I know what being a patient is like. I know the ups and downs, the highs and lows. I know what I think and how I feel. I know and understand things that only a cancer patient could relate with and others can only sympathize.

What I do not know is what it is like being a caregiver. I am sure the stress level is high. But how does all of this make you feel? Do you have feelings of being alone or is it just a big fear of not being able to do more than the Docs?

Before I got O/C, my mom got breast cancer. I kept telling her all would be fine. After surgery, it was all fine. But she kept telling me I did not understand. She was very frustrated with me and I with her as well. AND NOW.......I had to applogize to her. She was right. I was not being the CG I needed to be. Now I am. But how do you all feel during times like the ones you are now facing and how do you all cope, other than OCF?

I only ask this because I know it has to be eaqually as hard but in a different way. As a one who has O/C I merly want to try to understand all sides of it.

Thanks,

John

Hi John- It's hard to get a balance between being over helpful and helpful enough. I have to remember that my husband is a grown man but I also have to remind him to get enough calories in and enough fluid. He is really good when it comes to maintaining his PEG and hygiene issues. It seems like the scheduling and paperwork are left up to me. I also have to remember that he wasn't all that talkative before the cancer and to also realize how hard it is for him to talk now. The worst part for me is to try and make plans for the future without upsetting him. It almost seems like he is just realizing now how serious his condition is so I try to spare him some of MY concerns. The best thing is just to be there and be patient. Something I've had to work at since I tend to be a type A personality. The OCF is really the best resource I have found for helpful information and really great people!
Sue

John,
I am pretty new at this caregiver stuff but it has changed me forever. I was always very close with my mom but never realized how much until the thought of losing her came my way. At first, I cried all the time. I now think it was the intial shock of hearing she has cancer. I don't cry as much now. It doesn't mean I care less, I think it is just that I have accepted it the best I can.

At first, I called my mom non stop and I was constantly asking her how she was which I think wasn't exactly what she needed at the time. I may have made her more worried. She has handled this so much better than I have which has surprised me. She is the type of person who is very independent and would never want to be a burden on me. Not that she ever could be, but in her eyes she would feel that way. She has had to let go of some of that independence and quite honestly, this is the closest I have ever been with her. I am not saying that the cancer is a good thing by any means, but it is the first time I have ever been able to really give back the support she has shown me all my life.

So my experience as a caregiver has actually been ok. Yes I worry all the time and yes, this is a nightmare but I have been trying to live in the moment and take whatever it is infront of me and embrace it. I cant believe that it has taken something this horrible to make me realize how very lucky we are to have each other.

Also, I think that CG's want to do as much as they can. It helps them to get through this too. They may not have the physical pain, but trust me, they are in pain in other ways.
I wish you the best.
Denise

The other day I saw this question and I thought oh, good question

Sue, Denise and Michelle,

I sat here today and read through your posts. At first it is what I would have expected. But then, as I read it over and over again, I could feel all the pain which you obviously go through on a daily basis. Then I started to feel guilty about the way I feel, AND I HAVE O/C. But the truth is, both caregiver and patient share lot of the same feelings. Maybe in some cases, a slightly different way, but in my case, the exact same way. I feel all the things you speak of. The only difference I can see is that I am the one who has to suffer the actual physical side affects of treatment. From the mental side of things, I think it is much the same.

I as well know that I have a 50-50 shot at making it through all of this. I find solice in two things.

1. The most recent studies on newer techniques and drugs such as Erbitux are not in yet and will not be in until they see how WE do. Hopefully what they are doing today have a better mortality rate than that of 5 years ago. We shall have to wait and see.

2. I have had 2 family members who should have died according to the doctors. The one lived a long time and died of something else. ( OLD AGE ) The other, still has cancer, but has lived 18 years past his original prognosis. I have had two other family members who have beaten cancer. SO we are a stubborn bunch!!!!

In closing I would like to thank you both for sharing your experiences and being so honest. I would also say that our friends offer a wonderful source of comfort but at times, only to a point. Our biological family offers even more comfort and help. They offer things that no one else would even consider. But there are times when they do not know how to handle things when you are having a really bad day. But the family I have gained here at OCF, they never cease to amaze me. No matter the time of day, good days or bad, they are always there for you and will continue to be so as long as you need them. This is where I find the most solice of all.

Thanks for listening,

John

Michelle,

WOW. Reading your post brought back so many memories. I spent 9 months 24 x 7 caring for my mother during her last stages of ovarian cancer. As I read your post about caring for your mother, it was easy to smile and remember some of the great times we had together. I could recall as a child so many fun things we did but I could not really comprehend how incredible some of those things were until we literally re-lived them during such a rough time. We talked of over 40 years of growing up and how ironic it was that we ended up in reverse roles, me taking care of her. As you say, it was a very rewarding experience. As the oft quoted start of a novel, "it was the best of times and it was the worst of time".

I truly thank you for the spousal caregiving. You taught me things I did not even think of during the battles that really help me understand more today than I did while going through treatment. I still see the battle scars in our family and while reading your recount, I understand more of the depth of those wounds than I did at the time.

Thanks for sharing all that.

Now, for a funny Montgomery story for you. When I was in 1st and 2nd grade and a year before that, we lived by Kilby prison, close to Gunter AFB. We went to pick pecans one Saturdy afternoon and didn't realize the little building on the other side of the property. As it turned out, it was the highway patrol headquarters and as they watched us pick bag after bag of pecans, they came over and made us dump all of them out or threatened to take us to jail for theft of state property. I just knew they went back and picked them up after we left!

Ed

Michelle,
Thank you for such an eloquent synopsis of what it's like to be a care giver....you put all of the words and emotions that I could not express or even begin to identify, finally come to fruition. Being a care giver to a brand new husband 1 1/2 years along with getting to know his family has been a challenge and very lonely. Thank you for your words as they truly helped me understand and solidify my role as a caregiver.

Paula