Nice to hear from you. I am so excited upon hearing your latest PT report ! Best news I have heard all week. I think you are on to something there in that perhaps ALL warriors of these after effects should take heed. Why is this route not standard for all patients ? It is such a shame that patients are almost completely cut free from medical information when they finish chemo and radiation. We all seem to be swimming out there on our own.

As I have told you no one ever told me about fluoride trays or when I went to the nephrologist with kidney stone problems I was just told you need to do this and this.....look it up on the internet because I don't have any handouts on it.

Come on, that is laziness. I was the clinic supervisor in an over 100 provider office for many years and it does not take much to get file folders, assign a filing cabinet, print out handouts and have them available for patients. So many people won't follow through or grab bad info from bad sites. Perhaps things will get better with the current healthcare system soon because right now most offices are more concerned with how many patients did we see vs how many did we REALLY help. Sorry, my soap box is very tall on this issue.

You are so right about instilling strength of character in your children. I can tell it is important for you and what a gift you are giving them. I see the protesting going on yesterday and today as some did not get their way and sadly shake my head. There are some universities (even a law school) giving students the day off because they were "traumatized". It has gotten so crazy. Life is going to be so tough for them.

Ahhhhh, Thanksgiving thoughts.....I so agree, a two hour window would be great. I have had 3 people call this week to tell (not ask, mind you) they are planning to come to our house for Thanksgiving. Now where were they all year ? I guess that is my jaw PT, cause it keeps popping open every time I think of it !

Still at my brothers as he plays pancake turning from side to side then on his back every two hours. Bed sores are a super concern for quadriplegics as the circulation is so compromised. So, healing is a very slow process. When I am not turning him or making coffee or cooking I have had a great time playing on line (poor Amazon) ordering Christmas gifts as long as the internet stays up and the checkbook doesn't completely collapse. I have to be better this year as I usually get so excited to give the gift that I do it early then I am out there with the masses on Christmas Eve trying to grab something to wrap.

You mentioned your grandparents only had a 6th grade education but they must have had a lot of common sense and that is what really gets you through life I feel. We have known guys who had master's degrees who could not tie their shoes or make a grocery list let alone balance their checkbook. Yes, usually education does get you a better job and living might be a little easier but common sense, a pure heart and honesty tops it all. My parents wanted each of us to quit high school as soon as we could so we could go out and get a job and hand them our paychecks. I was the only one who graduated from high school and then I went on to college after I got married. I worked all thru high school and handed over my pay check as well. Only once did I cash my check and bought some shoes with some of it......there was hell to pay for that one till I got my next paycheck for them.

Yes, again is misspelled, missing the second a because when I signed up long ago they would only let you use 10 characters. Funny thing when I found my brother after about 15 years his e-mail address was something like up at night we couldn't believe it !

Take care and keep that PT rolling !

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Thank you!!!

Jo -

Hey! Totally agree with the "swimming on our own" summation. I do understand that the ENT's and Oncologists are entirely focused on their portion of the process and once complete, their talents are needed for the next patient. However, that doesn't mean that they couldn't provide a better transition to the next step in recovery.

But, toss in the insurance issues and perhaps not having adequate PT services available either within their system or in some cases within a regional area and the whole concept gets very convoluted.

I guess there are no easy or good answers and therefore any recommendations regarding follow up therapies are contingent upon each particular ENT.

(I've found that the Physicians Assistant is usually a better starting point regarding potential follow up therapies.)

On that note PT is proceeding well. Jaw movement is improving and as that mobility increases, communication improvements follow. Head mobility is also improving and while the jaw and neck cramping is still ongoing, they are slightly less frequent.

How is your PT progressing? (Not including responses to self invited diner guests!)

How is your brother doing? Hope his skin has started to recover.

Any progress with getting a pump? I'm curious to hear if it helps increase your daily calorie intake.

Enjoy Thanksgiving!

Hi BJM, was getting concerned about you. Was afraid you were so busy with day-to-day that you were not taking time out to relax, read, and write. Or your dog was requiring a whole lot more walking.

On Sunday we finally talked my brother into coming to our house so we could take care of him. It is SO nice to be home after 3 weeks. But, he is loads of work, not his fault just part of dealing with a quadriplegics needs. The bowel and bladder care added to not being able to reach anything that is within arms length while he is flat in bed makes things pretty rough. He is healing well and should be able to go home on Saturday we are hoping. He is fighting with the VA for a new special wheelchair that he can lean back every few hours to almost flat. That will take pressure off the hips and butt. It was approved in July but the VA is never in a hurry to do anything. We are hoping it is delivered very soon.

I have been baking up a storm....throughly enjoying it but very worn out tonight. I think I hit a brick wall but it is 2 am so I made myself turn off the oven and almost crawl to the recliner. Got brave and tried a few new recipes but have to wait till Jerry wakes up to find out if they are "keepers". He is my taste tester now, and thank goodness he enjoys that role.

Yes, work is needed on Doctor/Patient transition. My oncologist said I did not need to see him anymore a couple of months ago but I said oh no you don't get rid of me that easy.....I still have issues due to the chemo and radiation, a port and a feeding tube. My FP is leaving her practice the 1st of Dec and I am trying to find a new FP although she has been pretty much useless anyway. After filling out scads of paperwork for 2 FP offices that then turned me down as a new patient due to my insurance coverage this leaves me with only the kidney doc who is worse than useless.

Having worked in Doctors offices for many, many years I do so agree with you that most PA's are great. They are so much more through and whatever they do is also signed off by their preceptor. It's as if you have two sets of eyes on a problem.

I was more than elated to hear your PT is going well. It must be wonderful just to have more jaw movement and head mobility increased ! Now to lessen the jaw and neck cramping but you are even seeing improvement there too. Such great news !

I have not gotten anywhere with securing a pump. I called the DME and they said I could only have a pole for gravity feeding with my insurance. I say baloney to that and have next to no faith in Lincare, my DME. They will tell you anything that suits their bottom line. They even told me I could only have canned nutrition such as Ensure when I asked for Real Food Blends or Liquid Hope. I knew better than that. I have been busy with my brother and have not checked it out. Tried to when I got the port flush at the oncology office on Monday but the nutritionist was out that day. Got to work on that next week. Since my FP was writing my oxycodone script I need to find another FP before I run out. Now THAT is scary.

Good luck reading this, I did not proof read, to sleepy !

Wishing you and your family a very Happy Thanksgiving !

Jo -

Busy would be a slight understatement!

How did the search for a new FP turn out? (Hopefully well.)

You are correct about the pain meds. I do worry about the RX being transferred to another Doctor not as familiar with my history.

Is your brother still improving?

How was Thanksgiving? I was able to get through it without any major issues! (The food did smell and look great though!)

Bit of a plateau with the PT. I'll work through it.....always have