Stephany,

I am not as strong as I sound. Honestly, I cry at the drop of a pin, but never in front of him. I do things that are not really good for me sometimes. I have tried numerous avenues to dull the pain and some work and some don't and let's just hope that none of them ever get me arrested :-).

The reality in my life is that I have had to learn when to back off myself. I am the proud caregiver when I am busy doing the giving. The busier I am the better off I am but when he stretches his wings and flies, I flop and hit the ground hard most of the time.

He says that he can do things himself so I go over to a friends for a chat. He swears he called my cellphone 20 times but I only heard it ring once and I answered it right away. When I got home I was in big trouble. He didn't know when to take his medication, how much, under what circumstances etc. and he wouldn't ask me on the phone for some reason.

It is weird because he wants to do this and that but he doesn't want me to leave the house. It is frustrating at the least and I am still learning how to cope with all of this.

Everyday there is some new surprise. For example,

Yesterday I had to go to the wake of a friends husband. He is dead because he had been having heart problems and when he was in the hospital a couple of weeks ago he checked himself out AMA. I watched my friend as she choked back her tears and I kept thinking about how angry she must be with him for leaving her behind. She is a strong woman but she was also very dependant on him and now... she is alone. This is why I raise hell because I don't know if I could live after something like that.

As for my husband today..... We begin week 3 today. He will have his 10/35 rad tx. He has had the side effects fast and furious from the beginning. He has 3 more chemo txs to go through and 25 more radiation. We are really just getting started. I told my husband just before the txs started that I could deal with his death if that is what happens so long as I know he fought to live with every amount of everything he had but that I do not think I could go on if he gave up. He promised that he would fight and that is what I hang onto.

We found a lump first. By the time he had the CAT scan there were 2. Finally the docs located the primary tumor on the base of his tongue on the left side. I have watched over the last 3 months the lumps grow. In the beginning I could only feel one and now they are both very pronounced. I can even see them from accross the room. Hopefully soon I will not be able to see them or feel them at all.

He is in constant pain and I call doctors all of the time. He has had fever for 7 days but the docs say his count is good.

Gary, I have been cursed at, blamed, etc. by him. I love him all the same. But when things get that tough I call my daughters or friends and tell them they have to come over because I have to leave for a while. In a way it is not fair because we always used to be able to fight before and I could yell back and say what I felt. Now I cannot do that anymore, so go to my friends and bitch at them for a while. They are really good about just letting me get it off of my chest. Then I move on to the next challenge.

I do not think that one role in this is harder than the other, I just believe that we each have our demons to struggle with and I am certain that emotional pain can be equally as severe as the physical pain. The biggest difference is that the only pain medications for emotional pain are not something that does any good and can actually complicate things more. I know I have tried and I have paid dearly for the experience.

The bulk of my strength comes from my friends and family. The people who are always there when I get frustrated and angry and sad and hopeless. I love my husband more than life and I know somewhere in me I can make it through this the same as I know that he can so long as we do this thing together. But do not think that I am not full of doubt because it is the biggest demon I have to fight and it is constant.

Stephany, you might also try reading these posts to your mother. I read them to my husband because he doesn't go on this site himself. I try to get him to but he won't so I read it to him. I am not sure if he is always listening but it makes me feel better to know that I at least gave him the information and that the words he hears are not mine.

You know your mother better than anyone, you have known her all of your life. You must always do what you think is best, but do not give up if you feel in your heart that it is right. Like I said, there will come a day when it will be easy to recognize and admit those things that cannot be seen now.

I still remember the radiation doctor telling my husband that this is very curable "If" he survives the treatments. It was not what we wanted to hear but I am understanding it more and more each day.

I do not know what is going to happen but I do my best to take things one day at a time.

We have 2 sons that are 8 and 10 and I go to Law School. My husband comes with me to school each day and lays down in the car while I go to class and then we go to the hospital for his txs. I know he is not comfortable in the car but he does it for me because he doesn't want me to have to quit school. So I know that he loves me and I am grateful for his sacrifices and I can only do the best I can to make his life as comfortable as possible. Hopefully, in the end, the light at the end of our tunnel will be blinding.

Good Luck to you!!
Cindy


Caregiver to ex-husband Harry. Dx 12/10/04 SCC stg 3, BOT with 2 nodes left side. No surg/chemo x4 /rad.x37(rad comp. 03/29/05)Cisplatin/5FU(comp. 05/07/05)-T1N2M0-(cancer free 06/14/05)-(12/10/06) 2 yr. Survivor!!!