I have been visiting this site for some time and reading everything I can. Miss Kate was a great help when I first found this site. She gave me hope. I need more. My soul aches for my brother. He had a total glossectomy in September after 2 years of removing bits of his tongue and going through radiation. After the surgery we knew that his life would change and I think we all accepted. Even with his trach and g-tube he began to speak. Although it was hard to understand at first, we were getting used to it. A couple of weeks later his swelling was worse and he began to have "choking" episodes. After a pet scan, the cancer was discovered again under the new floor, which was created from leg muscle and later replaced with one from his chest.(1 week after surgery). He began his 3 rounds of chemo last month and has fallen into a deep depression. He was an active father and a police officer. Loosing his job has been very hard. I tell my mother (who cares for him) that his anger and depression will pass with time. I do this for her own sanity. I don't blame him at all for being angry. I am asking anyone out there: What words of comfort can I give him? He seems to have lost hope and does not want to hear about having faith. My family prays for him to have the strength to beat this but I am afraid of the reality of this horrible "thing". My prayers are with all.

Hi little sister;

Well my heart goes out to you. Its got to be excruciating and torturous to watch yur brother be so uncomfortable and so unhappy and feel so hopeless about his situation. I wish there was something that could alleviate his sense of dispair. I cna'timagine what it must feel like. I think on paper we all think we'd act one way but who really knows? Illness sure doesn't play out like we think it will... its not like in a movie or a tv show.. its like your own bad personal b movie ....

The thing is with all of his surgeriess and now this new cancer and the start of the chemo it has got to just feel beyond unbearable . I don't think anyone could blame him for being extremely extremely angry. Its a really shitty hand to have been dealt especially since he's already been through so many surgeries and treatments.

I think more than just being angry he's very very frightened and absolutely terrified.I know I sure would be and I don't know how I'd act... You and your Mom are doing 100% exactly what you should be doing... Supporting him - comforting him and trying to be positive and keep him mentally and physically strong and that is all you can do really. that and try and find things that he likes that are distracting. It isn't an easy task- Being a caretaker for someone in your brothers situation is very very trying and hard - so difficult. I think you and your Mom need to remember to reach out to friends and other family members to get support for yourselves as well. Its easy for caretakers to lose site of thier own needs.This is SO tough and draining emotionally and physically...you guys need to be able to take a break - have other people help run errands--- spend time with your brother- distract him so he won't just focus his frustrations on his immediate family - you know how it is when you are hardest on those who are closest too you.

Are you religious at all? What about his police force--- are there old friends of his that could help? I know maybe he doesn't want to see some people but you'll be amazed at how much friends and coworkers WANT to help out. He might even find it a comfort to have some old friends come by.


Well I hope maybe some of these ideas might be able to work. Just remember to get relief for yourself and for your Mom -- its a tough thing to take care of someone in your brothers siuation. I wish he would be able to heal sooon and beat this once and for all and that this wasn't so hard on him and that he had some comfort that things would get better.

He's a very brave person.



Praying for him and hoping things improve. FEel free to write me anytime!

Kate

Hi little sister.Glad you managed to hook up with kate.i am still around if you need and ear...or two.

liz

Kate, That was an excellent answer and from what I can see, you covered all of the bases. Amen to misskate

littlesister,

I haven't had to deal with anywhere near what your brother has had to deal with but I know I have had my own moments of anger and despair. I don't know if there are any words of comfort you can offer in a situation like that other than to just be present with him and whatever he is going through. I think it can be a great gift to someone in such a lousy situation to simply acknowledge how much it sucks and not try to make them feel anything other than what they are feeling--even if it is anger and despair--just being with him while he is feeling that could be the best you can give him.

I also agree with MissKate that this sort of situation is really really hard on caregivers and you should be looking for your own support right now. Your presence won't be of value to him if you are exhausted and full of despair yourself. If you belong to a spiritual group such as a church or some other group that could support you and him, don't be shy about asking.

Nelie

First of all, thank you all from the bottom of my heart. Your words mean so much to me because you all know, to some extent, the situation I am in. Miss Kate your words gave me piece of mind. Your right EZJim she has a way with words. Cookey, you were the first person I spoke to on the other site and you guided me to this site. Thank you for offering an ear or two . Nelie you made me think of something I had never thought of. When people ask me about my brother, I hate to relive all the horrible moments of dispair and anger. I just feel like I need someone to listen like you all have. I never thought that this must be how my brother feels at times. I will turn to my church. I pray every Sunday to give him and my mother the strength he needs to fight this. I do need some support because lately I do not want to visit him becasue it pains me so much to see him angry and scared and my mother terrified and worried. I am all they have and I need to step up and be strong myself. Thank you all for your support. You are all in my prayers.

Little sister,
When a person who is used to being responsible for their own actions and decisions is faced with uncertainty and lack of control over even the most ordinary daily functions and decisions the result is great frustration and anger. It is comprable to a king being forced to be a stablehand who just cleans the stalls and feeds the horses. As a police officer your brother dealt with life threatening choices as a matter of course but he had framework for making those tough decisions on the fly. Now he has lost that and is at the mercy of the unknown and his mastery of his own life has been lost. Also being inside when you are used to being on the go is depressing whatever the reason.

You have received some excellent advice here. It is very important that both your mother and brother have some pampering and distraction. If the TV is always going - unplug it and get some silly videos to watch, the stupider the better. Elmer Fudd, Casper the Ghost, Andy Hardy, Roy Rogers, Monte Python, I Love Lucy. Get out old family photos and try to figure out who everyone is. Start working on a family history. Get some games to play. Try to play music with out words. It doesn't matter if it is classical, jazz, rock whatever he likes. Take your mother out for a ride to nowhere, perhaps to a nice park, water area or pretty neighborhood. Give your brother some problems to solve for you, ask his opinion about something in your life. Do whatever you can to bring variety and joy into his life.
Treat yourself to something like a really cushy robe or some extravagantly expensive candy. Find something to read, watch or listen to that will take you into a different world for at least an hour.

Malka,

Thank you. Your words were realized today. Before I read this I went to visit my brother. He had a headache but wrote down that he was having anxiety attacks and that he worries about our elderly parents. I let him know that I was taking care of them and that they were strong with positive thoughts. He then went on to say that he is scared not physically but emotionally and that he had never had these feelings before. He was sooooo strong before all this. We lost my grandfather in 95 to cancer of the larynx. He too was a strong, hardworking man. Funny how niether smoke or drank all they did was work hard for their families. It is just so surreal to me. Thank you for the ideas I will be trying them. He just wants to feel better and he hasn't. I told him we looked like a ten (10) the other day and he was puzzled. I told him I was a fat zero and he was a skinny one. That made him smile. He has lost so much weight. I laughed when you suggested I read. I am in a reading specialist masters program and the class I have now has me reading 10 books a week!! Not to mention my student's work and my own 4 children's work!! I am busy. Thank you again. By the way, I love you picture.

Sometimes when you don't know what to say just listen even when the other person isn't saying anything. We went through this with both my dad and my brother. And now I have it. It is fusterating to think that my mother who now is 74 has had to watch three of her family members go through this. I am more concerned about her pain then my illness. So be strong for your brother be strong for your parents and God knows be strong for yourself. I wish you and your family happiness and strenth. Brenda

Hi Little Sister,
I have two brothers, so I know what it's like to love a brother. It's close to how we love our children, we are caretakers to them usually.

I had my first cancer four years ago, had my jawbone removed and radiation. The cancer came back on my tongue in August, so had 1/3 of it removed on Oct. 4th. So far, so good. But, I'm back to living in that "limbo" of monthly visits and constant worry. I learned some lessons from my first time around, so this time I've applied them, which is difficult but doable. Trust me when I tell you that your brother needs, and I mean NEEDS someone to talk to him about his fears AND about his fears of dying and what will happen to his family. I needed it so badly but didn't want to burden my family with it. So I started writing it all in a journal that my rather nosey 26 year old took the liberty to read because she felt I wasn't opening up about how I felt. She spent hours talking to me after that, about what to do if I died, what to do with my girls, how to help my husband, funerals, college funds, my dogs, just EVERYTHING that came to my mind if I thought of myself dying and not being here. It's NOT morbid to do, it's a much needed conversation for those of us facing a possible death. Also, my doctor put me on anti anxiety medication and I can't speak enough on how much it's helped me. That along with an anti depressant has truly put me in a better mindset. I've taken on tasks I always wanted to finish but always put off, like getting all of my MILLIONS of pictures organized and into albums. I've been having a blast tracing my families ancestory, and doing other things that are fun but, in the back of my mind, I'm doing them so it will be DONE if something should happen to me. I laugh alot more, let my house get messier, etc. I couldn't do all of that until I took the medication, please get him some medication, it will help. Then allow him to talk freely. If that's to much for him, get him a journal so he can get the feelings out.
I will add him to our prayer list.
Love,
Minnie

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