Hi everyone -

I am new here... My father has oral cancer and is currently in radiation/chemo treatments. He has both a trach and a peg and is flat out miserable.

He used to be a well known public speaker and loved to give his opinions on everything! He also loved to eat out with my mom -- that was their social outlet.

So this has taken away two of his greatest loves and he is miserable -- won't do anything for himself, doesn't want to get out of bed, gets out of the shower and wants my mom to dry him off -- its only getting worse.

Has anyone been through this? Anything I can be doing??

Thanks in advance -- Jen

Jen,
it happened to most us. Treatment was a miserable experience - food tasted bad, extreme pain, leaky PEG tubes, weight loss, dehydration, nausea, thrush, trach's are scary for most people, etc. and that's just the physical stuff. We haven't even gotten into the emotional aspects, depression, anger, grieving, etc.

I lost a lot of physical strength and needed to be driven to appointments. This is not typically something one can do on their own. I had to plan on showers when I had the most energy and sit on a chair. Cancer fatigue is a well known side effect of treatment. It's not all his doing. When I would look in the mirror I didn't even recognize myself!

He can have all of these things back but he has to be willing to cope with what's in front of him each day - keeping up with nutritional and fluid intake and keeping focused on a cancer free life after this is over. It's a bump in the road. A couple more months and he'll be out of the woods.

Be an encourager. Give your mother some respite help.

Dear Jen. What your Dad is going through is so tough and Gary is right about his needing to fight [and cope] to get his strength back. There are alot of things to try to help him along the way and you can find many of them here by doing a specific search for something that is occuring right now. Gary is also right that you can be a hugh help to your Mom by trying to relieve her whenever you can. If you are in the same town, analyze how she spends her time each day and figure out what you can do to help. Dust, vacuum, grocery shop, pick up meds, bring her a decent meal--whatever! This is a one day at a time battle. Stay strong. Amy

Jen,
I live in Virginia Beach, where are you located??

Clicking on the first little Rolodex card next to someone's name will give you geographic locations, at least to the extent that people have described them on their profiles. I encourage all of you to see that this information is correct and includes cities. Entries like USA, California, etc. do not help other find you (perhaps you do not with to be found) but there are many instances when OCF has a news interviewer that would like to interview someone in a prticular area and asks us for a refferal.... I can't be of much help to them without this benign information that cannot be used to harm you in any manner. So please update your profiles.

This comes at a time when I am looking for a survivor or ambulatory patient to attend a photo opportunity for the presentation of a $33,000 donation from Heartland Dental on behalf of the foundation. I cannot be there. Over the last two months the 200+ dental practices that belong to Heartland donated $10.00 for evey oral cancer screening they did to OCF and turned it into Heartland. They would like to make a PR presentation of the check to us ASAP, and of course this is a good opportunity for them and the foundation to get the word out again about oral cancer and early detection through publicity surrounding this effort on their part.

They are located in Illinois. Effingham sits at the intersection of 2 major interstates: I-70 (east/west) and I-57 (north/south).

Their offices are 100 miles or so west from St. Louis,
70 miles east of Terre Haute, Ind., (1 hour) and about 2 hours east of Indy.
3 to 3.5 hours south of Chicago
2 hours north of Carbondale in Southern Illinois.
Champaign, Illinois is a little over an hour away
Springfield about 1+ hours away, Bloomington 2 hours

Anyone in this geographic area that would like to volunteer to accept the check, and say a couple of words of thanks, and what this money mean to us ( I will help you with this) we could sure use the help. naational pres release will be done jointly between OCF and Heartland / the person accepting for us will get some center stage time in the story. Please contact me directly.

I apologize for hijacking the topic of the thread but since Minnie's post seemed relavant I jumped in.

Thanks everyone -- I live about an hour from my folks so am trying to help mom when I can. I have a 3 year old and am 7 months pregnant and work full time so its harder to be there as much as I would like to be...

I am hoping it will get easier for both of them, it just seems like every day something new comes up (latest is he is coughing non stop so they have to delay radiation) -- if they could just have one week of knowing what to expect I think it would help so much...

Jen

Jen --

The most important thing is to encourage your Dad (as Gary said) -- try to get him to look forward to things after treatment, his new grandchild for one (!) -- maybe a cruise, or some other event in the future. Try to build some optimism as there have been studies which have shown optimistic head/neck cancer patients fare much better than pessimistic ones. Many folks have been through what your Dad is suffering and are now living normal or near-normal lives, eating out (yes!) and speaking in public as well.

How far along is your Dad's treatment?

Gail

Jen, I don't mean this to be a downer, but for your Mom's sake, you probably need to tell her to expect the unexpected every day for a while. You never know what will crop up next. It's called rolling with the punches. And while it is hard on your Dad, it is also very hard and scary for your Mom. I don't know how she deals with things, but I have felt so frustrated when I was not able to stop John's pain or handle a particular situation. Please tell her that we caregivers are pulling for her. Amy