Hello to all,

My name is Ragnar. My wife (Penny)is on the board
as well as her sisters. I have to admit its been by some gentle coersion my coming here, but I am here now and see there is much knowledge and comforting comments to be found. I've read some of the coping and anger forum and will admit I find my fear paralyzing at times. Penny has been my rock and now this role reversal is strange and scary at the very least. Any comments on this? Penny has just started her IMRT and will continue her chemo at the same time. With only 1 radiation under her belt I understand we are in for a very long go of it. Thanks in advance for any comments and comfort you send our way.

Hi Bill,

I don't think the fear ever goes completely away but it does get better. There's no good role to have here, patients and caregivers face different issues but they are all painful to deal with. You will find a way to manage all the strange experiences and get into a new routine. Many people on the forum refer to it as a new normal. Jack and I found it important to remember that our goal was for that to be temporary. We've been married for 25 years and had a life before cancer that we wanted to get back to.

This time it's your turn to support Penny as she has obviously supported you. Progress is a very slow process but you just have to put one foot in front of the other and eventually you find you've gotten through it. Just take it a day at a time and make sure you learn as much as possible to help you deal with this.

Use the search engine on this forum to see other posts on problems or side effects Penny is having. You can look at recent posts or go back further. Also check out the caregiver forum posts, there's lots of good information. Also don't forget to take care of yourself. You cannot keep it all in, develop a support system for yourself.

This too shall pass.
Regards JoAnne

Hi, Bill- Good for you for being strong enough to join us and express your feelings and fears! For me, as a caregiver, there have been two different kinds of fear levels to learn to deal with. The 1st, of course, is the fear of losing someone you love to this dreadful disease and that fear can affect you at every level of your being. The 2nd fear has been that of not knowing how to deal with some of the situations and side effects that go along with the treatment of Head and Neck cancer. In my 65 yrs., I have been a wife, mother, school teacher, business owner, president of several large boards of Directors, but I have never been a nurse to a seriously ill patient. I have often felt [and still do at times] like we have landed on another planet. Here is what I have done to overcome fear #2. I use this site daily to research, ask questions, and develop relationships. I have gathered a list of direct phone numbers to John's Docs and or nurses. I am on a first name basis with our pharmicist now. Any time friends asks "what they can do", I think of something--mostly grocery shopping or delivering a homecooked meal to us. I also have made some realistic choices about how I need to spend my time, and have put on hold some things that just weren't that important in the sceme of things [for me that meant not worrying about what the house and yard looked like ]If you are to be Penny's #1 caregiver, You will find that you must prioritize also. This is a time for you to stick very close to her and give her permission to use all of her strength to get well. Since you were smart enough to come here, I think you can rise to the challange. Amy

Hi Bill,

Welcome! Great advice from Amy and Joanne.

My husband is a great guy, but this special care giving to me was very hard on him. My treatment started with sugery in Oct. 2005, then Rad. and Chemo together. Started November 2006 and ended Jan. 20th. The months that followed were difficult, but at 6mo. started to feel better. I am now just about 9 mo. from when Treatment ended and doing better. My husband is just now feeling like things will be OK.

Bill it is hard to be a caregiver at times so you will need lots of help and support. Get out of house now and then. Have someone come and take over for a day or two. You will need a break at times, other wise it will wear you down.

I wish you and your wife the best.
take care
Diane

Hi Bill, It is so difficult for 2 human beings to get on the same page when life is perfect. Men and Women are wired differently. We are different and its seldom when couples are both in the same moods all the time. I was very young when my first wife was dealing with deatjh from breast cancer. She was mad that I was going to live to raise our 3 yr old little girl, and I was mad that she was going to die and I had to raise our 3 yr old little girl. Neither one of us vented our anger well. I was selfish and expressed my anger fears and even though nobody wants self pity I felt like she was getting all the help but where was the help for me. To put my rambling thoughts into one sentence I wish I could have been less selfish, During a crisis like health you have to make a concerted effort to get on HER page not yours. If she is the women you married she will come around to appreciate your sacrifices, My wife was in a coma for about a month and I was devastated because I always thought that it was supposed to be like Television where you said these wonderful things to each other. WOW was I wromg. Then about 2 weeks before she died she awoke and apologized for taking her anger out on me and that I was a wonderful guy and she loves me more than life itself. I stuck it out and that one line is what has sustained me thru the rest of my life. Boy was she an inspiration to me. And the best part was I mentioned she had Breast cancer and she said don't say things like that or they may come true. Second chances can be wonderful. Diane's advice is so true you need your own time away from the stress sometime. Amy and Joanne your special people I admire your courage and strength. My wishes to all.
Mark.