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.