Hi Gayle,
I remember these last few weeks only too well. You truly are doing a great job. You're right too, at this point you can see the light at the end of the tunnel. Just a little bit longer.
As you look back at your time isn't it amazing how far you have come? Where we are, 4 months out of tx, it seems like it was so long ago. The after effects (affects?) linger, but the constant pain is gone.
When I read one of your posts and you said you didn't want to be mean I had to laugh. I remember at one of our Dr appts Kevin was groveling about something and giving the nurse a bit of a hard time. I finally said " Ok Debbie, thanks for your help, but we are done with this." She just looked at me and I told Kevin to get up and we were going home. I told him that if he was going to be a ---- then he really wasn't interested in what was best for him so none of us were putting anymore time into him. He just looked at me and said " I didn't say I wouldn't do it, I was just complaining about it." He had been complaining loudly and it was awful. So I said "so, you're going to do what they are telling you and the groveling is going to stop?" He said yes and it did. Sheesh...did he think any of us were having fun??!! We laugh about it now. He is 6 feet tall and I'm 4'11, and here I was treating him like a kid. But it straightened his attitude out and he got amazingly positive after that. I think he realized he had fallen into the "poor me" trap and fought to get out of it. After that he became the chemo/radiation rooms clown. I can't tell you how many friends we made and people I prayed for because I wasn't having to worry about him as much.
All this to just say your comment made me laugh at the memory.
The caregiver roll is soo unbelievably hard. Keeping it all going plus watching our loved one go through it all is just overwhelming. I found this site when we got to our last week. Before that I was on my own and all our friends seemed to disappear. And like you said, his family really didn't want to hear ANY negative so I didn't have anywhere to vent. I just got in the shower and cried! Then I started talking to the nurses and they were a tremendous help. Then we found this site! What a Godsend!!!
Hang in there. Keep venting here. We have a follow up PET this month on the 12th which is causing me quite a bit of anxiety, but I am keeping it under wraps, except for on here, because "nobody wants to hear it!"
Oh, we also used the Biotene products, an extra soft toothbrush, the BMX and the Aquaphor. Once the outside radiation burns started we switched to the Silvadene cream. We also put a bandage over it so his shirt collars didn't scrape.
The pharmacist told us that the patch would be at full effect in 24 hours, so....
Blessings,
Kathy