So afraid.
Comments
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continue to stay homeMaryRC said:wont stop
I wont stop posting, this is what got me through my ENT appt last week. I have always been a whiner when I dont feel good. My husband says he is use to it and when I am laying down quiet is when he worries. I was upset when my doctor said it wouldnt be until March 29th for my surgery. I was ready to go in and get it done!
Now one part of me is saying I should take this time until surgery to stay home and get rest ( I never take time off in 15 yrs) or go back to work till then. I am already on SDI and so unless I cancel it, I cant work. Then if I cancel then have to reapply. My work is heavy with my boy patient,lots of lifting and I get hurt ( kicked, and head butted).
I think I have excepted the fact that I have cancer. I just want it to be gone. I am ready for all to come. But I will whine :)My husband took care of me after my shoulder surgery, and boy was I ill from the anesthtic! Shoulder never did hurt. My husband told me to stay as long as I can this time in the hospital.
Thankyou all for being so kind to me. I wish none of this has happened to any of us, but it has and I have to be strong like all of you .
Steve and Mick, I hope your treatments are going well for you. I think about you all.
Mary ( the whiner in Northern California
Mary, something could happen where your doc moves the surgery up, so I would stay off work. After 15 yrs w/o missing a day, you deserve it!!!
Take care and God Bless,
Debbie0 -
staying positiveMaryRC said:26 days until surgery
I am hanging in there. I am trying to stay positive. 26 days until my neck disection. I am doing pretty good most of the time, but every now and then get some anxiety. Everybody tells me I can beat this. I have to stay positive.
Mary
praying for you daily. you can beat this. stay strong and know that you have people here that will keep supporting you every step of the way. attitude is everything.0 -
Stay PositiveMaryRC said:26 days until surgery
I am hanging in there. I am trying to stay positive. 26 days until my neck disection. I am doing pretty good most of the time, but every now and then get some anxiety. Everybody tells me I can beat this. I have to stay positive.
Mary
Stay positive and surround yourself with positive people. Don't listen to people that are negative or want to tell you stories that don't end positive.
When I was going through treatment and even now. If someone starts telling me a story about another with an illness I politely interject "That if it doesn't end positive, that I'd rather not hear it right now".
I try not to be rude, and I am aware that others get sick, I just don't want that in my mind, I only want positive thoughts in there.
Surround yourself with Faith, Family and Friends that support you.
One thing that my wife and I did, and I still update occasionally is an "Update" email list of friends, family and colleagues. Either my wife or I would keep everyone informed of my progress. When needed, I ask for an extra pray (and still do). You'd be amazed how uplifting it is to have so many people communicating with you....
Good Bless, and hang in there.
John0 -
Feeling sorry......MaryRC said:Thanks
I have had so much help since I joined this group. You have all been wonderful. I know I can do this. Sometimes I feel overwhelmed, like today. Ok.... I had a few hours of "feeling sorry for Mary day" Cried a bit, but I am over it. I need to stay away from web surfing.. I need info I need to come on here where it is positive.
Was reading some messages on Facebook and some friends told me they would come over and kick my butt if I didnt get over the feeling sorry for me day... so I got over it.
Thanks again to everyone!
Mary in Northern California.
Mary, it's okay to feel sorry for yourself occasionally!! I am 5 months post treatment and I still have a "pity party" for myself occasionally but I only allow them to be 15 minute parties. Somedays the wondering and worrying get to be too much for me and I will start to get down - a "mini pity party" and I get over it. As someone else on this site said "we have to put our big girl panties on" and fight the fight.
I have SCC of the larynx and NSCLC in my left lung and both are inoperable but treatable. I read about everyone else having surgery and I tend to get a little jealous :-) I just feel that if they could operate I would be okay and wouldn't keep hearing the doctors say "inoperable and incurable". Oh well, it's the hand I've been dealt and I will have to find a way to play that hand and hope I come out the winner.
I am happy to hear that you are staying out on SDI, you need this time to get yourself ready. If possible you may even want to try to gain a little weight before the treatment and surgery cause you to start losing. Enjoy the taste of food while you can :-) as most of us lost our taste buds (temporarily) and there is nothing worse than eating food that you can't taste and enjoy.
Take care of yourself and stay strong. Keep posting as we are all here to help you through this horrible ordeal. If you would like I will invite you to my next pity party - LOL
Stay strong and keep smiling,
Glenna0 -
Good adviceSkiffin16 said:Stay Positive
Stay positive and surround yourself with positive people. Don't listen to people that are negative or want to tell you stories that don't end positive.
When I was going through treatment and even now. If someone starts telling me a story about another with an illness I politely interject "That if it doesn't end positive, that I'd rather not hear it right now".
I try not to be rude, and I am aware that others get sick, I just don't want that in my mind, I only want positive thoughts in there.
Surround yourself with Faith, Family and Friends that support you.
One thing that my wife and I did, and I still update occasionally is an "Update" email list of friends, family and colleagues. Either my wife or I would keep everyone informed of my progress. When needed, I ask for an extra pray (and still do). You'd be amazed how uplifting it is to have so many people communicating with you....
Good Bless, and hang in there.
John
I second John's sentiments- for all to know as the best advice. Everything in John's post rings true. There is nothing to be gained by the negatives. We all experience them, but the fact of positive end results make the bad experiences nothing more than cause for a greater appreciation of the successful end result. WE ARE ALL WINNERS/SURVIVORS. And, to think in terms of negativity, is to think in terms of weakness, and something else. This ain't no place for that. Lord knows what we all go thru, mentally. But that's a given. In this family of our's, here, we do acknowledge such as fact, but we can only do so as seeing that weak negativity as something insignificant out there in the shadows that can work against us, and thus has no good place in our present, just as it had no place in our treatment past. The negative is something that only matters if we let it/want it to be. We Vets are proof that all can win the battle, and know just how much of a battle it can be; but, just as we are proof that all the battles can be won, we are proof that a negative, or weak, mindset, has no positive place in battle with the C. Oh yes, in treatment one must be real with the Med team, and let them know where the struggle is taking one, but that is not weakness- that is being real, and fighting your fight as best you can. Know, and Believe you can win the battle, as you can and will, and then you realize there is no actual reason for negative thoughts.
Anxiety, yes, of course, but that only concerns the unknown of tomorrow. We all experience it, and that's only natural. Those of us, Mary, who've fought the fight, will all tell you that Anxiety was good for us in preparation, but sorely lacking as a foe in the ring of battle, at least by the end of the fight. As the saying goes, nothing worthwhile comes easy, and it goes without saying that is the path we all have tred. Still, Mary, the worthwhile you will come to know as fact, truly, makes that path a good one to have tred upon. Every one of us, bottom-line fact, are testimony to that.
And as for Faith, Family and Friends, any or all- does ring true, John. And thank you, from all of us w/NPC, for your post, my friend.
Believe.
kcass0 -
24 days to go
24 days until my neck disection. I am doing pretty good most of the time. I have bought some cancer survivor books from Amazon. I read the posts on here. I must stay away though from web searching about this cancer. I do this.... and then it gives me a knot in my stomach, and then I start feeling anxious again. My husband told me he was going to take away my laptop if I did it again. He asked what I was doing now and I said I am where I am suppose to be... with people that give me positive feedback. I read all the posts,and I think about all of you.
I am ready for the surgery and the treatments to come. I can do it. I can beat this. I can!!!
Mary0 -
There you go!MaryRC said:24 days to go
24 days until my neck disection. I am doing pretty good most of the time. I have bought some cancer survivor books from Amazon. I read the posts on here. I must stay away though from web searching about this cancer. I do this.... and then it gives me a knot in my stomach, and then I start feeling anxious again. My husband told me he was going to take away my laptop if I did it again. He asked what I was doing now and I said I am where I am suppose to be... with people that give me positive feedback. I read all the posts,and I think about all of you.
I am ready for the surgery and the treatments to come. I can do it. I can beat this. I can!!!
Mary
Keep a positive attitude, Mary. I'm convinced that it helped me make it through treatment.
When I was diagnosed, I told my dear cousin, who had just survived a serious battle with breast cancer, that I had cancer too. She told me how she'd been told that her chances were very bad, but as she was lying in her hospital bed and coming out of the anesthesia, a thought kept running through her mind. It is a quote from Julian of Norwich, a Christian mystic who lived back in the 1300s: "All shall be well, and all shall be well, and all manner of things shall be well."
When I was going through the darkest depths of treatment, a package arrived in the mail. It was a little glass candle holder, with a pewter ring around the hole where the candle goes. On the ring is engraved, "All shall be well, and all shall be well, and all manner of things shall be well." That gave an enormous lift to my spirits at a time when I desperately needed it, and I will treasure it -- and my dear cousin -- until the day I die.
Now I have that candle holder on the vanity in our bedroom, and I see it every morning and take that saying to heart. It helps me get through the day.
All shall be well, Mary. Keep the faith.
--Jim in Delaware0 -
jimdelnative said:There you go!
Keep a positive attitude, Mary. I'm convinced that it helped me make it through treatment.
When I was diagnosed, I told my dear cousin, who had just survived a serious battle with breast cancer, that I had cancer too. She told me how she'd been told that her chances were very bad, but as she was lying in her hospital bed and coming out of the anesthesia, a thought kept running through her mind. It is a quote from Julian of Norwich, a Christian mystic who lived back in the 1300s: "All shall be well, and all shall be well, and all manner of things shall be well."
When I was going through the darkest depths of treatment, a package arrived in the mail. It was a little glass candle holder, with a pewter ring around the hole where the candle goes. On the ring is engraved, "All shall be well, and all shall be well, and all manner of things shall be well." That gave an enormous lift to my spirits at a time when I desperately needed it, and I will treasure it -- and my dear cousin -- until the day I die.
Now I have that candle holder on the vanity in our bedroom, and I see it every morning and take that saying to heart. It helps me get through the day.
All shall be well, Mary. Keep the faith.
--Jim in Delaware
i really loved your story and thought it very touching and moving. thanks for sharing.0 -
20 days to go
20 days until my neck disection. I have read all I need to know and I am ready to get it over with.
I read all the posts on here. Learning all I can.
I am not sure how long I will be in the hospital, I think the doctor said 2 days or so. See how I feel. Will have plenty of help at home. Hard for me to be the patient since I have been a nurse for so long.
Thanks for all the support I have had.
mary0 -
TexasMaryRC said:20 days to go
20 days until my neck disection. I have read all I need to know and I am ready to get it over with.
I read all the posts on here. Learning all I can.
I am not sure how long I will be in the hospital, I think the doctor said 2 days or so. See how I feel. Will have plenty of help at home. Hard for me to be the patient since I have been a nurse for so long.
Thanks for all the support I have had.
mary
AS we say in Texas mam, twern't nuttin. Just had a hankerin to help yall out.
Now that was painful huh.
Praying for you,
Steve0 -
Neck dissectionMaryRC said:20 days to go
20 days until my neck disection. I have read all I need to know and I am ready to get it over with.
I read all the posts on here. Learning all I can.
I am not sure how long I will be in the hospital, I think the doctor said 2 days or so. See how I feel. Will have plenty of help at home. Hard for me to be the patient since I have been a nurse for so long.
Thanks for all the support I have had.
mary
Dear Mary -I am in awe of the skills of nurses and so I want to tell you that you are ahead of the game and wish you godspeed. I am the world's worst patient at age 62, being treated by radiation tomorrow after surgery for salivary gland cancer (mucoepidermoid) which also required a dissection around the throat to get to the lymph nodes. I was on the operating table for more than 10 hours, but that included everything so far. This dissection was around the back of my right ear down to the front of my throat (at the bottom) and across. I have to say that the dissection and repair was probably the least of the pain. I have been using Hydrocodone rather than stronger narcotics and that has been a blessing, although I have mostly weaned away from that after four weeks.
I want to say that as the world's worst patient, that if I can get this far at least, so can you. I know it can seem overwhelming, and there are times when I just want to hide away, but hug your friends and family and try to take courage.
Mike0 -
So Afraid
MaryRC: You are not alone. When diagnosed with this terrible form of cancer I know all of us on this site were probably terrified. I remember crying like a baby the day I left the ENT's office alone. With my faith in God and a tremendous support system I decided I was going to put up the fight for my life and beat this thing. Unfortunately the treatment for this cancer has many devastating and many never ending side effects. I have a number of these. I was like you a perfectly healthly individual that thought I was doing all the right things in regard to my health. Cancer however does not discriminate, it is a equal opportunity sickness. You will need the great support system, tremendous faith and good doctors to help you battle this. Its not easy, but what is the alternative? This site has great information, use it as often as you can. God Bless0 -
feelgood storysportsman said:So Afraid
MaryRC: You are not alone. When diagnosed with this terrible form of cancer I know all of us on this site were probably terrified. I remember crying like a baby the day I left the ENT's office alone. With my faith in God and a tremendous support system I decided I was going to put up the fight for my life and beat this thing. Unfortunately the treatment for this cancer has many devastating and many never ending side effects. I have a number of these. I was like you a perfectly healthly individual that thought I was doing all the right things in regard to my health. Cancer however does not discriminate, it is a equal opportunity sickness. You will need the great support system, tremendous faith and good doctors to help you battle this. Its not easy, but what is the alternative? This site has great information, use it as often as you can. God Bless
Mary and anyone else,
I wanted to tell you about my boyfriends visit to the regular dentist. His dental oncologist required he go for a teeth cleaning because of the chlorhexidine he was using for the thrush. It was the only thing that works for his thrush. So his teeth began to stain and his tongue discolored also. He lives in a small town, maybe 6200 people so there arent many drs of each type there. This is the dentist that he went to see for some jaw pain, thinking some molar or wisdom tooth was trying to pry its way out, or something simple. The dentist didnt like what he saw right away, recommended he go immediately to an oral surgeon for a biopsy. Last Aug was the last time that the dentist saw my boyfriend.
Flash forward to March, he goes in for the cleaning. The dentist was so happy to see him, even though 60 lbs lighter and not quite up to par, still so very happy to see him standing there!! He examined his mouth and was overjoyed at his miraculous recovery so far. My guy doesnt always feel so miraculous about his recovery, since he cant even eat solids yet at 19 weeks post treatment. But to see it from his dentist's eyes, he is a walking miracle and so happy that he was the start of stopping something evil, and it worked. No more tumor. He told my boyfriend that he made his day and then some. I cant imagine for a dr who is in it for the science and to help people, what a pure feeling of "this is why I do what I do" that he must have had. Had my boyfriend just ignored his jaw pain, and the dentist not as keen to see what he thought was there, well, things could be very different right now.
I was so happy for the dentist and his feeling of professional accomplishment, as well as just helping to save a life.0 -
8 more days
Eight more days until my neck disection. I am prepared for it. I had my teeth cleaned Thurs and my hygientists sister works at Memorial in the operating room. She is going to look in on me and be sure I am doing good. My hygenist and my dentist are all going to be helping me. Feels good to have so many people there to help me with various things.
I dont know if anybody has had this problem. My husband, thou he is wonderful, he still thinks all I have is a tiny lump on the back of my neck. That my surgery will be nothing, just a couple stitches. I have tried to prepare him for what is going to be done, since he will be there to see me when I get out of surgery. Plus I have tried to tell him about chemo and radiation. I guess that is his way of coping with this. He is taking time off from work to be my "nurse" when I come home.
Mary0 -
just a couple of stitches?MaryRC said:8 more days
Eight more days until my neck disection. I am prepared for it. I had my teeth cleaned Thurs and my hygientists sister works at Memorial in the operating room. She is going to look in on me and be sure I am doing good. My hygenist and my dentist are all going to be helping me. Feels good to have so many people there to help me with various things.
I dont know if anybody has had this problem. My husband, thou he is wonderful, he still thinks all I have is a tiny lump on the back of my neck. That my surgery will be nothing, just a couple stitches. I have tried to prepare him for what is going to be done, since he will be there to see me when I get out of surgery. Plus I have tried to tell him about chemo and radiation. I guess that is his way of coping with this. He is taking time off from work to be my "nurse" when I come home.
Mary
show him a picture of a neck dissection. if you cannot find one, mine is on my expressions page. glad he is taking time off work to help you. he loves you and probably is just scared.0 -
Yes,I think he is afraid sosweetblood22 said:just a couple of stitches?
show him a picture of a neck dissection. if you cannot find one, mine is on my expressions page. glad he is taking time off work to help you. he loves you and probably is just scared.
Yes,I think he is afraid so tries to make it like it will be somethings simple. He will make a good "nurse" to me. He is already thinking of soft foods and smoothies he can make for me. When I had our son ( I have one child with him,4 from my 1st husband) he was there through the whole labor and delivery with me. So I know he will be ok, I just want him to be prepared for how I will look when I come out of the recovery room.
Mary0 -
It would be good to show him that picturesweetblood22 said:just a couple of stitches?
show him a picture of a neck dissection. if you cannot find one, mine is on my expressions page. glad he is taking time off work to help you. he loves you and probably is just scared.
I am glad that you posted it. It is very helpful.
Stacey0 -
Wow, Sweetblood!staceya said:It would be good to show him that picture
I am glad that you posted it. It is very helpful.
Stacey
I just looked at your photo of the modified radical neck dissection. I had one, too, but my incision just went straight down from beneath my right ear and down the side of my neck. Yours is, to say the least, impressive.
I hope you've healed well, with a minimum of scarring. My doc did a really good job, and unless you look closely, my neck looks kind of normal. Sort of.
--Jim in Delaware0
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