update- 2-25-10
Hello everyone, Steve has had a difficult cycle this month. He is off Sutent Saturday this week, and I am so glad. He has had most of the nasty symthoms this time. The last two cycles were almost a breeze comparied to this one. He has had a terrible time with his feet. The diarea, nausea, no taste coming sooner than ususal. Oh, did I mention CRANKY. I have really felt for him and at the same time he has been hard to live with. I feel guilt for saying this but why do people hurt the ones that love you the most. You can tell I'am a bit cranky myself. I don't tell this to many people. He will say his sorry and I accept it and go on. How would I feel if I were in his shoes? He also has to deal with knowing he will have to stay on this or something for the rest of his life. Please don't think I'am not grateful, because I am glad that research came along with something. When he was dianosed all those years ago the only thing that was working was to cut the cancer out. The wonderful news for all of us is the longer our loved ones can live the better chance we have of finding a cure. I know that Steve is not as sick as some of the people on DS. But please know that I think of this site DAILY and pray for those who are here. Hope everyone is having a day a good day. Love to all, Wanda
Replies
Wanda, Well having been in Steve\'s shoes, I looked forward to the 14 days off. Like you said the diarea, nausea, no taste, feet and a number of other things would make a person cranky....my wife told me I was cranky also. My Sutent quite working after 9 months and I would take the side effects back for the drug to work. If Steve is working then he is put a lot of energy into that activity and maybe cranky when he gets home.
I am thankful that new drugs are coming on the market as I need one. I should start with Afinitor soon. Hang in there as I know Steve does appriecates your support.
Cheers Gary
I had a terrible time of it the last few months taking care of my husband. If I start feeling at all guilty, I just ask myself whether I\'d react the same way now as I did then, and the answer is probably yes. He really didn\'t always make it easy for me. Also, I was trying to keep control over something in an uncertain environment, so I got bent out of shape over the house - spilling & breaking things, etc. He noticed but I couldn\'t help it.
Took a break, came back to him recharged and loving again.
All said, this is not an easy role for somebody who isn\'t an earth mother with no identity or needs of her own - i.e. ALL of us. Be more gentle on yourself. You need resources of your own to be able to continue to give to him, so take breaks when you can, too.
I hate everything about cancer. I wish the very best for you.
Gary, sorry if I came off ungrateful. I too will accept the side effects for the staying stable with this disease. So many of you are having a rough time and I\'am sorry if I offended anyone. Best wishes to all DS friends.
Dear Wanda,
I\'m glad you let this off your chest here...this is our wonderfully safe place to share our stories....the good, the not-so-good, and also the beautiful too!
Like you, I\'ve been at this for a long time.... M has been on Sutent and many other drugs...you\'ve listened to me anquish over the side effects of his newest treatment.... all the side effects are miserable for the patients who have to bear it everyday. However, as care givers, we have to bear the pain of watching our loved ones suffer. We work so hard to give all our support and care to our loved one to try and ease the pain for them. This road is so very challenging. What works for me is giving myself some space to recharge my spirit. I\'ll take a day off with a friend or just go out and pull weeds (very therapeudic for me)... All I can do as your friend is say that whay you and your husband are feeling is normal in this world that we belong in. Don\'t lose heart...you are my inspiration!
Love, Linda
Thank you all for the encourgement. I guess Steve and I were both having a rough day I love him with all my heart and all of you are a great help. God bless each of you. Wanda
Nobody doubts that you love him dearly. That\'s what makes it so hard - sometimes you feel so guilty that you aren\'t treating them perfectly when you really do care so much. External events just get to be too much sometimes. We\'re just trying to tell you not to feel that way.
Hugs, Gail
Hi Wanda,
Been missing you this week. Hon, we all have our days when things seem to overpower us. One thing I love about this DS family....it\'s a safe place to vent. We all understand and know how difficult living with cancer is for all concerned. The good news...tomorrow is a new day. I pray that all settles down for you both. Take care, my friend.
Love, Ingrid