Hi - What a wonderful site - It's is truly a great place to read other peoples experiences. Here's mine. My father was diagnosed in December '01 with stage 4 squamus cell carcinoma in his jaw (left side). He had chemo and rad. therapy, and a 10 hour surgery to remove the tumor, and replace his jaw with a titanium pin from his chin to his left ear. He had a couple of surgeries to reconstruct his face, but the treatment has left him disfigured. I'm writing here today because I think our whole family is a bit frustrated with him. It's been over 2 years since his surgery (they got the cancer 100%!) He's so different now, that we're at a loss. He used to be very active, worked construction for 30+ years, and now we can't get him to do anything anymore. He won't come to his grandson's baseball games, he won't go to family gatherings unless forced to by my mom, and he sits at home all day long reading/watching tv. He won't even clean or pick up around the house. We try to by considerate, he's been through a terrible ordeal, he's tired, he can't eat solid foods, he has absolutely no saliva left, and his neck is so sore that he sleeps in a recliner. Our attitude is, you beat it! Start living! and he just won't DO anything. Help! Is this going to get better? What do we do to help?
Don't get me wrong - I love my dad and I support him 100%, I just wish he would try to enjoy the 2nd chance he was given.

Kim

Kim,

Welcome! I am sorry to see your situation and wish there was a quick and easy answer. Unfortunately, we all have to deal with our stuff in our world in our perspective in our time. There is no doubt your dad is struggling with depression about his illness and his disfigurement. These are both pretty significant life issues and I can understand his struggles. He really needs someone professionally trained to help him emerge from his hole.

You are so right, HE HAS SURVIVED! He was given another opportunity in life that many don't get. Does he have any interests or hobbies. If you could take his most favorite thing to do and help him do it around other people, it would get him going. The hardest thing in life is to get someone out of their pity party once they become entrenched. We all have been there...some just choose to remain there.

Don't give up. Your dad is fortunate to have someone who cares so much for his quality of life.

Ed

Ed - thank you for your quick reply. I wish I could help him more, but unfortunately it's up to him to look for help in dealing with this. I will try to talk to him, though.

I have a couple of questions. As I mentioned before, he sleeps in his recliner now. He hasn't slept in a bed since his May 02 surgery because his neck is too "tight". Has any one else experienced this? Is there something the doctor can do to "loosen" it? My mom is concerned, and rightfully so, that he will never go back to sleeping in their bed. I think it bothers her more than she lets on.

Kim-

My heart goes out to you and your family and especially your dad. His survival to year 2 is really something to cheer about! You might have him contact his doctor for depression. He sounds like he needs a jump start to get him going again so he can enjoy life and there are many different drugs to help get him out of this slump. He might also consider going to a physical therapist to help him increase the mobility to his neck and perhaps alieviate some of the pain he is experiencing. There are many posts on this site you could have him read that may give him some hope with dealing with the saliva issue, too. He is lucky to have such a supporting family. - Kris

Hi Kim, it is truly wonderful that you are so supportive of your Dad and that he has survived all of this, I kind of know how he feels though, being I look different now and have a few very visible scars and sometimes people don't always understand my speech. I feel safest in my home or at Church. Sounds like he might need medication for depression. Can you get him to see a doctor for this? God Bless, Carol

Kim,

I'm sorry you and your dad are still going through this -- unfortunately, there are some long-term after-effects of this illness and they tend to ripple out to the rest of the family.

I agree with the others that it makes sense to talk to the doctors about the possibility that your dad is experiencing depression. If he goes to family gatherings and sees other people doing "normal" things like eating solid food, engaged in physical activities, etc., it can be a reminder of what he's missing out on right now.

I'd also suggest talking to the doctors about relief for the lack of saliva. My saliva level went way down after radiation and I've been using a combination of Salagen pills (3x daily) and Biotene products (mouthwash and gel) to get some help. Also, when I sleep totally flat on my back, the saliva that I do have pretty much shuts down, so I always try to have my head somewhat propped up during the night (I don't know if this has any bearing on your father's preference for sleeping in a recliner).

I hope your father can begin to get back to the things he enjoys doing. Many of us here can attest to the fact that we've found a lot more to appreciate and to occupy our time in "life after' cancer".

Cathy

I see there are 2 of these threads so I am re posting my reply here.

Hello Kim, Welcome! I am no psycologist but from my own experience the effects of this disease and the treatments affect more than just body. Many people suffer a tremendous blow to their mind and spirit as well. I would not be surprised if your father is suffering from depression. The effects of treatment could still be causing his tiredness but it might also be a problem with his Thyroid (caused by radiation). I found it a considerable amount of real work to keep ahead of physical and mental challenges, a person sometimes really has to lift themselves by the bootstraps! Sometimes we need outside help with that lifting.

My suggestion is that you get an appointment with his regular doctor and go with your father. Tell your observations to the doc. Ask for a thyroid test (simple blood test) and ask for options about dealing with his mind and spirit. There are many effective anti-depression treatments. I think with your continued support you can help him out of this.

In addition Kim, the stiff neck he has can be helped by excercise and sometimes psyical therapy. I had problems early on post treatments, but with time and stretching I have regained almost all the flexibility I had pre-treatments.

take care

Kim,

I did not have any surgery, just radiation and chemo. That was 8+ months ago and my neck is always very stiff and sore in the morning. I don't think it would be any better if I slept in a recliner...just part of life now. I try to be aware that there are several stretching excercises I can do as often as I like that will help quite a bit.

Here's some to try:

-Slowly turn the head as far to the right as possible and then to the left. Do about 5 each way.
-Slowly lift the chin as high as it will go and then bend the head down as far as it will go. Do about 5 each way.
-With one hand on the forehead pushing your head back, try to push it forward. Again, about 10 times. This will strengthen the neck muscles.
-With one hand on the back of the head pushing the head forward, try to move the head towards the back. This will also strengthen the neck muscles.
-With one hand on the side of the head, try pushing the head in the same direction as the hand. Do about 10 times in heach direction.

All of these will improve the range of motion and help loosen up the entire neck. I hope these help some. The key is to keep moving around and strengthening all muscles. The more you sit around, the less energy and more deterioration of muscles you will experience.

Ed

Hello Kim,

Like some of the other members mention your dad is suffering from depression. Going thru this ordeal is alot more than just the physical part.
Take Marks advice and get him a thyroid test. Most of us take anti-depressant medicine. It's a normal after effect of treatment. Our old lives no longer exists. Your old father is still there he just can't be the person he was prior to the treatment. Sounds like he had major surgery.

We have to adjust to our new lives after cancer treatment. I was so happy for him to survive this 2 years with no signs of a reoccurance. That alone is a major milestone.

I wish him the best, Dan

Kim,

First, I agree with the advice you have been given by the other members. It is all good.

Now, I'm going to be a real a _ _, so I'll apologize in advance if I offend anybody.
You tell your dad that I lost my 29 year old daughter to this disease. She left behind not only myriad family members who love and miss her, but a 6 year old daughter and a husband who is much too young to be a widower.

Your dad needs to get his thyroid checked, get on an antidepressant, then get out there and live life to the fullest. He has the second chance that Heather and many others didn't get. It is a sacrilege to just sit there and let life pass him by.

If after all that, he chooses to still just sit there, then my advice is to get on with your own life. There is only so much you can do for him. In the end, he has to decide he wants to live again. No one can do it for him.

Rainbows & hugs,
Rosie