelings were hurt. We did talk about it, and he told me that it wasn't personal at all. He was in a lot of pain, and he was focusing all of his energy on just getting through each day. I can't even begin to imagine dealing with that kind of pain. Even with the pain meds! My advice to you is try to remember it's not about your relationship, it's not personal. He's just trying to get through this. All of his attention and energy is focused on battling this disease. Trust me, it will get better. He will be the loving husband he once was. He just needs your understanding right now. Give him space if that's what he wants, and make sure to take care of yourself! If you can, go have a facial, go for a walk, do something nice for yourself. Do you have friends you can talk to? I relied a lot on my girlfriends during that time...they really helped me. Best of luck to you.

Shelley

Hi Cindy
Well I'm a care giver to my blind husband, with advanced prostate cancer (in remmission for now) my Mom is 80 and losing her sight also and my Dad 87 has dementia. So no where in this was there room for me to be ill, I took the view that if I DID NOT DO THIS FOR ME, NOW...The whole thing would fall apart, so I be came very self centered.
Give him some space, the day will come when he will need some help with the driving, tell him you will drop him at the hospital, you need the car to do some shopping, tell him the time you wil return and how ever hard it will be stay away till then. The chances are he will have to admit defeat before you need to try these ploys..
Remember this is DOABLE just! ! !
Hang in there
Sunshine... love and hugs
Helen

Cindy, as a patient and not a caregiver, I can offer you a look at the situation from this side of the equation. I'm also a male, so I can relate to where Harry's coming from. I drove 60 miles one way for my treatments and worked throughout that time. As an outside salesman, I was driving all the time, meeting with customers, etc., and did not take any pain meds until I got home at 5:00 or so. My focus was on getting through the day. That was all I was interested in. By the time I got home, I was not a happy camper. And was hard to live with. And grouchy. I'm sure Harry is not excluding you, just trying to cope with what is happening to him. At least this way, he feels he has control over something in his life. And the more things he can control, the better because he has no control over what the doctors do or what the disease is doing to him. Therefore, it is important to control something. My advice is to try to ignore your feelings of not being included. It is not directed at you, but at the situation Harry is in. Once this is over, he will return to a more normal attitude and not feel so out of control. Hang in there, it is much better in a few weeks. And it gets better and better thereafter.

Hey Cindy,
I sure understand what you are going thru. Dan was very ill from the chemo/rad and after about 4 weeks he could have never driven himself. Also, he lost his voice completely for 6 weeks and that was a terribly lonely time for me. Dan didn't make much effort to use an erase board then as it took all his effort to get up, get a shower, be driven to treatment and then home. He spent most of the rest of the time in a recliner sleeping on and off. The meds really knocked him out alot which was good because the pain was severe. I spent many months doing for him and being afraid of anything he tried to do in the recovering months, and he and my boys finally had to tell me to back off some. It's hard doing everything for them and then not. I took many walks with the dog to cry and pray and ask God to help me be what I needed to be in this situation. I also relied heavily on our bible study friends for support.
God bless and take care,
Debbie

Cindy,

I agree with what some of the others have said. I was determined to keep working as much as possible during radiation, and I drove myself back and forth to treatment every day (although not as far as your husband is driving). It was basically an effort on my part to preserve as much of the "normal" routine as possible to try to convince myself that cancer wasn't consuming every aspect of my life.

Like Kirk, I was generally pretty stoical while I was at work, but when I got home and the pain came on strong, I would scream and vent in frustration. Many of us have looked back and concluded that we were probably awful to live with at that time, but fortunately, healing works wonders.

Cathy

I have made a decision tonight to go out with a friend. Her daughter is going to watch my kids and she and I are going out for a while.

I asked Harry if it was ok with him and he said yes, but I wonder if he is just saying that. I just feel like I have to get out of here for a little while. No kids, no cancer. I know that I am sounding very selfish and I don't mean to be. It is really just the only perspective that I have and while I try my best to understand what he is going through, I really cannot physically feel the pain he is going through.

He wanted me to go with him today so I skipped school and went. His throat and tongue are hurting so bad now and the mucus is really really bad. I went tonight and got the fentenyl patches for the pain. I hope they help. He is not drinking as much as he should and I nag him about it all the time. I know he hates hearing me say it over and over but I am just doing what the doctors said to do.

He has also had fever for 4 days and it is continuing but now I cannot get him to swallow the tylenol. The doctor had prescribed suppositories (sp?) but I have discovered that most pharmacies do not carry that strength.

Anyway, I feel guilty about going out away from him and my kids for a while but I feel that if I don't I am going to lose control which will help no one. I am really looking forward to making it to life after treatment because life during is really not life at all. Just one crisis and heartache after another.

Thanks for all of your input. I know I can get all kinds of perspectives here and it really does help me to sort it all out.

Cindy,
Your post struck a very familiar chord with me. My dad was fiercely independent, pretty much to his final day. It worried the hell out of me. For the longest time he insisted on driving himself to treatment, etc. I was always afraid that he would get into an accident. I had a habit of being close to the hospital each day he had treatment just in case he didn't feel up to driving home. I know it sounds neurotic. I wanted him to have his independence, but I also wanted to be close by if he needed me. I never told him that I positioned myself within a mile of the hospital, but I'm glad I did. It gave me peace of mind. Also, the day did come when I got a call from his treatment nurse asking me to come and drive him home because he wasn't feeling well. It was tough for me, but he wanted his independence and it took me awhile to understand that. I think all care givers go into "over protect mode", but it made sense when I realized that he wanted to try to live life as normal as possible. Perhaps that's what your husband is doing. I'm sure it's not being done to leave you out, and you certainly are needed and appreciated. I'm positive of that. He's an independent guy, you can't fight it.
Regards,
D

Dear Cindy,

We tend to be the hardest on our caregivers. I don't really know why. You might want to sit down with your husband and let him know how you feel. He probably wants to shield you from the pain and suffering he is feeling. I hope you can understand what I'm saying. No matter how he treats you remember he still loves you as much as ever. How many men actually come out and express this. Not often enough I'll bet.

Best Wishes, Danny Boy

Cindy,
I live a little closer to the medical center than you guys do, but I drove myself to the radiation treatments most of the time. The only risk that I see is if he gets drowsy from the pain patches. I was not married at the time, but I did have my mom and sister nearby and friends who offered to drive, but most of the time I just felt like doing it myself, so I can understand.

Also, if you husband gets the PEG, it is very easy to get both hydration and medication through the tube. I used to inject liquid vicodin or dissolve vicodin tablets in water and inject it into the feeding tube.

I think that it is good for you to go out. If your husband is anything like me, when I feel lousy, I am just fine without company, and you need the break Cindy.

Take care,
Danny G.

Cindy
My hushand is blind, so when I became ill the whole perspective changed, I was the care giver and the receiver of care, crazy place to be.. still not resolved that one...
Sunshine...love and hugs
Helen

Hi Helen, That must have been hard for both of you. Does he have a dog? How are you feeling now?
Cathy

Cindy-
I'm so sorry you feel alone during the times you really need that hug or assurance that you ARE important and have a "purpose" in facilitating his treatment and recovery. It's a lonely place to be and please accept my heartfelt love and reassurance.

I used to look at Ed all withered and burned. I hated that I was so scared (absolutely terrified he'd see it) and hated it even more that I was so angry; looking back it was anger at the cancer for taking my husband (as I knew him) away. I felt if I didn't have a purpose or job I was worthless. I told Ed that if nothing else, please let me drive him to therapy. I HAD to do something. I don't know if he really wanted it because then HE wasn't fighting the cancer or it might get the best of him - but he let me anyway. Never missed but one radiation treatment and that was because he was having a temper tantrum and had a gentleman friend from church drive him. I was very blessed.

This sounds so sick, but I would have gone totally bug poop if we weren't constantly in crisis. It made me take my mind of the emotion and helped me focus on the mechanics of medicine designed to make him well in the long run. (I learned to access his mediport, dispense IV's, watch for signs, place Domeboro soak compresses on his radiation burns...) My once strapping energegic hubby was turning into a malnourished wisp of a man.

God forgive me and more importantly, I hope my kids will forgive me one day when I have the courage to ask. I couldn't take it out on Ed but my kids sure got the raw end of the deal for not reacting the way I thought they should.

Looking back, we do what we all need to do to survive the devistating effects of cancer. Physical and mental. Ed's sense of worth was down to nothing. He risked everything to do what he felt he needed to do. You know what it feels like when you think you're creating some magic environment to ensure your loved one's recovery (kept them away from germs, plenty of bed rest, cram those liquids down their throat/peg tube it they can use it) only to have them drive 50 miles each way to treatment (or like mine, mow the grass in 100 plus degrees with an IV strapped to his back in a backpack) because that's what they would have been doing if they were well.

It all messes with your head and your heart and when you just get used to realizing it isn't personal, something new happens at a different stage of treatment/wellness and it's all thrown off again and you spend more time trying to remember it's not personal all over again.

You're not selfish. You're a loving person. Don't let the feelings of guilt that you might have fun or relax while he's weathering the effects of chemo and radiation make you serve penance by thinking its selfish. You love your husband, he loves you (and I'm sure appreciates/knows how difficult it is for you to watch him drive off to treatment but lets him do it without too much fuss). It's okay. I tattled on my husband every chance I got. One day his doctor said, "Susan? So what if he gets an infection or dehydrates? You watch out for him after HE watches out for himself. If the cancer's going to kill him at least he knows he lived fighting it. Trust that he'll sense when enough is enough."

Hang in there. I will keep you uplifted in my prayers.

Oh my Susan, You said it all. Exactly what is happening. Harry got Neutropenic fever last week and his immune system took a vacation and he was in the hospital all last week. He was angry and all that jazz and it seemed that everytime I tried to say something to try to make him feel better I just got on his nerves.

He came home friday and has not been able to keep any fluids down. I took him to the hospital this afternoon and they gave him IV fluids and nausea meds. Then they let us come home and he is still vommiting.

Like you said, as soon as we got home friday he was doing the laundry, the dishes, up and down the stairs a hundred times, feeding the dogs, taking out the trash, etc, etc. It was maddening to me. I understand why he wants to do all of these things but I can also recognize that he is over doing it and it just makes me worry that much more.

Thankfully, the doc has put him on the pain patches so now I have a really good excuse to deny him driving privilages. He seems to have settled a little better on the idea of letting me take him and I think he recognizes that I can ask the right questions etc. I am also expecting to get an honorary pharmacists degree out of this.

I almost fell on the floor when, after I finished telling the doctor about all of the medications that Harry was taking, he turned to me and asked if I was a pharmacist. LOL

I said no I am actually a law student and he just looked at me and smiled. I think I scared him. :-)

I am trying to cope with everything and yes the mechanical day to day routine does wonders for helping to relieve the emotional burden on me. I just hope that this thing will end soon and we can get on with our lives.

We have so much more to do together.

Thanks for your words, they are very helpful and encouraging.

Cindy

Dear Cindy and other caregivers, this forum is so important!! My John came home from sugery determined to do what he wanted to do[with no understanding of his cancer- his attitude , since diagnosis, has been "do what you have to do and get it over with, I don't want to know about it" I, on the other hand, wanted to know everything I could find about it. And Hooray, I found this website. However, since I understood and took to heart the post surgery instructions, John and I have collided more times than I would like on how he is taking care of himself.I feel like a bouncing ball between witch of the west and loving wife. I guess we caregivers really need a place to vent. Amy

Cindy
It maybe the way your husband has decided to fight. I know I want to be strong and do everything I had done before. Also I wanted control, cancer takes so much, I wanted the control of my life.