Little Sister,

I know all of this must be terrifying for your entire family. We are told to try and live a life that resembles some sort of "normalcy" but we know deep down it will never get there. That's the first big shock of all this. Add to that the reality of facing death and there is no logical reason a person would not feel anxiety and depression. Throw in a few narcotics, steriods, etc., and the depression is almost a given with anxiety coming and going. When treatment is going there is a whirlwind of activity and controlled chaos. Suddenly, the world comes to a screeching halt and you get to just sit around and wonder...and then worry. The stillness in the air is deafening. I tell everyone I know going through treatment to fill your presence with people and things to do when treatment ends because everything stops so suddenly that depression and anxiety sets in quickly. In my case, a dear friend came over every day while I would have been home alone and just brought a movie to watch. I remember so many times we would talk as the movie started and then he would be waking me up to say he was leaving. I found that it was easier to sleep knowing someone was there "just in case". It calmed me enough to sleep even though I doubt if there was much he could have done had their been complications.

I know it is difficult to see your brother like this but it is much more difficult for both of you if you avoid him. He is now starting to come out of his shell and he needs someone close to him to share his fears. Does he have a good friend from work that he could confide in?

The other thing you could do is try and make a list of what ails him physically. Take the worst thing first and peck away at the list with the doctors so he can see some type of accomplishment towards feeling better. It is truly a journey of a thousand miles taken a step (or a half step) at a time. Progress by the day is not something you will notice, especially as many times as your brother has had to go back and start over.

Keep the dialogue open, find someone he knows and trust to check in regularly (like at least once a week) and make sure the whole family gets together even if for a few minutes a week. Surrounded by love will ease the soul and the heart immensely.

Ed

Hi Little Sister,
I read article in SPOHNC yesterday about healing and I think it might help you brother. One of the things it stated to help the healing is concentrate on the parts of you that are working, not the ones that aren't. For people with H&N cancer, this is the legs. Buy a pedometer. Go out and walk. Initial goal is 5000 steps a day. When you reach that, try to increase it by a 1000 each week until you reach 10,000. That sounds like about 5 miles to me which is a lot. It also stated that a bedridden person loses 1.5-2% of his muscle in the first two weeks and can lose as much as 40-50% in 6 or more weeks. That's scary.

When I had cancer the first time, I bacially went to rad, PT and home to bed not because I was or tired, I was just bored and very cold all the time and bed was the only place I could get warm. Had I done some exercise, maybe I wouldn't have been so cold, but the thought didn't occur to me. I decided to sleep through treatments and lost a lot of muscle even though I only lost 4 lbs. Second time round, I only had surgery, so did walk and keep active and didn't have the muscle loss problem.

For your brother who is a cop and used to being very active, I would think getting out in the great out of doors doing something, walking, gardening, fishing, golfing, whatever he likes to do would help his depression and him heal better. You don't need to kill yourself exercising, just take a breeze around the block and smell the roses, talk to a few neighbors and get some fresh air. I just noticed where you live and guess for a while he will be making snowmen, but you get the idea. Concentrate on what is working. Exercise is supposed to improve the immune system. Hope that helps.

Take care,
Eileen

Hello. This is little sister's 14 year old daughter. Im so glad that my mother has found this site. My mother (and the rest for my family) is so devastated by what has happened to my uncle. I want to thank you all for your love and support. Whenever my mother reads a new meaningful entry, she calls me over to read it. I can also say for myself that this blog as helped me also. When i see my uncle in his condition i want to run to my room and cry. He used to be so energetic and full of life. Now whenever i talk to him i see the sadness in his eyes. I feel like he's isolated now that he can't speak and it just kills me. I wish there was a way that i can make him smile. I try...and i try..but i don't know how. I feel like if i try to make him laugh he wont laugh and it would make me feel worse.


Furthermore, I just wanted to say a big thanks to all those who have helped my mother and I. In my prayers always

xoxoxo

Glad we have been able to help.Its a truly scary thing this oral cancer,and my husbands 17 year old daughter struggled so hard not to let her dad see how frightened she was at seeing him so badly disfigured.Perhaps the fact that you can see so graphically what is happening to your loved one ,is the hardest thing to bear.Just fix that smile on your face and save your tears for the privacy of your room or your mums shoulder dont let him see how much you are hurting.I know its hard,but treating him normally is the best gift you can give him.

love liz