OK, now for the unpopular (man's) perspective. FIrst, the home health care folks may be hiring cheap labor to keep their costs down so they can provide service while fighting for reimbursement from the insurance companies. Second, your friend may be doing you the best favor of all by trying to treat you as if you don't have cancer. Any opportunity to resume some type of normalcy is a good thing. I went to work 3 weeks after treatment because the company was struggling and trying to can me to save money. (They still owe me over $20,000 wages.)

Your husband should call the company and tell them he took the time to tell them exactly what they should do and they blew it. Inform them it is not acceptable and to call him if there is any problems since you can not talk. Give them one more chance and find their replacement. There are many companies that are trying to survive by giving excellent customer service and they don't appear to be one.

Last and the hardest to say. Find a good way to vent your anger. Teeing off on everybody may feel good temporarily but long-term it may not be the best way to get things done that you need.

Everything you describe is about the same as I experienced and very similar to what everyone posts at your stage. It will improve but it won't be overnight. I can show you the picture of me with the raw bloody neck when my out of country relatives visited. It was a horrible sight as I look back on it and they were just shocked when I picked them up since I never mentioned anything to them until then.

I vividly remember sitting in my office, 400 miles from home, determined to not go back to my motel. I filled up a trash can a day with the nasty, thick brown goo. I vomitted up anything I ate or drank, ran an IV pack all day at work, used TPN IV feedings all night long to keep up my strength and told everybody I was just fine. I drove the 400 miles so I could lug an SUV packed full of medical crap. Was it fun...no. I just had to help the family financially so when the treatment was over, we weren't totally in financial ruin.

Jen, you can do this. It is about as bad right now as it gets, maybe a bit worse around the corner. You may dislike me for the candid responses I have given you but it is really meant because I want you to see the other side, if you will. Heck, I will even come visit you so you can kick my ass up and down the street like a tin can, if it helps you. And, I know you don't want to hear this ,but someday, you will look back at your home health care delivery experiences and chuckle. I still remember the bozos that called me and questioned me about stuff as I gave a silent, muffled yell in the phone just to hear them keep saying,...WHAT??? WHAT??? WHAT???. The amazing thing is that we only had to replace the batteries in the cordless phone when I thought I busted it.

Email me if there is anything I can do to help (if I haven't offered enough already eek

There are a few things you can do to help you sleep and even for the sores on the neck that won't hurt as much.

I really do care...

Ed

SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023