Sandy, thank you so much for your supportive words. You seem to have it all together in such a short time. Is it that "California-state-of-mind" mentality?? jk, tho I wish I could 'go there' permanently sometimes. It's easy to get the guilts about feeling down, knowing what hell he has gone through is so much more, and I have no right to be feeling that way. All the while not wanting to show it on the outside, staying strong for him. And I get to see it all from this side - it is a cruel fate we have as CG's I guess, watching and waiting, watching and waiting.
Meanwhile we juggle appt. logistics, phone calls, diet restrictions and menu parameters , schedules, meds, questions from inquiring friends, all along with the usual daily routines that must go on.

John said the other day "I could not do this alone." That's enough for me to persevere.

Hugs to all you awesome caregivers out there.

Bonnie

Hi Bonnie, Thank you.

I think it was more for my mental survival that I figured out what I had to do. It's a nice place to visit even if we can't stay there permanently! So, I'm for visiting it whenever necessary. Remember to be kind to yourself. John appreciates you--that's huge. It means a great deal and you deserve it.

You are right, being a CG is a cruel fate. All the things you described are so familiar to me. You describe being a CG so completely--down to the guilt about feeling down. I hope you have chimed in about your experiences on the threads about caregivers that were on the forum recently. Your insights really capture it so well.

I'm finally understanding the depth of why a CG becomes a co-survivor. It not only changes the patient's life forever, it changes our's as well. I hope if/when I'm called back into active duty, I'll be as good at it as you and all the wonderful caregivers here on the OCF forum.

Love ya!

Sandy

@ Jill: I'll be keeping you and Ken in my thoughts and prayers that everything is fine. Keep hanging in there, girl! Let us know what happens with the scans. I know you have a new normal to adjust to, but, congratulations on being a co-survivor!

Sending a hug,

Sandy

Thank you Sandy. Unfortunately we did not get good news yesterday. The cancer is still there so they are scheduling a total glossectomy within the next 2-3 weeks. They are hoping they will be able to save his voice box but they won't know until they get in there. Ken is a mess so I am the strong one right now - it seems like we take turns which is a good thing. Heading to the Cape after his PET scan tomorrow to get away from it all for a few days - hope it helps!

Like I told Ron never give up, life is always good when you are on the green side of the grass no matter what life gives you is how I feel. As long as you are still "suckin air" (what Ron says) it's good to be alive! Good luck and stay positive!! People who have gone thru these glossectomies are truly amazing and damn great fighters!

Oh Jill, I am so sorry. I read your other post about Ken this morning. I'm glad you are getting great advice and support from survivors who have gone through a total glossectomy. Ken is fortunate to have you gathering information and support for the two of you. What a blessing that you are strong and you keep him going and that he does that for you as well.

I hope your trip to the Cape helps you and Ken relax and takes your mind off Ken's surgery at least for a little while.

Sending positive thoughts, prayers and hugs.

Sandy
xoxox