Hi,
Lee finished treating mid July and still feels so lousy physically. He is so tired and has so many secretions with the trach. He is also depressed and I am not sure how to help. He has seen psychiatrist at urging of social worker and was placed on Ritalin for anti-depressant. He says he feels as if he doesn't fit in anywhere. We have tried to get out a little with people close to us and this makes him fel worse. He says he is reminded constantly of all he can't do- eat, drink, or speak normally. He isn't able to take anything by mouth and not sure if ever will be. The best they're hoping for is some liquids by mouth. He has vocal cords but speech is difficult to no tongue. I guess my question is should I "push" him lovingly to get back to some living or just leave him alone. It seems to only depress him more when he is around others. I can't imagine what he feels and I just want to help. Any thoughts?
Thanks,
Doreen

Hi Doreen,
Just a thought - maybe you could start with activities that don't require social interactions but you are around others and can take in what you want - like plays,movies, music, art, sporting events. The pressure in some of these is not on your husband then and yet there is a lot there to relate to and take in and distract from the self.
I'm not sure ritalin is really an antidepressant although I know it can stimulate a person. Maybe you could question if an antidepressant is warranted at some time to ease his way. I hope he feels better soon. It's hard to see what will bring him new life when he is still grieving deservedly what he has lost.
Peace,
Janet

I am so sorry that I have no solutions. I can tell you I was once put on a very strong old time anti-depressant as they found it reacted with the nerve centers of the spine and would perhaps leave me pain free as long as I was on it. It did relieve the pain but it also relieved any and all of my thoughts and ambitions and most of my brain cells I am sorry to add.

I went on a weaker one which did not help the pain but it helps me cope with the pain. Maybe he is on the wrong anti-depressant?

Blessings,
Barb~

I still remember the depression I went through at about the same stage. Just give him some space . He has to find his place in his new world. It takes some time to work it out. I am still to this day discovering "new" things I can or can't eat, especially in public. Do you guy's like to hike? Maybe just a very short hike, nice & easy, in a very beautiful place in the woods or on a mountain would help his spirits. Encourage, but don't push. Then again, sometimes a good kick in the ass is appropriate also! Tell him to get on this board & check it out. Erik

Hi Doreen, my thoughts and prayers are with you and Lee. Oral cancer is a double whammy. It really hits us where it hurts so much, I mean physically and mentally.
The only pain med that seemed to help me was morphine. I take an anti depressant daily (I am 3 years out). I think it has helped. Like Erik said maybe get him on this board, I know it helped me and still does. God Bless, Carol

Doreen,
I definitely would not push Lee to get into social engagements before he is ready. Things do get better, but it takes time, and the first couple of months after treatment can be the most difficult. I fought my depression by taking a nice walk every morning and giving myself a little errand or two to run each day and having a friend stop by and occasionally going to a men's cancer support group. Soon, I felt much better.

Best of luck,
Danny G.

Doreen,
I agree with Danny G., small steps. Take walks, work on any project that allows him to feel useful at home, volunteer at something that helps less fortunate people (to have him around people that need his help will boost his morale), If you are active with a church he could visit other hospitalized members. It takes time to train the mind to think in positives not to dwell in the negatives

Doreen, Also remember that your role in this journey is also stressful and difficult. My husband let his wishes be known about when and how long he wanted to be around other people[still does] I have tried to "go with the flow" of how he wants to adjust. I guess the most important thing is that he does want to adjust. If you want to vent, drop in on the "Friends" forum and chat with us. Amy

Hello Doreen,

Lee is way to close to end of treatment to be feeling very good. He is grieving for his old life and wondering how to handle his new life.
I can't imagine being a caregiver, as the patiant I know how I feel and what I can and cannot do. The caregiver has to usually figure it out on her or his own.
Please get Lee on the board, Things will get better as time goes by. Many members have been through what both of you are going thru now. We made it and I know you and Lee can to.

I also didn't want to be around anyone for a few months. Time to heal and get my head on straight. Didn't want or have any visitors at the hospital during the 17 hour surgery and afterwords in the hospital. Wife and kids only.
Some golfing buddies showed up about 4 days after surgery, It made me feel uncomfortable feeling so shitty, not being able to talk, hair not washed, teeth not brushed very good, drugged up for pain, etc.
I know they meant well but thank god once they saw how I looked and felt they didn't stay long.

All my Best, Danny Boy

Doreen,
My brother's surgery was at the end of January and sounds very simular to your husbands - Stage IV, removal of tongue, lower jaw, part of upper, part of throat, lymph nodes, floor of mouth, so I can definately relate to what is happening in your life. I would definately check and see if Ritalin is the right course of treatment. Of course your husband is feeling depressed, his life has completly changed in a very short time. Keep in mind that it takes most anti-depressants a month to begin working. David also had problems with secrection and "plugs" caused by the trach. We were finally given a "breathing machine" we called it - it just created humididy that came up through a hose and into a mask that went over his throat. Doing this 2-3 times a day for 15 minutes at a time helped more than anything, but the problem still remained to some extent. There are also saline drops but they didn't do much for him.
When my brother lost his ability to speak we bought him a palm pilot. They are small enough to carry everywhere with you (just don't set on them if they are in your hip pocket - he learned this the hard way). You can use the little pencil to write on the screen or you can type the words. There is a program you can download on to the palm that will "say" the words he has written. I can get that info if you want, though my brother just preferred to write his notes. You can also put games (solitare, etc) or other things on it that can help occupy their minds when there's nothing to do. It also affords some privacy. I know when David would write things on a paper note pad people were always picking it up and reading past notes so nothing he every said to anyone was private.
As for being around people - maybe he has a good friend who could come over and just take him out for a drive, for a walk, or just watch a movie with him - this helped Davy a great deal and kept him from feeling completely alone. Davy never complained of not feeling "normal" or being bitter about what he had lost. He was just so glad to be here. Of course, I'm sure he felt a devestating sadness at his loss to speak and eat and sometimes I wished he would share it with us so he didn't have to go through the pain alone. I don't know how old your husband is, but I assume he is relatively young. Help him focus on all he still has. Also, it can take months for his body to rebound from the treatments and surgery. I know my normally active brother rarely left his recliner for about 3 1/2 months following his surgery. He just physically had no energy or strength. Please keep us updated on your husband's progress and if there is anything I can do, don't hesitate to ask.
Tonya

Thank you all for your thoughts-some good and much needed advice. I wish there was a manual! On a good note, Lee has posted for the 1st time and I'm hoping he'll continue. He had non-hodgkin's lymphoma 10 years ago and was so different-it never got him done and he never believed he would be anything but cured. This is a whole different animal.
Tonya, thank you for taking the time and strength to respond. Your brother sounds like a wonderful person and I'm sure he was proud to have you for his sister.
Thanks everyone
Doreen

Doreen,
What does he like to do that doesn't require interaction with anyone other than you and nature? Take him to the beach. A stroll in the woods. Sit on your porch and watch the birds. Do a puzzle, read some of the the same books.

I am a total laryngectomy but still have my tongue so can talk. However, my voice is getting weaker so don't use it a lot. I never suffered depression after either bout with cancer but did suffer an immense amount of fear after laryngectomy. It wasn't until I went back to work 12 weeks later that I gained any confidence. I did spend those 12 weeks reading and sitting on the beach and jsut enjoying nature since it was the fall. I think that helped. Actually I was supsoed to go back to work after 8 weeks, but tripped over a chair the morning I was returning and fractured my pelvis in three places. That landed me in hospital for 5 days and then on crutches and cane. Enough to piss off the good humor man.

Anyway, I wouldn't push him into company that requires eating and talking until he is ready. If he has problems with mucous from the trach, concerts etc can be troublesome if you have to cough up goop.

What type of neck gear does he wear? Does he have a humidifier? What specific problems is he coping with. I know we are being treated at the same facility and even have some of the same drs. Email me if you like. I will scheduled for an appt at 3:15 on the the 12th. Look me up if you also happen to be there.

Take care,
Eileen