Losing my mind with fear

D Lewis

D Lewis said:

Climbing that really big hill...
Akotke,

We're all with you on this one, girl. When I started treatment, my sweet 18 year old daughter sent me this in an email. It's too good not to share again:

"Here’s another fun thing i just thought of.

Right now in our lives, mine and yours, it's kinda like backpacking. The load we're carrying is getting heavier and heavier, and the trail is getting steeper and more rocky and more complicated. At first glance this makes us all freak out and throw our hands up and say "o no f*** our lives!" but when you're backpacking it's pretty simple. You reach places like this, and it's make or break time. You have one shot to make it up this scary as hell place so you gotta do it right.

So what do you do?

You stop, assess the situation, take a deep breath, make sure your boots are tied and then you clench your teeth and let your body do what it has to do. You just take a step forward. One step, and when you make that step safely, you look and take another step. You face forward and you just go. One step at a time. You go and you don't stop because you just have to keep going. Do your muscles hurt? Like hell, but if you stop it will only get worse so you keep going.

This is what you have done, and what I have done, and hey, check it out, we're already half way up this once-was-a-scary-mother-f***in-hill. Why, you ask? Because life is a crazy trail full of sh** that sometimes sucks and is scary, but most of the time, it's nothing that can't be easily handled one small well planned step at a time. Even if you have a ton of sh** on your back. It just makes you pay more attention to where you step."
_______
OK, so it's a little profane, but it sure got my attention.

Deb

Someday
Oh, and someday your kids are going to be 18 years old, and you WILL be there for them, because you've gone through this treatment. You will look back at this time, from that far-away vantage point, and you will be so grateful. Just keep moving forward, one step at a time.

Deb

KristynRuth86

D Lewis said:

KristynRuth
Girl, I just LOVE your fighting spirit. You inspire ME! You always have.

Deb

D Lewis and Skiffin, Y'ALL inspired ME from the beggining and continue to!

Hondo

Hi akotke

You are not alone in this, there are many of us here who have been there and can and will help you to in getting through this. Yes you are right it is going to get worse before it gets any better, but you will make it just keep positive. If you are a believer keep praying and find strength in God. Whatever you do don’t give up there are too many people in your life who need you. This is just another door in life that some of us have to go into, but when we come out we are a stronger person.

If it is OK with you I would like to put you on my pray list.

Please don’t be afraid to contact any of us if you need help, I am 6 years out of treatment but I stay here for one reason to help others like you make it to the finish line. Click on Hondo and it will bring you to my post and my e-mail address is there.

All the best to you and welcome to the Family here on CSN
Hondo

Hondo

robroaster said:

losing your mind
I am now 5 years post stage 4a, tonsil and lymph nodes. My 7.5 weeks of radiation and chemo, alon with the 2-3 weeks after, were very trying and I didn't know if, or how, I would make it but I did, and I am a much better person because of my experience. One piece of advice that one of my closest friends gave me when I told him how mentally tough this was for me(he is also a Radiologist)was "you are used to being in control of your life. At this moment you have to hand control over to your doctors and caregivers. When you finally resolve yourself to that, it will become easier for you to deal with it." My wife also surrounded me with friends and family to help out. I would be happy to talk to you if you would like. I live in NJ and was treated at Beth Israel in NY. I can be reached at 732-687-3518 and my name is Rob Jaffe.

Hi Rob
Almost missed you there just want to welcome you to the family here on CSN

All the best to you my friend
Hondo

connieprice1

You CAN do it!
Dear Akotke, Your post broke my heart and I hope I can offer some help. When you feel you can go no further just look in your children's eyes and you will get the strength you need to continue. The treatments are rough but for me the rewards are worth it. I also had a dry mouth early on with my radiation treatments and I wanted to recommend Caphosol for you. The Caphosol is expensive but it will take care of the dry mouth problem. I also took a valium before radiation treatments to help me relax. Sometimes I wondered if I was going to make it but somehow I finished my last treatment on March 17th, 2011. The radiation treatments made me very tired and I needed lots of rest. Hopefully someone will be helping you with your children so you can get the rest you will need during this time. I also am taking hydrocodone as needed and I wear a morphine patch to help keep me comfortable. Akotke, you have too much to LIVE for and don't ever consider giving up. Your husband and children need you and you can do this. My husband and I are praying for you. With Love, Connie

buzz99

akotke
I don't think I can add much to what has already been said. My hubby, Buzz, is two months post treatment and like you, we wondered if we could do it at times. You will get through this ordeal but don't hesitate to ask for help. You may need antidepressants and/or anti-anxiety meds. You will need pain medication also. Don't tough it out! We are here for you!

luv4lacrosse

GIVE YOURSELF TO YOUR CAREGIVER
I learned the hard way being a control freak. Once I turned over my situation to my wife, (caregiver) I was finally able to focus on the only job at hand, Getting through the treatment and doing everything I could to heal and recover the best that I could. It sounds like you have a spouse who you can turn things over to, and sounds like he will gladly accept the challenge. The next couple of months will be real tough, but after that things will slowly improve. Just remember this is a small part out of your entire life, and treat it as such.

You can and will do this and come out of the other side just like the rest of us.

Best!!

Mike

Kimba1505

luv4lacrosse said:

GIVE YOURSELF TO YOUR CAREGIVER
I learned the hard way being a control freak. Once I turned over my situation to my wife, (caregiver) I was finally able to focus on the only job at hand, Getting through the treatment and doing everything I could to heal and recover the best that I could. It sounds like you have a spouse who you can turn things over to, and sounds like he will gladly accept the challenge. The next couple of months will be real tough, but after that things will slowly improve. Just remember this is a small part out of your entire life, and treat it as such.

You can and will do this and come out of the other side just like the rest of us.

Best!!

Mike

Wiping the tears out of my eyes...
...from Deb's daughters letter so I can type to you Akotke. Powerful stuff here. It can give you strength if you let it. I am the caregiver of Mark, diagnosed and treated last year, now 7 months post teatment, and feeling groovey...for the most part.
I, as caregiver could not have done what I did to support him, if it had not been for the people here. And what I have heard these folks say above is "let go". You may be trying to do too much; continue to be mother, wife, homemaker...let it go. One thing that was crystal clear during Mark's treatment was it was ALL about Mark. I had to put my needs aside and take as much off his plate as I possibly could. This was how it just was. His only job was to allow his body to go through the onslaught of surgery, chemicals and radiation that would tear him down, but save his life. I could not be in that battle with him, it was really his to fight alone, but I had his back. Fear is normal, and with fear comes a response to flee or fight. You sound immobilized by fear right now, but you will choose to fight. A mother does. She doesn't do it for herself. She does it for her kids. You will put one foot in front of the other, and you will mark the progress that you made. Your only task at hand is to fight this dreaded disease. Others will take care of the daily duties. This has a beginning, a middle, and an end. It ends. Fight. You are not alone.
Kim

Pam M

Sending Strength
I would say that most, if not all of us here have had our moments when we wished we could have been more brave or stronger. I remember one day, on the phone with my doctor's answering service - I was already in pain and afraid, and the frustration of trying to get the man to understand my words (mouth sores - couldn't speak clearly) brought me to tears. I couldn't believe that tears actually came out of my eyes just because speaking made it hurt more, but I had to keep repeating myself to give my info. I was horrified that I cried, and mortified that there was a witness (and thought twice about deleting this little story twice, so folks here wouldn't know). Maybe it was weak of me, but, looking back, I'm kinder to myself in how I view that episode, and no longer think as badly of myself for being weak.

I wish I could tell you how to stop dwelling on things - I tried to distract myself when I felt very negative feelings coming on. I would chat about nothing, watch silly tv shows and play video or online games. When I felt very down or weak, I isolated myself (I'm thinking that's not the best thing to do, but it's what I did). Now, I would also recommend visual imaging or relaxation exercises. Take care - do well.

Pam M

D Lewis said:

Climbing that really big hill...
Akotke,

We're all with you on this one, girl. When I started treatment, my sweet 18 year old daughter sent me this in an email. It's too good not to share again:

"Here’s another fun thing i just thought of.

Right now in our lives, mine and yours, it's kinda like backpacking. The load we're carrying is getting heavier and heavier, and the trail is getting steeper and more rocky and more complicated. At first glance this makes us all freak out and throw our hands up and say "o no f*** our lives!" but when you're backpacking it's pretty simple. You reach places like this, and it's make or break time. You have one shot to make it up this scary as hell place so you gotta do it right.

So what do you do?

You stop, assess the situation, take a deep breath, make sure your boots are tied and then you clench your teeth and let your body do what it has to do. You just take a step forward. One step, and when you make that step safely, you look and take another step. You face forward and you just go. One step at a time. You go and you don't stop because you just have to keep going. Do your muscles hurt? Like hell, but if you stop it will only get worse so you keep going.

This is what you have done, and what I have done, and hey, check it out, we're already half way up this once-was-a-scary-mother-f***in-hill. Why, you ask? Because life is a crazy trail full of sh** that sometimes sucks and is scary, but most of the time, it's nothing that can't be easily handled one small well planned step at a time. Even if you have a ton of sh** on your back. It just makes you pay more attention to where you step."
_______
OK, so it's a little profane, but it sure got my attention.

Deb

Wow
Who raised that kid to come out that smart? Proud Mommy moment, when you got that email, huh?

ekdennie

fear
akotke,

I know your fears, I know your pain. My youngest was 4 months old when I was told I had cancer, my other two children were 4 and 2 years old. I had mucoepidermoid carcinoma of the hard palate. I was breastfeeding and enjoying having three young children and I was looking forward to seeing how they would all interact as they got older. then with the diagnosis of cancer I had to think about what would they remember about me, if the worst would happen.
after my surgery, my voice was so different, I had a huge hole and I sounded almost like a deaf person sounds when they try to speak. I sang to my children all the time, but post surgery I couldn't do it. it made me so sad and scared of the future...I don't have the best voice, but I loved to sing to them, it calmed their fears, it comforted them when they were hurt and it made me happy. I eventually got a mouthpiece where I can sing to them, but my voice is forever altered. My youngest will never know what my natural voice sounded like, but he is getting something far more precious...he has me.
I then went through the toughest few months of my life when I had 30 radiation treatments. My oldest was 4 years old and was starting pre-k. i couldn't drive, but I sat in the front seat while my husband drove him to the first day of school. (this was around the time of my surgery). then when radiation began, I forced myself to get out of bed every morning to at least give my son a hug and kiss and wish him a great day at school. I packed his lunches and included a little note to let him know that mommy loved him. (I later found that he had kept them in a secret pocket of his lunch box to look at when he needed his mommy). I would be awake when he came back home to give him another hug and kiss even if it meant I would have to sleep for many hours afterwards.

There are things you can do when your cancer has got you down. I don't know your prognosis but don't just think about what might happen, think about what is happening. the pain you feel is your body healing after the radiation is killing off the cancer cells. you are fighting a very tough battle...it is okay to feel weak, it is okay to cry, just remember you are strong. as a mother you know you are strong. if your child was hurt you would fight to protect them...now you must fight to make memories for your children, you must fight to show them just what it means to be brave. your children are watching you and learning from you. You are not a wimp. a wimp is someone who doesn't have the courage to say I am scared of what the future holds. to make yourself feel better, you could write letters to your son and daughter about all the things you wish them to know...seal them in envelopes and put those in a box. I did this for each of my children. it gave me a sense of peace that if things didn't go as I hoped that at least they would have a piece of me. it helped give me the courage and strength I needed to continue to fight. If you are in pain...tell your doctor...they can give you medication that will help. I took plenty of pain meeds, and I was able to continue to breastfeed my baby...I just called the pediatrician before I began taking any new medication to double check the side effects or if there was a different medication that they would recommend. some I just didn't take, the risks were too great, but others I took.

Right now you need to focus on healing and getting through all this. none of us knows what the future holds, but you do have control over today. make today special for your son and your daughter. you need to eat even when it tastes bad, give yourself children food if you must...I lived on mac and cheese and macaroni with homemade alfredo sauce (minus the pepper). that with a big glass of milk to help it go down and a glass of water to wash away the milk are what helped me though. I didn't eat with my family for 8 weeks or so, I didn't want them to see me in such pain.

you asked where does that strength come from? for me, it came from the glint in my son's eyes when I knew he was up to something, the giggle my daughter couldn't contain when I tickle her, and the huge baby smile from my youngest son when he would see me. my strength came from my mother and my husband who worked so hard to help my children still have a normal life even when mommy couldn't participate in everything. my strength came from my tears as I learned to grieve what would never be again and learned to embrace what was still here. Radiation is pain, that is true, it is a lot of pain....but it is pain with an end. it won't last forever. the side effects are dramatic, but they can and will improve. they may not be the same as before, but you get to rediscover food and how it tastes and how it feels much like your baby girl. You will get to watch her walk and celebrate her first birthday...you just have to believe. sometimes that is the hardest thing to do...to just believe that you will see it, that you will be there. make plans for just in case, but just believe. that tiny sliver of hope can grow and grow.

right now, you are in the midst of the battle. you will be fighting every day to win the war. each breath you take, each moment you share with your family is one more battle that YOU have WON! Now this will sound harsh and I mean it to be a kick in the rear, but a supportive one. if you don't want your son to see you cry and beg to give up...then just don't do it in front of him, no matter how much your pain is. excuse yourself from the room he is in, or ask him to give you a mommy minute. then cry your eyes out. when you are done, go give him a hug...no one likes to see their mom in pain, so explain that you are in pain because you and the radiation are fighting the cancer. I don't know how old he is, but you can ask him if he would like to draw you a picture of the two of you fighting the cancer as a team. if he is older, ask him how he is feeling about seeing you in pain, then tell him something he can do to help you feel better. this will not last forever. you may be at the beginning of your radiation battles, but this is the perfect time to determine how you want your son to remember these moments...do you want him to remember you crying or do you what him to remember your strength...don't think of it as how he will remember you if you don't make it, but how he will remember you if you do.

wishing you all the best, medication to help with the side effects, and tons of hugs...we all need a hug sometimes...so HUGS!
elizabeth

p.s. I still have dry mouth, but my youngest son is now 13 months old and I have gotten back most of my taste buds...things are different than they were before, food and life wise, but I am here to enjoy tasting food again and learning how to live with my new normal. good luck finding your new normal...it is quite a journey...I know you are up for it though!

D Lewis

ekdennie said:

fear
akotke,

I know your fears, I know your pain. My youngest was 4 months old when I was told I had cancer, my other two children were 4 and 2 years old. I had mucoepidermoid carcinoma of the hard palate. I was breastfeeding and enjoying having three young children and I was looking forward to seeing how they would all interact as they got older. then with the diagnosis of cancer I had to think about what would they remember about me, if the worst would happen.
after my surgery, my voice was so different, I had a huge hole and I sounded almost like a deaf person sounds when they try to speak. I sang to my children all the time, but post surgery I couldn't do it. it made me so sad and scared of the future...I don't have the best voice, but I loved to sing to them, it calmed their fears, it comforted them when they were hurt and it made me happy. I eventually got a mouthpiece where I can sing to them, but my voice is forever altered. My youngest will never know what my natural voice sounded like, but he is getting something far more precious...he has me.
I then went through the toughest few months of my life when I had 30 radiation treatments. My oldest was 4 years old and was starting pre-k. i couldn't drive, but I sat in the front seat while my husband drove him to the first day of school. (this was around the time of my surgery). then when radiation began, I forced myself to get out of bed every morning to at least give my son a hug and kiss and wish him a great day at school. I packed his lunches and included a little note to let him know that mommy loved him. (I later found that he had kept them in a secret pocket of his lunch box to look at when he needed his mommy). I would be awake when he came back home to give him another hug and kiss even if it meant I would have to sleep for many hours afterwards.

There are things you can do when your cancer has got you down. I don't know your prognosis but don't just think about what might happen, think about what is happening. the pain you feel is your body healing after the radiation is killing off the cancer cells. you are fighting a very tough battle...it is okay to feel weak, it is okay to cry, just remember you are strong. as a mother you know you are strong. if your child was hurt you would fight to protect them...now you must fight to make memories for your children, you must fight to show them just what it means to be brave. your children are watching you and learning from you. You are not a wimp. a wimp is someone who doesn't have the courage to say I am scared of what the future holds. to make yourself feel better, you could write letters to your son and daughter about all the things you wish them to know...seal them in envelopes and put those in a box. I did this for each of my children. it gave me a sense of peace that if things didn't go as I hoped that at least they would have a piece of me. it helped give me the courage and strength I needed to continue to fight. If you are in pain...tell your doctor...they can give you medication that will help. I took plenty of pain meeds, and I was able to continue to breastfeed my baby...I just called the pediatrician before I began taking any new medication to double check the side effects or if there was a different medication that they would recommend. some I just didn't take, the risks were too great, but others I took.

Right now you need to focus on healing and getting through all this. none of us knows what the future holds, but you do have control over today. make today special for your son and your daughter. you need to eat even when it tastes bad, give yourself children food if you must...I lived on mac and cheese and macaroni with homemade alfredo sauce (minus the pepper). that with a big glass of milk to help it go down and a glass of water to wash away the milk are what helped me though. I didn't eat with my family for 8 weeks or so, I didn't want them to see me in such pain.

you asked where does that strength come from? for me, it came from the glint in my son's eyes when I knew he was up to something, the giggle my daughter couldn't contain when I tickle her, and the huge baby smile from my youngest son when he would see me. my strength came from my mother and my husband who worked so hard to help my children still have a normal life even when mommy couldn't participate in everything. my strength came from my tears as I learned to grieve what would never be again and learned to embrace what was still here. Radiation is pain, that is true, it is a lot of pain....but it is pain with an end. it won't last forever. the side effects are dramatic, but they can and will improve. they may not be the same as before, but you get to rediscover food and how it tastes and how it feels much like your baby girl. You will get to watch her walk and celebrate her first birthday...you just have to believe. sometimes that is the hardest thing to do...to just believe that you will see it, that you will be there. make plans for just in case, but just believe. that tiny sliver of hope can grow and grow.

right now, you are in the midst of the battle. you will be fighting every day to win the war. each breath you take, each moment you share with your family is one more battle that YOU have WON! Now this will sound harsh and I mean it to be a kick in the rear, but a supportive one. if you don't want your son to see you cry and beg to give up...then just don't do it in front of him, no matter how much your pain is. excuse yourself from the room he is in, or ask him to give you a mommy minute. then cry your eyes out. when you are done, go give him a hug...no one likes to see their mom in pain, so explain that you are in pain because you and the radiation are fighting the cancer. I don't know how old he is, but you can ask him if he would like to draw you a picture of the two of you fighting the cancer as a team. if he is older, ask him how he is feeling about seeing you in pain, then tell him something he can do to help you feel better. this will not last forever. you may be at the beginning of your radiation battles, but this is the perfect time to determine how you want your son to remember these moments...do you want him to remember you crying or do you what him to remember your strength...don't think of it as how he will remember you if you don't make it, but how he will remember you if you do.

wishing you all the best, medication to help with the side effects, and tons of hugs...we all need a hug sometimes...so HUGS!
elizabeth

p.s. I still have dry mouth, but my youngest son is now 13 months old and I have gotten back most of my taste buds...things are different than they were before, food and life wise, but I am here to enjoy tasting food again and learning how to live with my new normal. good luck finding your new normal...it is quite a journey...I know you are up for it though!

Elizabeth
Ok, now I'm the one with tears in my eyes. Akotke I really hope you've found the strength to come back on here and read through all these responses. These are some of the most heartfelt communications I've ever read on this forum.

You are all wonderful, and I never could have made this journey without you all standing beside me and holding me in your hearts.

Deb

sweetblood22

D Lewis said:

Elizabeth
Ok, now I'm the one with tears in my eyes. Akotke I really hope you've found the strength to come back on here and read through all these responses. These are some of the most heartfelt communications I've ever read on this forum.

You are all wonderful, and I never could have made this journey without you all standing beside me and holding me in your hearts.

Deb

Elizabeth
Great post. Even tho I have no children, it still inspired and resonated with me deeply.

Glenna M

ekdennie said:

fear
akotke,

I know your fears, I know your pain. My youngest was 4 months old when I was told I had cancer, my other two children were 4 and 2 years old. I had mucoepidermoid carcinoma of the hard palate. I was breastfeeding and enjoying having three young children and I was looking forward to seeing how they would all interact as they got older. then with the diagnosis of cancer I had to think about what would they remember about me, if the worst would happen.
after my surgery, my voice was so different, I had a huge hole and I sounded almost like a deaf person sounds when they try to speak. I sang to my children all the time, but post surgery I couldn't do it. it made me so sad and scared of the future...I don't have the best voice, but I loved to sing to them, it calmed their fears, it comforted them when they were hurt and it made me happy. I eventually got a mouthpiece where I can sing to them, but my voice is forever altered. My youngest will never know what my natural voice sounded like, but he is getting something far more precious...he has me.
I then went through the toughest few months of my life when I had 30 radiation treatments. My oldest was 4 years old and was starting pre-k. i couldn't drive, but I sat in the front seat while my husband drove him to the first day of school. (this was around the time of my surgery). then when radiation began, I forced myself to get out of bed every morning to at least give my son a hug and kiss and wish him a great day at school. I packed his lunches and included a little note to let him know that mommy loved him. (I later found that he had kept them in a secret pocket of his lunch box to look at when he needed his mommy). I would be awake when he came back home to give him another hug and kiss even if it meant I would have to sleep for many hours afterwards.

There are things you can do when your cancer has got you down. I don't know your prognosis but don't just think about what might happen, think about what is happening. the pain you feel is your body healing after the radiation is killing off the cancer cells. you are fighting a very tough battle...it is okay to feel weak, it is okay to cry, just remember you are strong. as a mother you know you are strong. if your child was hurt you would fight to protect them...now you must fight to make memories for your children, you must fight to show them just what it means to be brave. your children are watching you and learning from you. You are not a wimp. a wimp is someone who doesn't have the courage to say I am scared of what the future holds. to make yourself feel better, you could write letters to your son and daughter about all the things you wish them to know...seal them in envelopes and put those in a box. I did this for each of my children. it gave me a sense of peace that if things didn't go as I hoped that at least they would have a piece of me. it helped give me the courage and strength I needed to continue to fight. If you are in pain...tell your doctor...they can give you medication that will help. I took plenty of pain meeds, and I was able to continue to breastfeed my baby...I just called the pediatrician before I began taking any new medication to double check the side effects or if there was a different medication that they would recommend. some I just didn't take, the risks were too great, but others I took.

Right now you need to focus on healing and getting through all this. none of us knows what the future holds, but you do have control over today. make today special for your son and your daughter. you need to eat even when it tastes bad, give yourself children food if you must...I lived on mac and cheese and macaroni with homemade alfredo sauce (minus the pepper). that with a big glass of milk to help it go down and a glass of water to wash away the milk are what helped me though. I didn't eat with my family for 8 weeks or so, I didn't want them to see me in such pain.

you asked where does that strength come from? for me, it came from the glint in my son's eyes when I knew he was up to something, the giggle my daughter couldn't contain when I tickle her, and the huge baby smile from my youngest son when he would see me. my strength came from my mother and my husband who worked so hard to help my children still have a normal life even when mommy couldn't participate in everything. my strength came from my tears as I learned to grieve what would never be again and learned to embrace what was still here. Radiation is pain, that is true, it is a lot of pain....but it is pain with an end. it won't last forever. the side effects are dramatic, but they can and will improve. they may not be the same as before, but you get to rediscover food and how it tastes and how it feels much like your baby girl. You will get to watch her walk and celebrate her first birthday...you just have to believe. sometimes that is the hardest thing to do...to just believe that you will see it, that you will be there. make plans for just in case, but just believe. that tiny sliver of hope can grow and grow.

right now, you are in the midst of the battle. you will be fighting every day to win the war. each breath you take, each moment you share with your family is one more battle that YOU have WON! Now this will sound harsh and I mean it to be a kick in the rear, but a supportive one. if you don't want your son to see you cry and beg to give up...then just don't do it in front of him, no matter how much your pain is. excuse yourself from the room he is in, or ask him to give you a mommy minute. then cry your eyes out. when you are done, go give him a hug...no one likes to see their mom in pain, so explain that you are in pain because you and the radiation are fighting the cancer. I don't know how old he is, but you can ask him if he would like to draw you a picture of the two of you fighting the cancer as a team. if he is older, ask him how he is feeling about seeing you in pain, then tell him something he can do to help you feel better. this will not last forever. you may be at the beginning of your radiation battles, but this is the perfect time to determine how you want your son to remember these moments...do you want him to remember you crying or do you what him to remember your strength...don't think of it as how he will remember you if you don't make it, but how he will remember you if you do.

wishing you all the best, medication to help with the side effects, and tons of hugs...we all need a hug sometimes...so HUGS!
elizabeth

p.s. I still have dry mouth, but my youngest son is now 13 months old and I have gotten back most of my taste buds...things are different than they were before, food and life wise, but I am here to enjoy tasting food again and learning how to live with my new normal. good luck finding your new normal...it is quite a journey...I know you are up for it though!

Elizabeth...
What a beautiful, heartwarming response!!! You are a very strong woman who has inspired me to become stronger myself.

I hope akotke reads your post and is able to gain strength from you.

Stay well,
Glenna

rozaroo

Glenna M said:

Elizabeth...
What a beautiful, heartwarming response!!! You are a very strong woman who has inspired me to become stronger myself.

I hope akotke reads your post and is able to gain strength from you.

Stay well,
Glenna

Thank you Elizabeth!
You are an incredible human being & your post will help many of us to get through those bad day's!
God Bless
Roz

rozaroo

Glenna M said:

Elizabeth...
What a beautiful, heartwarming response!!! You are a very strong woman who has inspired me to become stronger myself.

I hope akotke reads your post and is able to gain strength from you.

Stay well,
Glenna

Thank you Elizabeth!
You are an incredible human being & your post will help many of us to get through those bad day's!
God Bless
Roz

OHNC survivor

Losing my mind
Hi akotke, I just joined CSN tonight, and yours is my first post. I felt so bad when I read it, I had to reply. I'm a 12yr survivor of stage III tonsil cancer, two major surgeries then, nine weeks of radiation. But, I remember it like it was yesterday. I have a few residual symptoms from the treatments, but,nothing that cannot be overcome, and I'm living a great life in the "new normal". If I can do it, believe me anyone can.
Now, please stop being so hard on yourself. "a wimp" are you kidding? The diagnosis is terrifying, and H&N treatments are some of the worst. My dear, you're entitled to feel exactly how you feel. You're on an emotional roller coaster. And, you can't "stop dwelling on it" It's not a hangnail, you know.
When I went thru hell and back, there was almost NO info for oral cancer. So, I vowed after recuperating that I would help those going thru the same thing. I facilitate an oral, H&N cancer support group, and counsel patients and survivors thru SPOHNC.(Support for People with Oral, Head & Neck Cancer). I have seen countless people at the beginning, just like you, fearful and depressed and coach them thru the long, dark tunnel of treatment. I'm happy to tell you that they come out at the end smiling. AND YOU WILL TOO. It takes a while, but you will heal, and it does get better.
Take it one day at a time, and go on autopilot until you're done. As symptoms arise, tell your docs and technicians. There are many products to help. Guided imagery, and relaxation tapes helped me during radiation. Do whatever you have to do to make yourself feel better. Keep telling yourself, this is a temporary glitch in my life. I will get over it.
I always say that the "Big C" stands not for cancer, but for COURAGE. And, don't worry, you have plenty of it whether you think so, or not.
If you want to email me privately, let me know.
Best wishes, Valerie