New here too. How does one deal with everything? Venting again.
Comments
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Girlfriends...
I don't have a close girlfriend either...I miss that...I do like the short passing chit-chats I have with the girls at the Longs Store around the corner. Thats my little getaway...where I just go to browse through the magazines, grab a soda, e.t.c. But I never did mention the to them the reason for my frequent visits. There is one that thought it was so funny how she would catch me just sitting looking at mags so often.
I became very comfortable with her so one day I mentioned that my husband has cancer, "I come here for little breaks in my day of caring for him". I knew immediately I should not have shared. It made her so nervous, she could hardly work the register. I understood and quite frankly felt bad for making her feel uncomfortable. I could have kicked myself, I didn't go back for a few days.
I ventured that way again and was surprised when I felt a tap on my shoulder while browsing. "Hi Trish, how are you today?...we are changing the store around a bit so if you need help finding anything let me know...I think we've got some new mags in!"
Such a silly thing to write about, I guess,...but it meant alot to me.
Sorry I don't know anything about the trach tube...wish I could help...but I'm sure someone will soon.
Take Care, Trish0 -
Sorry I got off Track...trish07 said:Girlfriends...
I don't have a close girlfriend either...I miss that...I do like the short passing chit-chats I have with the girls at the Longs Store around the corner. Thats my little getaway...where I just go to browse through the magazines, grab a soda, e.t.c. But I never did mention the to them the reason for my frequent visits. There is one that thought it was so funny how she would catch me just sitting looking at mags so often.
I became very comfortable with her so one day I mentioned that my husband has cancer, "I come here for little breaks in my day of caring for him". I knew immediately I should not have shared. It made her so nervous, she could hardly work the register. I understood and quite frankly felt bad for making her feel uncomfortable. I could have kicked myself, I didn't go back for a few days.
I ventured that way again and was surprised when I felt a tap on my shoulder while browsing. "Hi Trish, how are you today?...we are changing the store around a bit so if you need help finding anything let me know...I think we've got some new mags in!"
Such a silly thing to write about, I guess,...but it meant alot to me.
Sorry I don't know anything about the trach tube...wish I could help...but I'm sure someone will soon.
Take Care, Trish
Vent away!!! Let this site be your santuary...Your company left and just when you thought you might catch your breath...you are thrown another curve. I know what you mean, its like trying to kick your way out of a concrete box! So overwhelming how this disease invades our lives and seems so bent on destruction physically and mentally. I think its really good that you are keeping a journal, I think its brings clarity to write thoughts down, gives us insight to those deep down emotions that we don't share with others. it helps me if I concentrate on the task at hand and tell myself and my husband that we will not bombard ourselfs with what might come next. We have been dealt some heavy blows through this journey, my husband will ask, "What now Trish? with what I just went through how will I ever get through this?" ....." We will get through it just as we have all the other things we've confronted,we will face it head on, and when we are done we will take on what comes next...one day at a time,one task at a time,and we will get through that also.
Some days I'm O.K.,...some days I'm not. Some days I'm strong,...Some days I'm weak..
But maybe together all of us caretakers can get through it.
Take Care, Trish0 -
junklady
With such few choices of docs, it sounds like you live where I do! I also don't have anyone close to that I can talk to anymore. The few friends I had (selective I thought) have been scared away by the word "cancer". My only place I can go to for comfort these days is on the internet. My husband can't be left alone at anytime because he's too weak and an extremely demanding patient. I also don't have any experience with the trach tube but there are members here who certainly do. I'm sure they'll be responding soon. Please let us know how your doing ok?0 -
Im right there with you, I
Im right there with you, I have trish on this site she is really nice, if your husband is having problems breathing don;t mess around Jack was complaining about breathing and we just thought it was the spots in his lungs where the cancer had spread we rushed him to the hospital and it ended up his tumor in his neck was blocking his airway, He stay in the hospital a couple day to get him stable and then they did the trachea, Jack was scared up the realith is you breath or you don;t, It was a big adjustment, his trachea is 2 month in now, You will have to learn to clean it and take care of it, Jack's fell out a week after we got home the velcro collar came loose scared the crap out of us the first time I ended up calling 911 , they took him to the hospital and popped it back it, but now i know how to it if it happens, don;t panic if it comes out, you do have time to get to the hospital, and make sure when you change the his collar that you always to one side at a time and the opposite side you have him hold the trachea plate becasue you will not be able to hold it and change it, You will have to clean it twice a day , your insurance company will supply you with all the cleaning supply, and ask them for a humifer compressor, it is like oxygen but it provides mist to keep the trachea moist tht way he can cough the mucos up himself it is better for him to cough it up himself After the trachea is put in you will have to suction him 3 times a day, but that lessen after a while I might have to suction him every other day, And you make sure you are totally train on everything before you go home, Jack was in the hospital about 4 days after his trachea, and you tell them you want hands on training, you jump in and do all you can, It is alot but it does get easier, I bought Jack a wipe board for after his surgery because it is hard for him to talk, and they get frustrated, But the less you have to suction him and he cough up himself you have less chance of introducing infection, But just take it day by day, and just think about it this way the trachea is going to keep him alive, as for the steriods, we keep going back and forth , If Jack stays on them it is really bad for you organs and his moods go crazy and if he goes off of them his face swells, Right now we are weaning him off of them , becasue we are hoping the new chemo will shrink the tumor, I hope this helps, As the caretaker you will get use to the trachea, Jack is loosing his voice but we are all ok cuz he is still with us, Jack has a tracha, feeding tube, but all this stuff is necessary to save his live. Well Im here if you have any question,
My prayers are with you0 -
FriendsMichelleP said:junklady
With such few choices of docs, it sounds like you live where I do! I also don't have anyone close to that I can talk to anymore. The few friends I had (selective I thought) have been scared away by the word "cancer". My only place I can go to for comfort these days is on the internet. My husband can't be left alone at anytime because he's too weak and an extremely demanding patient. I also don't have any experience with the trach tube but there are members here who certainly do. I'm sure they'll be responding soon. Please let us know how your doing ok?
I understand where you and trish are coming from, it is true you seem to loose alot of your friends and even family member don;t know how to act Jack, They all say we are here for you but when you reach out they are busy, And I think that is why Jack rather just hang around at the house, I don;t know if it freak people out when the see Jack so sick but even his brother could not be around him to much, We have 2 really great friends who come over, ( jack's guitar player, ) But I also don't understand his friends or even his family out of town will call and they get upset because Jack does not get on the phone, ANd I have to explain to them that he is either not feeling good, and with the tumor it iw very hard for him to talk, and then they take it personally like Im keeping Jack away from them, So what I did is I made a Myspace page just for Jack ( called LIVING WITH CANCER ) and I tell all his friends and family that I keep it updated everyday , I post pictures and video of Jack so they can see what he is going through, and that way when they do see him they are not shocked to see how much he has changed, and plus it make it easier on me emotional to just post his updates there without having to call everyone, because I get too emotional especially if there is bad news, and some of the family member will tell me I don;t have time to go on line , I just don;t answer the phone. The web site is pretty cool I have daily blogs on how Jack is feeling, pictures , and it seems to be working most of the time, If you would like to go see it, I think you can go to myspace and type in his email adress which is jacktrv3@aol.com and request to be his friend, the page is very private family and friends only, But it is an outlet for me, Yea we babble on here sometimes just to let thing out,0 -
Thanks for the support.pattynonews said:Im right there with you, I
Im right there with you, I have trish on this site she is really nice, if your husband is having problems breathing don;t mess around Jack was complaining about breathing and we just thought it was the spots in his lungs where the cancer had spread we rushed him to the hospital and it ended up his tumor in his neck was blocking his airway, He stay in the hospital a couple day to get him stable and then they did the trachea, Jack was scared up the realith is you breath or you don;t, It was a big adjustment, his trachea is 2 month in now, You will have to learn to clean it and take care of it, Jack's fell out a week after we got home the velcro collar came loose scared the crap out of us the first time I ended up calling 911 , they took him to the hospital and popped it back it, but now i know how to it if it happens, don;t panic if it comes out, you do have time to get to the hospital, and make sure when you change the his collar that you always to one side at a time and the opposite side you have him hold the trachea plate becasue you will not be able to hold it and change it, You will have to clean it twice a day , your insurance company will supply you with all the cleaning supply, and ask them for a humifer compressor, it is like oxygen but it provides mist to keep the trachea moist tht way he can cough the mucos up himself it is better for him to cough it up himself After the trachea is put in you will have to suction him 3 times a day, but that lessen after a while I might have to suction him every other day, And you make sure you are totally train on everything before you go home, Jack was in the hospital about 4 days after his trachea, and you tell them you want hands on training, you jump in and do all you can, It is alot but it does get easier, I bought Jack a wipe board for after his surgery because it is hard for him to talk, and they get frustrated, But the less you have to suction him and he cough up himself you have less chance of introducing infection, But just take it day by day, and just think about it this way the trachea is going to keep him alive, as for the steriods, we keep going back and forth , If Jack stays on them it is really bad for you organs and his moods go crazy and if he goes off of them his face swells, Right now we are weaning him off of them , becasue we are hoping the new chemo will shrink the tumor, I hope this helps, As the caretaker you will get use to the trachea, Jack is loosing his voice but we are all ok cuz he is still with us, Jack has a tracha, feeding tube, but all this stuff is necessary to save his live. Well Im here if you have any question,
My prayers are with you
Thank you all for the support. It makes me feel a little stronger to know that we are all here for each other. Thanks for the info on the trach. I'm sure I will have many more questions. Yesterday was a very emotional day. I had to tell a few close friends of Dale's what is going on in our lives. I would rather they hear it from us than from some misinformed gossipy person. We live in a small town where everyone's personal lives are public knowledge. I hate it. I hope I can stay calm and strong today. That's my goal. God bless you all.0 -
Venting Regularly
I am also new here,but I can truthfully say, that taking care of someone you love who is very sick is really hard. So many unanswered feelings and emotional ups and downs everyday.
My opinion is writing here and reading post helps a little, but we all know there is way more to it than that. We all need to find and sign up for "Dealing with your emotions 101"
if such a course exist, I do anyway. It's my understanding that a trach tube is usually necessary when someones throat is swollen and the airway is becoming too blocked for them to breath properly. It allows the person to get air to the lungs easier. Not positive though. As far as the venting goes, it is healthy to cry a little, get mad, fill a pillow case with sand, hang it in the tree out back, pretend it is the cancer and or the doctor, punch away until the anger slips away, then breath in deep through your nose and exhale deep out of the mouth, tell yourself I feel better, I feel better. How I deal with my fear is, I clean house, I cook something special, I find something interesting and start reading. Sometimes though, feelings are just about uncontrollable, and it's those times when you just have to lean on a friend and hope they understand you have nowhere else to turn.
Hope this helps a little, even if it's just for the time you spent reading it.
Faith and Hope are our best allies in this struggle!
Thanks for your topic, maybe others will share their ideas of how hey cope with all the unwanted anger and variety of emotional stresses that we are all dealing with or soon probably going to deal with.
Thoughts and prayers for you and Dale. Love conquers most everthing life can throw at you.
Art0 -
Trach Tubes ARE Reversible
Trach Tubes ARE reversible. Think of all the people who get in accidents and are in the hospital with trach tubes...the leave the hospital without tubes.
Ask the doctor about this. If they are treating your husband and at least have expectation of improvement of his condition then it is also possible that this procedure could be reversed.
If so, it may be easier for hubby to think of it as a "temporary" thing.
Good Luck!
Fatima0 -
I'm freaking out.Artin2010 said:Venting Regularly
I am also new here,but I can truthfully say, that taking care of someone you love who is very sick is really hard. So many unanswered feelings and emotional ups and downs everyday.
My opinion is writing here and reading post helps a little, but we all know there is way more to it than that. We all need to find and sign up for "Dealing with your emotions 101"
if such a course exist, I do anyway. It's my understanding that a trach tube is usually necessary when someones throat is swollen and the airway is becoming too blocked for them to breath properly. It allows the person to get air to the lungs easier. Not positive though. As far as the venting goes, it is healthy to cry a little, get mad, fill a pillow case with sand, hang it in the tree out back, pretend it is the cancer and or the doctor, punch away until the anger slips away, then breath in deep through your nose and exhale deep out of the mouth, tell yourself I feel better, I feel better. How I deal with my fear is, I clean house, I cook something special, I find something interesting and start reading. Sometimes though, feelings are just about uncontrollable, and it's those times when you just have to lean on a friend and hope they understand you have nowhere else to turn.
Hope this helps a little, even if it's just for the time you spent reading it.
Faith and Hope are our best allies in this struggle!
Thanks for your topic, maybe others will share their ideas of how hey cope with all the unwanted anger and variety of emotional stresses that we are all dealing with or soon probably going to deal with.
Thoughts and prayers for you and Dale. Love conquers most everthing life can throw at you.
Art
Freaking out. This afternoon is surgery to put in the trach tube. Our lives will be changed forever.I will never hear Dale's voice the same way nor will our love life be the same. I know this will help him breathe better and give him more time here on earth, but this is hard to take. Stayed up late last night, drinking brandy and crying together. He is scared to death and so am I. Will try to stay strong for him. Will tell myself I can do this. Will keep you posted. Thanks for listening.0 -
today's surgeryjunklady said:I'm freaking out.
Freaking out. This afternoon is surgery to put in the trach tube. Our lives will be changed forever.I will never hear Dale's voice the same way nor will our love life be the same. I know this will help him breathe better and give him more time here on earth, but this is hard to take. Stayed up late last night, drinking brandy and crying together. He is scared to death and so am I. Will try to stay strong for him. Will tell myself I can do this. Will keep you posted. Thanks for listening.
I don't have any experience with a trach tube, but I wanted you to know how sorry I am that you two are having to deal with this awful disease. In reading your posts you seem like such a wonderful loving couple and also very "strong". Keep up the fight ok? Please keep us updated.0 -
Junk ladyjunklady said:I'm freaking out.
Freaking out. This afternoon is surgery to put in the trach tube. Our lives will be changed forever.I will never hear Dale's voice the same way nor will our love life be the same. I know this will help him breathe better and give him more time here on earth, but this is hard to take. Stayed up late last night, drinking brandy and crying together. He is scared to death and so am I. Will try to stay strong for him. Will tell myself I can do this. Will keep you posted. Thanks for listening.
I hope the surgery went well today. I know you and your husband were both understandably scared, but believe me, you will get through this. You'll find your strength in each other. I will say a prayer for you both.
Betty0 -
it's ok to freakjunklady said:I'm freaking out.
Freaking out. This afternoon is surgery to put in the trach tube. Our lives will be changed forever.I will never hear Dale's voice the same way nor will our love life be the same. I know this will help him breathe better and give him more time here on earth, but this is hard to take. Stayed up late last night, drinking brandy and crying together. He is scared to death and so am I. Will try to stay strong for him. Will tell myself I can do this. Will keep you posted. Thanks for listening.
Junklady,
While I have never had any experience with trach tubes,so many of the drugs the last few days of Sean's life robbed him of the ability to speek well and sometimes not at all as he could only move his mouth with fleeting sounds coming out. When he got the strength up one night,he asked why can't I talk right and here was my reply,"Well honey,you know how you say everyday it's something new? Well this is our something new,so you've got to be more patient and talk slower and I have to listen harder,and as with everything else,we will overcome this too." I also explained to him it was the morphine pump whic he had elected to have started that was interfering with his ability to speak,as the drugs can over ride his speech center,sucks some times being a psych major in college and knowing to much information.
You mention your love life will never be the same. In ways you are right. Sean and I lost the ability to have sexual relations back in May,which was really hard on both of us as we were as active as newlyweds on their honeymoon ever since we got together seven years ago. However,when one ability is not avaiable anylonger,others find a way of taking their place. For us it was holding hands all the time,staring into each others eyes all the time,and the simplest touching of one another at all times. Literally not figuratively,there was never more than a five to ten minute gap in our lives when we were not touching one anothers hands or face the last month and a half of his life. He slept very little,therefore,I slept very little,and even in the short periods that we did sleep,we were holding hands. You will find love always finds away it will just be your something new.0 -
Caregiver friends, update on DaleMichelleP said:today's surgery
I don't have any experience with a trach tube, but I wanted you to know how sorry I am that you two are having to deal with this awful disease. In reading your posts you seem like such a wonderful loving couple and also very "strong". Keep up the fight ok? Please keep us updated.
Thank you all for your support. This site is my haven for comfort. Dale had trach suregery Friday. All went well, piece of cake said the doc. Maybe for him doing the surgery, certainly not for Dale trying to recover. He was in ICU for a day, then to a regular room. Very frustrating not being able to talk along with all the mechanical noise, disturbances and pain. Finally got home Tuesday afternoon. I did get ample training with all the equipment and changing the inner cannula. Quite easy too learn acutally. The things I didn't like is the way some hospital staff talk to you, like a first grader. Gee, I have a masters degree, I'm not a moron. I think I have everything under control. I might even buy a nurse costume for Halloween. I try to encourage Dale that with time, things will improve. He wants so bad to get outside and feed the cattle, but we have help with that. He is one who hates depending on people for help. Thank you for your concerns and keep being strong all you caregivers. My heart and prayers go out to all of you. We are the best.0 -
This comment has been removed by the Moderatorjunklady said:Caregiver friends, update on Dale
Thank you all for your support. This site is my haven for comfort. Dale had trach suregery Friday. All went well, piece of cake said the doc. Maybe for him doing the surgery, certainly not for Dale trying to recover. He was in ICU for a day, then to a regular room. Very frustrating not being able to talk along with all the mechanical noise, disturbances and pain. Finally got home Tuesday afternoon. I did get ample training with all the equipment and changing the inner cannula. Quite easy too learn acutally. The things I didn't like is the way some hospital staff talk to you, like a first grader. Gee, I have a masters degree, I'm not a moron. I think I have everything under control. I might even buy a nurse costume for Halloween. I try to encourage Dale that with time, things will improve. He wants so bad to get outside and feed the cattle, but we have help with that. He is one who hates depending on people for help. Thank you for your concerns and keep being strong all you caregivers. My heart and prayers go out to all of you. We are the best.0
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