Dear Vicki Lynn

My heart goes out to you. You are helping yourself here by acknowledging how you feel and getting it out to people who understand. You sound like such a wonderful person who has had such a tough deal.

I'm glad you have an extensive medical team on your side. Do they have a specialist nurse who could visit and help with the practicalities?

You are in my heart Vicki, with love from Helen

Hi Vicki! Again, my heart goes out to you. I hope my tone didn't come across as if to say you weren't trying, cause I know you are! I understand about the radiation damage to your throat & neck, but what about the site on your leg? You said it wasn't healing either & you couldn't take showers because of your leg & peg site. I was showering early on with my peg & forearm surgery & skin graft taken from my thigh. I could only shower from the chest down for a few weeks until the trach hole sealed up. That was a challenge & I did get water in it a couple of times & choked like hell! I wasn't suggesting you drink water with the trach in. I was talking about my rule breaking bad attitude! Keep yer chin up!

Erik, no no. I am so sorry if I sounded upset with you. I truly am not. I can't get the leg wet. The site where the skin graff was taken has ulcerd so I have to keep it dry and clean. Yes I could wrap it up and all that but why go to all the trouble..I will just sponge for now.. I will get this all taken care of tomorrow!!!!I will not stop until I do. Thanks for listening to me..Always, Miss Vicki

Miss Vicki,

You must be a very patient person. I have read many of your posts to other people, but I didn't realize you had these things for yourself to deal with. I would ask your doctors one more time with your husband or another friend to communicate that you NEED to have progress. It seems they are ignoring simple things and to me that means switching doctors (or at least threats of that) Demand a referral if you are not satisfied. I think it is a shame that they didn't help you with mouth opening issues. That is such a common side effect and for them to ignore it is simply poor care.

You are a remarkable person.

Miss Vicki,

Wow, what a long road you have had to travel! My heart goes out to you. Push your doctors to referr you to physical therapy asap!! There is no reason why they can't help you work those neck muscles. Deep tissue massage can make the hardness in your neck losen up a bit. Although it hurts in the beginning they can work wonders for you. Message can also help losen up the jaw. Give it a try! - Kris

Miss Vicki,

As I read your post, I am angry! There is absolutely no excuse for the treatment you are receiving. Six months is way too patient for you to just sit around and (quietly) ask for help. You should have your medical team set up some home health care agency to come and do everything you are asking for. You deserve to have physical therapy to begin the process of excercising your mouth/jaw muscles. They can provide some type of assistant to help you bathe, help you clean your mouth to prevent further complications from infections/bacteria, etc. You should not have all the responsibility to monitor your progress and develop your own plan for rehabilitation. I know the squeaky wheel gets the grease but do you think your lack of squeakiness is keeping you from getting the grease? You have a sense of where you should be by now and if you think you should be working with a physical therapist to re-learn the process of swallowing, opening your mouth, etc., demand it.

I can not imagine how you have made it the last six months. I know you have been through so much since 1989 and the doctors want you to heal but your number 1 and number 2 in the your first post seems very reasonable after waiting patiently for 6 months. You were told 3 months to PT and you should hold them to this. I am incensed at the PEG tube story as well. Do not settle for this type of treatment from anyone in the medical community.

That is my two cents worth. I know how tough you are and all you have been through but I do not want to sit here and hear you suffering so. I would be glad to make some phone calls for you if you need it. Just let me know.

Ed

Well I thank everyone for their input. I guess I just had to get mad. I felt so bad for always telling the doctors that I wanted more, when they were always telling me to be patient. Well no more, I am pleased to tell you that my speech & swallow theraphy starts thrusday. YEAH!!!! I just needed to get mad I guess. Thank you guys and gals for giving me that extra push I needed. Perhaps now I can get on with my life instead of sitting here watching everything and everyone pass right by me.....Love to all, Vicki Lynn

Yes Vicki, get mad..........kick some ass and take names. It's your life, you're the one that has to suffer for their ignorance. I remember when I was in the hospital I had a raging urinary tract infection, which brings alot of pain. My husband had to work that day so my mom stayed with me. Not one soul at that hospital was listening to my mother so I called my husband. I'm a former nurse so I knew that a simple perscription from the inhouse pharmacy would take care of my pain. My husband spent one hour calling, NONSTOP, the nursing desk on my floor. They had the prescription but just would not go get the meds. When they finally figured out that he was not going to let up I had my meds and within a few hours had such relief. The nurse was even begrudginly nice about it, laughed with my mom about how I was the talk of the nursing station and that I had best get good care or my husband would BE there, lol. I've had to have one biopsy since my surgery, it was in October. They told me the results would take 3-5 days. When that 5th day came you can bet I had my results.
We must always remember that our doctors WORK FOR US AND ARE RESPONSIBLE FOR OUR CARE. I'm thrilled that you got the speech and swallowing taken care of, keep at it until you get EVERYTHING

Thanks Minnie, Well those that know me, before this, I never waited at a doctors office, i would give them 15 minutes after my appt. time if they didnt have me in a room with a doctor, I would leave. I don't mean to sound like a snot but my time is just as valuable as theirs is. I do not apprecate it when they double book appts. But since I have now voice now, there is only so much I can do, you can give them the paper that I have wrote on, WhOOPIE!!!!!!!I am just so tired of all of this. Feeling like crap everyday but trying to keep moral up. Including my own. Trying to function in the new world I now live in. My husband GOD BLESS HIM. Working non stop, we have our own business plus he works full time. I don't know what I would do without him. I was in love with him before all this, I love him more and more everyday. He is scared tho he tries not to show it, I am scared but I do tell him..God Bless us all. ALways, Vicki

Hi Vickie,

I am SO glad that you'll be starting speech / swallowing therapy! That's a big step in the right direction. I just "graduated" therapy after spending 16, 1 hour long sessions with my speech therapist who became a very special person to me in my fight in trying to live a new "normal" life. I know it will be a lot of work and will take a lot of patience, but believe me when I tell you it's all worth it. I'm living (and talking and eating) proof!

Hugs,

Nancy