Just feeling sorry for myself

On May 24, 2012 10:16 PM tristeve wrote:

Hi paula,

I certainly know how you feel. I am three years post treatment and I am also a buisiness man who eats a couple times a week. I also have difficulty eating. I have to drink allot of fluid, small bites, and eat very slow. I will cough and food migh go flying out of my mouth. At first I would not eat with someone unless they knew me well, honestly I was emabrassed. Now I tell folks what happened and warn them it id dangerout to sit in front of me . because I eat slowly, i just order a small portion, even an apptizer. By now, I know what i can eat and what is way to difficult.

 

It is still hard to participate in conversation because I am chrewin my food so much but what the heck. It is the way it is, the new normal as folks say. So get out there and eat with people, let them know what happened. You will get more respect than you can imangine. I will even have a business lunch and just have ice cream

. Most folks get it, those that don't i just say screew them. There are so many compasionate people out there. . Just know what is on the "easy" list, and go out and have fun.

 

Steve

I have to second what Steve says, especially about ice cream!  Practically every place you eat will serve either soup or ice cream, and when you're lucky you can get both!  I have even gone to a fancy restaurant where my cousin got the chef to whip something just for me, as there was nothing appropriate on the menu.  I think he took it as a challenge.

But oh, my gosh, they had wonderful ice cream desserts! 

And ice cream is also very good for cheering oneself up when feeling down in the dumps--so go for it.  My favorite right now is vanilla with pureed fruit on top--I can tell myself it's "healthy!"

Susan

Hi Paula

i can relate to how you are feeling and am sure that everyone else that is on our head and neck board can also.  It is something that is tough to get your head around, but as with everything it is doable!!!  (reference to poppop's reply)  One thing I try and keep in my mind when I am able is that I will not allow cancer to take away from me the things that I have control over.  I totally agree with the reply where someone suggested giving yourself permission to be down and time limiting it, that is a trick that most people don't know and don't use enough.  The trick is to get down and dirty and grovel in self pity until you are ready to come out of it.  It really does help and the time limiting means you will do it healthily or people around you will start dragging you out of it.  It is a good idea to let people know what you are doing and when you will be out and about again.  

I am currently having to readjust my diet to suit my job so that I don't drink so much water when I eat.  My water consumption is up there way too high and I need to cut it back.  So, this morning I figured I would save the treats for the weekend and eat what I can and like and drink as much water as I need to.

Just remember, don't give cancer anything you don't want to give it!!  

All my best to you.

Julie

Hi Paula,

"chin up"...I can relate to how you feel.  I was diagnosed with throat cancer in February, 3 weeks before my youngest daughter's wedding.  We moved to Australia 4 years ago, and she lives in Canada and the wedding was in Mexico.  It was very difficult to give the news to my 3 daughters and other family members in Canada that we wouldn't be at the wedding or making our planned visit back to Canada after the wedding.  I have been through the usual side effects of chemo and radiation...loss of hair, a couple of weeks in hospital for a high temperature and reaction to meds, dry mouth, trying to eat food that has no taste but when you put it all together, I'm still alive and have a reasonably good chance of surviving all of this.  I have my PET scan in 6 weeks and I have every intention of being on a plane back to Canada in the fall to see my daughters, new son in law, and grand daughter and another grand baby that is due while I'm there.  There is just too much to look forward to to let a sore throat get you down.  It will get better in time.  Even if you can't eat what everyone else is eating, there is no reason not to get out of the house for dinner partys or anything else on your usual social calendar.  I have been so lucky to have so many friends back in Canada checking in with me by skype or facebook everyday to see how I am doing and giving me loads of encouragement.  I am a very lucky guy,...just give those friends of yours an opportunity to be a part of your life...good luck Paula !!!!

Paula, I hope this message finds you well and happy. NIH had a study in progress for using stem cells to stimulate saliva glands back to function. I spotted it three years ago. They were only accepting patients who are disease free and 60 months out of treatment. I will look for more information and see if I can make an inquiry. If I am not mistaken, I think I am experiencing gradual improvement. Being 42 months out of treatment has brought so much change. Best, Mark

On May 24, 2012 8:34 PM paularae wrote:

I am sitting home alone because my husband has his company dinner party.  Due to my dry mouth, I am so limited in what I can eat.  I know all these people from before my cancer.  No one seems to understand the limitations that not having saliva can do to you.  I am so tired of having a sore throat.  I am tired of missing out on things.  You might say that I am choosing to miss out, but seeing all the normal eating people eat, laugh and talk makes me miss my old life.  I wonder why doctors can't figure this out.  Either not important enough.  Theres not enough of us head and neck cancer patients to warrant any studies for dry mouth.  Life sucks, I am a burden on my husband and friends do not like to be around me.  Sorry to be so depressing. 

Paula

 

Paula; I'll tell you what has worked for my hub who was diagnosed 8/30/09

Fluoride- berry flavor; mint was very drying to him

Evoxac; switched to salagen; has been off of it for a year

Biotene products- he used the toothpaste until a few months ago. I bought it 1/2 off at Walgreens; he prefered the gel type. I also bought the mouthwash

He chews a 1/2 piece of Stride dark blue gum as needed

He always has water with him.

He made sure to take care of his mouth with products that were not harsh. We lost our health insurance last year & he decided to get rid of his prescriptions except Nexium (generic) & cutting out the scripts also seemed to help because some cause dry mouth. If you can try to use the biotene products; it may help. He's back to using Crest.

For the pain; the only thing that worked for him was Actiq pops because they coated the throat. He was using them for a full year after treatment. What he liked was he could have a few licks & it would take away enough pain; he liked it better then pills because he could control how much he used.

I know about pity parties because I'm pretty disabled myself. People just do not understand.

Thank you all for your positive messages.  I am trying to get involved with hanging out with my old girlfriends.  We went out to a hibachi grill.  They had lots of different sauces.  I got shrimp and scallops with extra sauce.  All the talking did cause me to get a sore throat, but I did have fun.  I will be going to Florida on July 4th.  I am worried about getting the food that I need.  I guess the first stop will be the grocery store.  Where can I get Actic pops? 

Paula

You need a script

http://en.wikipedia.org/wiki/Actiq

Paula,

Just remember soup and ice cream!  And you'll be amazed what you can find.

We just arrived in Hawaii today, and I'm just going to enjoy myself, eat whatever I can, and get ice cream to make up for it if I don't get enough.

Have a ton of fun in Florida!

Susan

Hope you both enjoy yourselves!!!

Julie

Never feel like this! You fought the fight and won!

Be you! Beautiful You!

My husband battles the same issues and what we found helpful was a prescription called Evoxac 30mg 3 times a day--it helps your salivary glands.

Blessings and Keep the Faith!