Shiloh, IL (Hi 87 Lo 65)
We still don't have our household goods. We heard there's so few truckers and they have to have other loads going the same direction. They gave us date of July 12. doubt it will happen.
The weekend was great! I thought we wouldn't have fireworks around this area, it's all buildings but to our surprise they were everywhere. Just like at Lake Juliana in Florida there were fireworks in front of our complex. It was neat. A lot of the explosions were at rooftop level, but still pretty. I noticed a lot more yellow this year.
I have to go on a rant. This is the worst area to get medical help, answers or anything done. We've experienced it several times and this week it was worse. I've had three people tell me we needed PT, OT and speech therapies. I've talked to a few social workers that have just put us to the side, not hearing from them at all. The one office doesn't tell another office what's going on and what meds or services are needed.
This leads me into the new primary doctor we met this week. She believes listening and getting a lot of info from her patients. The first problem for right now is Jim hasn't had a bowel movement for 14 days. That's in the dangerous level. He's passing out and dizzy a lot so was checking over meds for both problems. She ordered solution for an enema, this is from chemo mainly. The BP was too low and took away four meds doing the same thing to lower BP. Out of the 22 pills we're now down to six, which is a lot more manageable. Now speaking about nothing being passed on to me, she found on his charts from the ER that he may have pneumonia, an aneurysm, and enlarged heart and gallstones. She's going to work on that next. Her view is to let the body heal, let what's going to happen to happen naturally. The more meds the less quality of life. I totally agree. Surgeons and doctors working with most cancer can sometimes have good results. With Glioblastoma it's not that easy. Oncologist want to have people go as far as possible to find cures. The patients are miserable and it's even harder on the caretakers. Dig deep in yourself of what do you really want to do, continue with treatments or let nature take it's course.
We finally have a visiting nurse and PT, OT and speech started this week. They're coming after each other so it can make for a long day. The nurse worked with all the meds and agrees with the doctor. Jim should have quality of life not be filled with drugs that make him sleep or not be himself. She won't be here very often but will take vitals and making sure he's comfortable. She's also going to get help with hospice. Friday we had radiation in the morning then the weekly visit from the radiation oncologist. We then went to the next building to do labs and an xray but it's first come first serve and it was full. We couldn't wait because we had appointments for speech and OT by 11:30. By the time the OT guy left all Jim wanted to do was go to bed. My sister came about 12:30 to see the routine Jim has before taking care of him tomorrow and Sunday till I get back from our grandsons wedding.
I learned from PT how to get Jim moved around the room with the walker and with the wheelchair. It's amazing the difference. Movement in tiny motions, having feet apart a bit, always reach behind for the arms of the chair to sit down. She had me get a special "chair" for the commode. I didn't have to use my body strength at all. I'm so thankful to learn so much and more to go when she comes back
We're getting mixed reactions. I got a call from a foundation saying it's time to sign papers on what we want to do with further "testing" which our insurance won't cover. It's testing, not an FDA approved treatment. The primary doctor wants life to be as good as can be toward the end and the cancer doctors want to experiment. Which would you rather do. I hope we make the right decision.
We have three more radiations, then we meet with the surgeon and the oncologist. We know our answer but I'm hoping they don't give Jim a false sense of he'll be cured or he'll be as good as he was before the tumor. This tumor is rare to the point no one knows what to do with it.
The next blog will be our grandsons wedding.
4 comments:
God bless you and Jim. Thank God you got a caring doctor. My Dad's oncologist let him decide when to end the meds. They knew the meds weren't going to cure him. Hospice is wonderful, so caring. They made it so bearable and made sure my Mom and I took care of ourselves too.
Dee, Jim and I are so sorry you guys are having to go through this. Praying for you both! Praying Jim is comfortable and you are taking care of yourself as well! God bless you both!
Our medical system needs to become patient focused...not profit focused;-(( You and Jim are the only ones who know what is right for you. Listen to yourselves and do what the two of you decide!!! We just hate that you have to go through all of this. Very glad you found a new doctor that will hear what you want and help you to manage things. Keeping you both in our thoughts and prayers!!!
I hear you. I have stage 3 cancer and it is not operable or, at least not to have a good result. One oncologist told me that if I went through 9 months of chemo, radiation and surgery, I might live one extra month!! Guess what? I have already lived eight of those months without all the hassle, pain and drugs! I have enjoyed being with my daughter and running around until a month or so ago, when my pains stopped me. Even now, I am not doing hospice, because they will drug you and make your life miserable. My husband had COPD and I put him in hospice and they drugged him. He was at home and, when my daughter and I told him that he had changed, we took him back out of hospice and he was like himself again. I told my cardiologist that I would rather die of cancer and enjoy my time left without being drugged and he told me he would do the same thing!!
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