Bonnie - I agree with Amy - it is great progress for Teri to be able to take her boys to school and pick them up! My son was barely able to take his daughter to school a couple of times a week and then he would come home and sleep until it was time to go pick her up. We are so anxious to see hopeful signs and they seem so slow in coming. I was struck by Teri's description of the pain in one of your posts. She had used the exact words my son had a few days before and it made me see how real it was. Doing household chores, laundry, prescription runs, etc. has helped me to focus on something other than how my son is doing. Bonnie, if we lived closer I would be suggesting a "mother's day out" for us. You've been doing so much for her and it's obvious how much you love her but maybe you need a break yourself - maybe a bubble bath, chocolate, a good book, sudoku puzzles or just doing something special for YOU!

Thanks all for the posts. I've printed all of them & given to Teri. Her comment was "Wow, I didn't know this was so "normal"!" She appreciative of all your comments & advise.
And to add to the problem, it's finally dawned on me that I'M depressed. I just can't get the tears to stop flowing! I'm calling the Cancer Center tomorrow to get an appointment with a counselor for ME. Hopefully Teri will follow suit shortly.
Bonnie
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CG 41-yo daughter, stg 3 SCC lateral tongue, partial glossectomy, mod neck dissection, 1 pos node, IMRT x 30 complete 12/22

Well, good for you, Bonnie! I'm so glad you are doing something for YOU! Tears are OK, you know - they can be very cleansing. And it's OK to feel some compassion for yourself. You and Teri have been going thru a rough time but things will get better. Keep us updated. I'll be thinking of you both and sending positive thoughts and prayers your way.

Way to go, Bonnie!! Getting that appointment may turn out to be the best thing you have done for yourself in a long time. Amy

Bonnie take me with you!!!!
Keep us informed how YOUR doing.
Always, Mark D.

Bonnie,

Your daughter and I are roughly the same age. I was 40 when I had my first of 2 surgeries followed by unexpected radiation treatment. I was 180 pounds going into it and was 135 pounds 4 weeks after radiation. It will get better. It was just to painful to eat and I had no desire to do so.

I am now (2 years later) a "Too Fat" 185 pounds and actually miss the days I could wear the jeans I had in High School. :-)

The pain will subside and things will get better.

I would offer this advise as well:

I did not want my wife to consider herself a "Fulltime Care Giver". I would not use that term around your daughter. It would have absolutely infuriated me. I know that you mean well and take this as advice from someone that's been through something similar. Your daughter had cancer surgery not brain surgery. She needs to get back to her own routine and doesn't need you making decisions for her. She needs to be in charge of her condition and situation. You are there to help and not to take over. She needs to feel empowered to deal with the things that she normally dealt with before. Let (or require) her to make the same decisions without interference or even suggestions from you. You'd both be better served if instead of making decisions for her, you force her to do it.

I don't mean to sound brutal. I know from experience that it's easy to feel helpless and have the "Why me" attitude. I know this because it was me not long ago. It took a friend of mine that I hadn't seen in years to tell me I was a "Whiny quitter". He went on to tell my wife that she was feeding my "poor me" attitude and to stop being my maid and start being my wife. I was furious, but he was right and that made me get off my tail and start living again.

I'm not trying to be negative. I know that you have nothing but the best intentions.

God Bless,
Rob Trainor

Hi All,

I am new to the list but feel I have something to add as a Survivor.

I read in a book about cancer during my treatment in 2002/2003 that hit home and can sum up this situation. As cancer patients, there is an enormous amount of treatment information to digest in a short amount of time. We have to rely on our doctors and nurses so much to tell us the next step. Even if it is come in tomorrow for X appointment. The treatment wears the patient down so baddly that this becomes the security blanket. When that treatment is over, especially with radiation, there are no more doctors or nurses to tell us what to do any more.

The book went on to say that each person reacts differently post treatment obviously because the treatments affect each patient differently.

Caregivers can not fill the role the doctors and nurse fulfilled during treatment. However, it does not mean a caregiver should give up.

What worked for me was talking to other people through my ENT as a sort of therapy.

Hope this helps shed some light on what a survior goes through post treatment.

Jim

You bring up a good point, Jim - when my son's Tx ended, I felt I had lost my "security blanket' and I was only the CG - the routine we had settled into was suddenly gone and we both were having to face a new "uncharted territory". So we both had losses to overcome and decisions to make which can be scary and leave us wondering "what now?" I like what Rob said about how important it is for the survivor to feel empowered and in charge of the situation. It really helps to know or feel that no matter what the situation is, that there is always something we can do about it. And Bonnie - let us know how YOU are doing!

Since I don't know where the "OCF- Getting through It Together" book is [stage wise] right now, I don't know if this is possible, but the inclusion of the above posts would be very beneficial to caregivers [as well as patients] They express different points of view, different appraoches to dealing with this and are good food for thought. From caregiver Amy

A FRIENDLY exchange between my wife the exellent Caregiver and me the ideal Patient.
Caregiver--- You keep this shit up I'm going to poison your drink.
Patient---You keep your shit up I'm going to drink it.