The new normal ?

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Robyn64
Robyn64 Member Posts: 124
edited June 2014 in Head and Neck Cancer #1

Hello,

 I havent posted very much lately. I am actually finding it difficult to stay on these sites and read the posts. So many of you having so many struggles during and after teatment. At times these posts do scare me and makes me wonder how am I going to cope, treatment starts on the 23rd. 

I know I just want to go back to my old self and just move forward with my life, burn my radiation mask and just put it all behind me and hope so much that it never returns. I know from many that I will never be the same again and this upsets me an awful lot. It makes me wonder how will my husband see me in the following year, We have been happily married for 25 years. I still want to be that happy go lucky girl that laughs a lot. I dont have any close friends at all but I have an awful lot of friends and amazingly so many people have contacted me with offers of help and giving their phone numbers, I never thought this would have happened. 

I havent heard from anybody on any site say that they go back to being their old self, just a new normal. I think after all treatment is well and done , whoever I become is scaring the hell out of me more than the treatment itself :-(

I have never been one to ever put anybody out, Im scared that I am going to need help at some point during treatment , which Im not used to asking for. Im scared that some people might see me , this sick person as a burden at some point, scared that Im going to have to hide that I might get very sick and cry when nobody is looking just so people will think Im still me.

Not sure if anybody knows what Im talking about ?

I still want to be that smiley girl , that people always find me approachable and happy, Im scared of losing all that.

I just want this part of my life to be over and done with. I didnt expect to be turning 50 and facing this, this is making me extremely sad beyond belief.

I met a friend for morning tea today who is in the middle of 3 months chemo then radiation for breast cancer. We spoke for 3 hours. She too wants to put it all behind her and move on as if it never happened, She is taking it all in her stride. I havent even started yet. 

I get a peg put in next monday and Im just lost, more so "that I will lose my identity".

Robyn

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Comments

  • wmc
    wmc Member Posts: 1,804
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    Yes we do know what you are talking about....

    Yes we do know what you are talking about. My cancer was of the larynx suporgoltic SSC T4,N2,M0 is what I was told before surgery. I was also told due to my severe emphasema I could not servive radation or the surgery, because they could not keep me breathing. I did have one option, a full laryngectomy and a trach to breath through my neck forever. Yes I jumped at that chose to stay alive, but then all the thoughts came. Would my wife of 38 years and son and grandsons stand to look at me with a hole in my neck and never talk the same. The answer to that is YES. As did all my co-workers when I went back to work in 10 weeks. To this day some will stare at me in a store [they just never saw someone that breaths through there neck but are afraid to ask why], but most [98%] don't and I really don't care. I am alive and I can do just about everything I ever did before. Now my limitations are from the COPD, not the cancer. Your family will understand as will most of your friends, some just won't but you will see thats Ok too. I would guess you have always been there for your family and now it is there turn to be there for you. Please don't deprive them of that, they need to do it not only for you but themself as well. Yes it is a bumpy road to go down. With your family helping and a suport group that this is you can make the journey much easer on you.  AS it turned out after the surgery I was T3, N0, M0, and had neck dissesion on both sides and removed 86 glands as a precaution, and I an cancer free for 8 months now. There has been a lot of good times with as well. I have to block the hole [Stoma] in my neck to talk and about once every day my wife will ask me a question when my hands are full, so I just smile and answer when I can. She knows I can't talk then but she won't treat me any differant then before. She will wait until I have a free hand to answer. 

    Remember when you have a bad day just come here and post and vent it out, we do.

    Bill   Oct 2013

  • jackflash22
    jackflash22 Member Posts: 524 Member
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    Happy

    Go to happy post and you will see what happened, there's always light at the end of the tunnel

  • Duggie88
    Duggie88 Member Posts: 760 Member
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    Robyn

     

    I can truly say what you’re going through is normal. You are worried about the new normal.  Cancer can never altar the real Robyn or your inner self but it may change your outer shell and that is the scariest part. I was so worried after my operation that my grandchildren would be scared to death of me. I had my surgery one week before Christmas a full neck dissection with a trach, a feeding tube coming out my nose, and four drainage tubes coming out of my neck.  Not to mention the swelling alone made me look like a monster. I couldn’t speak so I put it on paper for my wife and she assured me all would be well. Christmas came and she observed them as they came in to see their reaction and only one seemed scared and she nipped it in the bud. I have a granddaughter who was two at the time and she was fascinated with the visual change in her Paps and now she is six and still asks questions about my scar  and all that took place back then. 

     

    There is no old me only the new me and truthfully I wouldn’t change a thing because if I kept the old me I wouldn’t be typing my response to you now. The new me missed the old deep Barry White voice I use to have but I and everyone around me have grown accustom to the new voice. The only time anyone has said anything is when they call my office phone and get my voicemail. My pre-cancer voice is on there and the ones who aren’t aware of my battle ask about the other voice.   I look in the mirror and see the changes from the old me and realized I am really the only one who notices because everyone else has accepted the new me.  My wife (God love her) was my strength she held my hand and my heart through it all. I still joke with her and tell her she had her chance, she could have made it look like an accident back then with all the drugs I was on.

     

    You will always be that smiling Robyn and you will never lose your identity. The people in this forum will help you climb the highest mountain and will sit beside you and enjoy the ride down the other side. We know exactly what you’re talking about. Your about to take a journey, the ones that hop on board with you will support you don’t worry about the ones who missed the train. Many on this web site have already bought tickets for your journey and we will be right beside you throughout your ordeal.

     

    I’ve rambled on enough I need some coffee. One thing, if I had to do it all over again I would be first in line.

     

    Enjoy the day…………I do………….. every one of them

     

          Jeff

     

  • LumpinmyThroat
    LumpinmyThroat Member Posts: 98
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    Duggie88 said:

    Robyn

     

    I can truly say what you’re going through is normal. You are worried about the new normal.  Cancer can never altar the real Robyn or your inner self but it may change your outer shell and that is the scariest part. I was so worried after my operation that my grandchildren would be scared to death of me. I had my surgery one week before Christmas a full neck dissection with a trach, a feeding tube coming out my nose, and four drainage tubes coming out of my neck.  Not to mention the swelling alone made me look like a monster. I couldn’t speak so I put it on paper for my wife and she assured me all would be well. Christmas came and she observed them as they came in to see their reaction and only one seemed scared and she nipped it in the bud. I have a granddaughter who was two at the time and she was fascinated with the visual change in her Paps and now she is six and still asks questions about my scar  and all that took place back then. 

     

    There is no old me only the new me and truthfully I wouldn’t change a thing because if I kept the old me I wouldn’t be typing my response to you now. The new me missed the old deep Barry White voice I use to have but I and everyone around me have grown accustom to the new voice. The only time anyone has said anything is when they call my office phone and get my voicemail. My pre-cancer voice is on there and the ones who aren’t aware of my battle ask about the other voice.   I look in the mirror and see the changes from the old me and realized I am really the only one who notices because everyone else has accepted the new me.  My wife (God love her) was my strength she held my hand and my heart through it all. I still joke with her and tell her she had her chance, she could have made it look like an accident back then with all the drugs I was on.

     

    You will always be that smiling Robyn and you will never lose your identity. The people in this forum will help you climb the highest mountain and will sit beside you and enjoy the ride down the other side. We know exactly what you’re talking about. Your about to take a journey, the ones that hop on board with you will support you don’t worry about the ones who missed the train. Many on this web site have already bought tickets for your journey and we will be right beside you throughout your ordeal.

     

    I’ve rambled on enough I need some coffee. One thing, if I had to do it all over again I would be first in line.

     

    Enjoy the day…………I do………….. every one of them

     

          Jeff

     

    Change

    Smile

    I'm just at the beginning of my husband's battle, but I wanted to chime in beacuse I have been through the whole process once before with my mother. She had multiple myeloma. She did chemo continuously and had 2 bone marrow transplants. Through it all, she was her happy smiley self. She bounced around like any super happy person does. She always got compliments on her skin and her hair (wig) from people who had no idea. We found it hilarious. It never got her down. Don't let this beast intimidate you. Ball up your fists and beat it into the ground with your trademark smile. Hang in there. :)

  • Guzzle
    Guzzle Member Posts: 710
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    Duggie88 said:

    Robyn

     

    I can truly say what you’re going through is normal. You are worried about the new normal.  Cancer can never altar the real Robyn or your inner self but it may change your outer shell and that is the scariest part. I was so worried after my operation that my grandchildren would be scared to death of me. I had my surgery one week before Christmas a full neck dissection with a trach, a feeding tube coming out my nose, and four drainage tubes coming out of my neck.  Not to mention the swelling alone made me look like a monster. I couldn’t speak so I put it on paper for my wife and she assured me all would be well. Christmas came and she observed them as they came in to see their reaction and only one seemed scared and she nipped it in the bud. I have a granddaughter who was two at the time and she was fascinated with the visual change in her Paps and now she is six and still asks questions about my scar  and all that took place back then. 

     

    There is no old me only the new me and truthfully I wouldn’t change a thing because if I kept the old me I wouldn’t be typing my response to you now. The new me missed the old deep Barry White voice I use to have but I and everyone around me have grown accustom to the new voice. The only time anyone has said anything is when they call my office phone and get my voicemail. My pre-cancer voice is on there and the ones who aren’t aware of my battle ask about the other voice.   I look in the mirror and see the changes from the old me and realized I am really the only one who notices because everyone else has accepted the new me.  My wife (God love her) was my strength she held my hand and my heart through it all. I still joke with her and tell her she had her chance, she could have made it look like an accident back then with all the drugs I was on.

     

    You will always be that smiling Robyn and you will never lose your identity. The people in this forum will help you climb the highest mountain and will sit beside you and enjoy the ride down the other side. We know exactly what you’re talking about. Your about to take a journey, the ones that hop on board with you will support you don’t worry about the ones who missed the train. Many on this web site have already bought tickets for your journey and we will be right beside you throughout your ordeal.

     

    I’ve rambled on enough I need some coffee. One thing, if I had to do it all over again I would be first in line.

     

    Enjoy the day…………I do………….. every one of them

     

          Jeff

     

    Its tough

    Robyn, its tough but you will get through. I am one week post treatment. Just had check up and minimal side effects. Slightly sore throat. Burnt neck. Just been for lunch by beach. You will be there soon. One step at a time. Keep going. G.

  • jim and i
    jim and i Member Posts: 1,788 Member
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    Robyn, you will not change

    Robyn, you will not change the essence of who you are. Yes you will have bad days where you are angry, sad and frustrated but you can't tell me you have never felt those feelings before. Those who love you will see you with the eyes of love, just as they always have. Those who don't, aren't worth your time or thoughts. Part of what you are experiencing is realization that you are not in control and that is scary, perhaps that is the scarriest of all. I am a Christian and always thought I was letting God control my life. When Jim was doagnosed with cancer of the tongue I realized I really didn't have control of anything except my reactions. I am praying for your peace and comfort through this ordeal. Facing this unknown is scary but we here at CSN are holding you up and always available to listen, encourage and pray.

    Debbie

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
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    robyn, you are worrying about

    robyn, you are worrying about something that won't happen.  you will still be you on the inside.  those who loved you before cancer will also love you during and after.  if they don't, they didn't love you to start with.  you need to worry about being strong and getting thru tx.  praying for smooth travel and for very few side effects.  we will be here for you along the way so come here as often as you want.  we'll also be here the day you ring the bell and we'll all do the happy dance.

    God bless you,

    dj

  • MarineE5
    MarineE5 Member Posts: 1,034 Member
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    Mind Control

    Robyn,

    You have been given allot of good advice already. We all react differently to the fact we have cancer and are/were about to take a trip we didn't volunteer for. Many thoughts go thru our minds, good and bad. What we should try to do is put only positive thoughts in there, beat the beast as some stated.

    Our mind controls how we feel and how we feel controls how we act. So, each morning that we wake up, we start to make choices, do we want to be happy or sad, sounds simple, but it isn't, it is work to be happy at times. I am happy and grateful for each day that I am given.

    Yes, you will eventually have a "New Normal". Most of us don't sweat the small stuff any longer, we enjoy life as it is given. I still do allot of things I did before, go out to eat with friends and family. I may not eat what I once did, but I find something on the menu that works for me and have an enjoyable night out.

    The only person that can make you happy is yourself. The road ahead for you is an unknown and that is the scary part. I was fortunate as a neighbor that I didn't know well heard I had tongue cancer. He showed up at our door one night and explained what he went thru 7 years prior to my cancer. I never knew he had cancer as he was self employed and I saw his truck go by each day, not knowing that after treatments, he was doing his job. He had tonsil cancer. He is roughly 17 years out now.

    As it was mentioned earlier, come here to ask questions along the way, vent when you need to and know that you will get thru this. As my Drill Instructor told me in Boot Camp when I couldn't do a task. There are only 3 things you can't do. 1-slam a revolving door 2-strike a match on a wet bar of soap and 3- you can't put used toothpaste back into a used toothpaste tube, anything else you can do.

    His words echoed in my brain when I heard the words "You have cancer". I still see my D.I. each year.

    My Best to You and Everyone Here

  • Guzzle
    Guzzle Member Posts: 710
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    MarineE5 said:

    Mind Control

    Robyn,

    You have been given allot of good advice already. We all react differently to the fact we have cancer and are/were about to take a trip we didn't volunteer for. Many thoughts go thru our minds, good and bad. What we should try to do is put only positive thoughts in there, beat the beast as some stated.

    Our mind controls how we feel and how we feel controls how we act. So, each morning that we wake up, we start to make choices, do we want to be happy or sad, sounds simple, but it isn't, it is work to be happy at times. I am happy and grateful for each day that I am given.

    Yes, you will eventually have a "New Normal". Most of us don't sweat the small stuff any longer, we enjoy life as it is given. I still do allot of things I did before, go out to eat with friends and family. I may not eat what I once did, but I find something on the menu that works for me and have an enjoyable night out.

    The only person that can make you happy is yourself. The road ahead for you is an unknown and that is the scary part. I was fortunate as a neighbor that I didn't know well heard I had tongue cancer. He showed up at our door one night and explained what he went thru 7 years prior to my cancer. I never knew he had cancer as he was self employed and I saw his truck go by each day, not knowing that after treatments, he was doing his job. He had tonsil cancer. He is roughly 17 years out now.

    As it was mentioned earlier, come here to ask questions along the way, vent when you need to and know that you will get thru this. As my Drill Instructor told me in Boot Camp when I couldn't do a task. There are only 3 things you can't do. 1-slam a revolving door 2-strike a match on a wet bar of soap and 3- you can't put used toothpaste back into a used toothpaste tube, anything else you can do.

    His words echoed in my brain when I heard the words "You have cancer". I still see my D.I. each year.

    My Best to You and Everyone Here

    warrior poet

    Marine I salute you and your words. Robyn I am one week out of treatment. Scc tonsil three lymph nodes. Yesterday a cycled and took light excercise. Today Ive seen Dr today was very positive. I had 33 rads and 3 cysplatin. I have been out for lunch today and had three good meals as I lost maybe 16 pounds in treatment. I have worried like you. I know my words from UK may sound distant and hollow but I got through this with minimal side effects so far. Didn't need a tube but if I did I wouldn't have hesitated. I have been planning a family holiday for August today. A good buddy of mine from this site has just embarked on a trip with his family. You can do this. It will be over soon and you can plan good things,G.

  • CivilMatt
    CivilMatt Member Posts: 4,723 Member
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    new normal

    Robyn,

    June 23rd, my sister’s birthday.

    Unless you get a wish, the pre-cancer, old normal ship has sailed.  I use to think when I crossed the 50 year barrier, I dodged the cancer bullet, but at 56 I got hit.

    I could have gone a lifetime not knowing what is inside the Superthread, but it wasn’t to be.  Instead I am here and at about the middle of the road for side effects, my humor is in place and I have (virtually) met some wonderful people, who all did not volunteer to be a H&N member.

    I don’t think cancer is a big personality changer, but it does hype the appreciation.  If you are happy now you will most likely be happy post.

    After you do a thorough soul searching, then start preparing yourself mentally and physically to win this battle. As an example, I read on the H&N forum to drink lots of water and to swallow often.  I thought how easy is that?  Little did I know how valuable that information would be….I won that battle!

    Good luck on all fronts,

    Matt

  • Laralyn
    Laralyn Member Posts: 532
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    I don't post here as often

    I don't post here as often these days, but I visit almost every day. I finished my treatments June 1, 2012 for Stage IV SCC in my left tonsil, soft palate and one very enlarged lymph node. I had simultaneous radiation and chemo, and got pretty sick both from the chemo and from the strong narcotics which effectively shut my stomach down for about two months. It's a rare reaction but overall I'll be honest--the treatment can be brutal.

    Before cancer, I was constantly teased about how optimistic I was. I was a sunny person who was never seriously depressed about much of anything. I was the kind of person that never let any bad experience stick with me as soon as I got away from it. The diagnosis sent me into darkness. I think it sends all of us there, for a time.

    On the other side of treatments, I have a little trouble swallowing still, and need a couple glasses of water to get a meal down. My saliva level is low. My taste is about 50% for most things, a bit less for some or more for others. My stamina is lower, in general. My thyroid just cut out, so I've started on replacement hormones. I know I could have other side effects as time goes on.

    And you know what? I had a speaking engagement in March about the issues women face in my line of work (video games) and a part of the original talk was this statement: in March of 2012 I received a great gift when I was diagnosed with Stage IV cancer. It changed my life. I'm a different person now. I understand how much every minute, every person, every experience matters. I'm sunny again, and still as optimistic. You won't lose who you are. Think of this as a refinement. I actually feel MORE true to who I am--and more driven to become the person I want to be--than I ever did before.

    Yes, I do occasionally feel the darkness again. But now I know the way back out of it. I asked myself, when I was very worried going into my first scan, "OK, so let's say the worst happens and the scan shows recurrance--will you say to yourself 'Wow, I wish I had spent even more time worrying about cancer instead of living my life?'" Of course not! If I found out I had only a limited amount of time, I would spend it as well as I could. And the truth is, cancer or no cancer, we all ultimately have a limited amount of time.

    Have hope: there are many of us here who went through it and are on the other side, treasuring each moment we've lucky enough to have been given. Expect that you will be different on the other side--inside and outside. It's OK--time would change all of us anyway. Try to let go of that as a source of fear and anxiety. Don't worry about statistics and odds. You could be told you have 10% chance of success and be in that 10%. It is out of your control.

    What IS in your control is how you choose to spend your moments. I know it's frightening and you may feel like you're in a dark place now. Find the things that bring light into your life. If we can help here, let us be one of those sources of light. You're not in this alone.

  • michdjp
    michdjp Member Posts: 220
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    Laralyn said:

    I don't post here as often

    I don't post here as often these days, but I visit almost every day. I finished my treatments June 1, 2012 for Stage IV SCC in my left tonsil, soft palate and one very enlarged lymph node. I had simultaneous radiation and chemo, and got pretty sick both from the chemo and from the strong narcotics which effectively shut my stomach down for about two months. It's a rare reaction but overall I'll be honest--the treatment can be brutal.

    Before cancer, I was constantly teased about how optimistic I was. I was a sunny person who was never seriously depressed about much of anything. I was the kind of person that never let any bad experience stick with me as soon as I got away from it. The diagnosis sent me into darkness. I think it sends all of us there, for a time.

    On the other side of treatments, I have a little trouble swallowing still, and need a couple glasses of water to get a meal down. My saliva level is low. My taste is about 50% for most things, a bit less for some or more for others. My stamina is lower, in general. My thyroid just cut out, so I've started on replacement hormones. I know I could have other side effects as time goes on.

    And you know what? I had a speaking engagement in March about the issues women face in my line of work (video games) and a part of the original talk was this statement: in March of 2012 I received a great gift when I was diagnosed with Stage IV cancer. It changed my life. I'm a different person now. I understand how much every minute, every person, every experience matters. I'm sunny again, and still as optimistic. You won't lose who you are. Think of this as a refinement. I actually feel MORE true to who I am--and more driven to become the person I want to be--than I ever did before.

    Yes, I do occasionally feel the darkness again. But now I know the way back out of it. I asked myself, when I was very worried going into my first scan, "OK, so let's say the worst happens and the scan shows recurrance--will you say to yourself 'Wow, I wish I had spent even more time worrying about cancer instead of living my life?'" Of course not! If I found out I had only a limited amount of time, I would spend it as well as I could. And the truth is, cancer or no cancer, we all ultimately have a limited amount of time.

    Have hope: there are many of us here who went through it and are on the other side, treasuring each moment we've lucky enough to have been given. Expect that you will be different on the other side--inside and outside. It's OK--time would change all of us anyway. Try to let go of that as a source of fear and anxiety. Don't worry about statistics and odds. You could be told you have 10% chance of success and be in that 10%. It is out of your control.

    What IS in your control is how you choose to spend your moments. I know it's frightening and you may feel like you're in a dark place now. Find the things that bring light into your life. If we can help here, let us be one of those sources of light. You're not in this alone.

    Very true to heart words. My

    Very true to heart words. My dad is almost 3 years since diagnosed and I just wanted to say how i enjoyed reading your post.  It was very heartfelt and true. Thank you for taking time to put that into words.  

    michelle

  • patricke
    patricke Member Posts: 570
    Options
    YOU NEVER KNOW

    Hey Robyn, 

    One of the things that I have learned from the heartfelt, generous sharing that are in the posts on this board, is that you never know how the treatment will effect someone when they begin the journey.  There are many factors that come into play in regard to the treatment regimen for each person.  One thing that I always hear is that whatever the effects of treatment everyone fights the beast with everthing that they've got always keeping their eyes on the prize of getting to the end of the tunnel to the other side.  Once on the other side the most important thing is that we are all still here, and we do whatever we need to do to make the most of our lives.  Some of us have to make greater changes than others, but that is neither here nor there, as the important thing, to repeat, is that we are here.  The answers to your questions and concerns are beautifully addressed in all of the foregoing posts with great wisdom, support, and love.  Whatever the effects are, we need to be flexible, adaptable, problem solvers (when necessary), solution seekers (when necessary), and make the best of whatever our situation may be; enter the Serenity Prayer.  We're here for you.  Focus on beating the beast; take it one day at a time (that is a very important, functional adage for us to follow), you will still be you and, as it has been said before, those who love you will still love you, maybe even more.  Yes, it is scary, but you will get through it.  As I am want to say, I am just happy to be here.  So, armor on, weapons ready, buckle your seatbelt, and keep it mov'in forward!  Here's sending you all of the best!  

    PATRICK

  • donfoo
    donfoo Member Posts: 1,773 Member
    Options
    not sure what you are reading...

     

    I know from many that I will never be the same again and this upsets me an awful lot.

    Hello,

    We all felt the dianosis of cancer as scary and like being hit by a freight train. But from that moment forward we all follow our own path, both mentally and physically. Many words of comfort help no doubt but do nothing to prepare you for your journey.

    What shocked me, pretty hard to do these days, was the above statement. You are either not reading and researching enough or not reading the right information in the right place or are an enternal pessimist . I do not mean to be blunt but this is frankly just plain wrong.

    The fact is many come away from oral cancer with mininal, if any, long term side effects worth writing on the board. You can refer to my own post just a week ago where I stated I was embarassed to mention the remaining identifiable side effects: the slightest tigthness in my neck when I stretch and sweat on my head when I eat very spicy foods.

    The fact is many who post here are in the midst of treatment and recovery or those who have lingering side effects and other complications. True, many, if not all of us, report pretty severe side effects during treatment and recovery.

    The fact is many who complete recovery do very well and go right back lock step with their previous lives and do just as you state - put this horrible disease and treatment regimen behind you for good. Many rarely post again, even if they keep lurking.

    If you were in good health before, you have a very very good chance to complete your recovery with cancer KILLED and very likely will experience good health again.

    Something like a PEG is almost always short term and removed a few weeks after rads end. Major pain is short term. Really difficult to eat, als short term as is those burns on your neck.

    Unless there are special circumstances that dictate you should get a PEG before starting, I would push back and ask why you need a PEG before starting treatments. Ask if you can wait and have one inserted if/when you really need one. Ask them directly if there is less chance of long term swallow issues if you continue eating and drinking throgout without a PEG.

    Ask and probe hard about the radiation map being designed by the Radiation Oncoligist, Dosimetrist, and Physician. Demonstrate some knowledge and keen interest to know the map being designed is optmized. Remember, your case is just one in the pile of the daily workload for the dosimitrist. Your probing may very well initiate a second look and extra consideration by the dosimetrist and a few tweaks may very well direct rads to less critical areas.

    I can not confirm with certainty but feel very strongly that my lack of side effects is related to the level of conversations with my RO. I was fairly aggressive in my questioning about the map. We reviewed it in some detail and I was very clear communicating the need to spare my parotid glands and thyroid etc. Today, I have 100% saliva production and zero side effect on my thyroid function at the one year post mark. Again, I can not confirm this but in my heart and soul I believe this made a big difference. This is the way you want to feel - absolutely convinced you did everything possible to effect the best outcomes. I have not lost a single hour of sleep wondering if I could have done anything more or different. Isn't that the goal?

    If you truly want the fewest side effects, please get informed, you have some time, and blast away with questions about every aspect of your diagnosis and treatment. There is absolutely no better way to alleviate your fear and concerns than to get as educated as you can and be the co-pilot on this no doubt pretty bumpy flight.  Best to you, Don

  • Robyn64
    Robyn64 Member Posts: 124
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    Thank you

    Hi everyone,

    Thank you for your comments. 

    I have the peg put in tomorrow morning at 7.30. I am very nervous but I do feel it is something that needs to be done , I am worried I may not be able to eat properly by the 4th week. 

    I have been trying to boost my immune system the last few weeks, I hope it helps when treatment starts on the 23rd.

    Thank you all for your comments,

     

    Robyn

  • PJ47
    PJ47 Member Posts: 376
    Options
    All your concerns are valid

    I believe you will still be yourself but "better"; stronger, confident, more attuned to others, more appreciative of everything, more kind, more tolerant and many other beneficial gifts unique to your self. 

    Allow the process to happen, and you will be the "new and improved you", honed by this very challanging life experience.  It is very difficult to be on the receiving end of help, but this too is a unique learning experience.  It's like an awakening to the other side of giving where you get to give the giver the joy of helping you.

    I do not know exactly how to explain it, but I feel honed and chiseled to how I was meant to be all along.  Sounds wierd huh?  The hardest part for me was when I pulled back from life and became disinterested in all things and events around me.  Looking back it may have been the pain or a natural process to survive the ordeal.  My world became miniscule and that was hard as I normally am interested in most everything around me and totally enthusiastic  I got that back, however, in spades and the joy in life is even sweeter than before!

    After you have this under your belt, give me a shout out to let me know about the new, improved Robyn!

    All the best wishes for your treatment success and may you experience many blessings along the way,

    PJ

  • catfish_58
    catfish_58 Member Posts: 138 Member
    Options
    Normal

    I think most of us have gone through and are going through what your going through,Once your treatments start and are over with you'll understand all the things others have endured.healing begins and takes a long time in some cases and in others seems like it heals more quickly,But by all means we hope you'll be with others here to share your experience and knowledge,To help someone else through those trying times.most are scared of the unknown I remember thinking back being scared sh******.I thought why me and I also thought no one else could ever understand what I was feeling or going through at that time.I thought I was alone till I found this site and had a tremendous amount of support and encouragement.These feelings are the usual,Time will tell and time will heal.I feel pretty much the same as I was before the treatments,Slowly retriving my saliva back and taste is coming back,There will be some scarry times here and there,But call on anyone here and they will answer back as soon as they can,Be strong you can make it.Be positive too,helps tremendously,Read up if you get a chance on the Superthread (Read only) ~ contributed by Sweetblood22 link

  • Mikemetz
    Mikemetz Member Posts: 465 Member
    Options
    Nike poster

    I once saw a Nike poster that said, "Sports doesn't build character, it reveals character"  Same with cancer, I think.

    mike

     

     

  • KB56
    KB56 Member Posts: 318 Member
    Options
    The new normal

    Robyn, sorry for my delay in responding but I was in Mexico on vacation with the family.   We had a lot to celebrate this past week.  My 1 year anniversary of my last radiation treatment on June 11th, my daughter's 26th birthday/ Father's Day on a June 15th, my birthday/my daughter's 2nd wedding anniversary on June 16th.  A great week to celebrate life!    

    Many others have posted their thoughts but I want to assure you that once you finish your treatment and are cancer free, unless you tell the people they will never know you've had and beat cancer.  You will still laugh, be yourself and you will smile more than ever.  I can promise you that you will appreciate life, and every little thing more than you ever did before.   you will feel and be happy, and your spirit will bring joy to everyone around you.  

    We all think about recurrence from time to time but no one knows how much time any of us have left.  Those who have fought and beat cancer or those who have been healthy their entire life, no one knows.   I consider every day I have from cancer free forward is like a gift, and I try not to waste a day thinking about things I can't control.  In the unlikely event it happens I'll deal with it.  My new normal is better than my old self and my old self was a nice guy that loved to laugh and always treated people with respect.  Now I have so much more empathy to others and I had a lot to begin with and life is just better as I really don't sweat the small stuff.  

    You're at the toughest part of the journey now, right before everything gets started.  Your mind is racing and you're doing all the things you need to do to be fully prepared.  You are doing great by the way! You've gone to the dentist and didn't have to have a single tooth pulled and you were concerned about that, you're getting your PEG tube in so it will be there if your need it, and once it starts you will get in a routine until you finish.  Then you will heal and after a period of time you will be back to your old self, maybe better.   Like your husband said, focus on the end point not the in between ( I love that comment and it's so true).  Your family and friends ( and us of course) will be there when it does get tough and it will go fast.  You will not be a burden and your friends/family will be there because of your old self. 

    I'm sorry to ramble but you can and will do this and will like the person you will become.  

    Stay Strong

    Keith

  • Robyn64
    Robyn64 Member Posts: 124
    Options
    KB56 said:

    The new normal

    Robyn, sorry for my delay in responding but I was in Mexico on vacation with the family.   We had a lot to celebrate this past week.  My 1 year anniversary of my last radiation treatment on June 11th, my daughter's 26th birthday/ Father's Day on a June 15th, my birthday/my daughter's 2nd wedding anniversary on June 16th.  A great week to celebrate life!    

    Many others have posted their thoughts but I want to assure you that once you finish your treatment and are cancer free, unless you tell the people they will never know you've had and beat cancer.  You will still laugh, be yourself and you will smile more than ever.  I can promise you that you will appreciate life, and every little thing more than you ever did before.   you will feel and be happy, and your spirit will bring joy to everyone around you.  

    We all think about recurrence from time to time but no one knows how much time any of us have left.  Those who have fought and beat cancer or those who have been healthy their entire life, no one knows.   I consider every day I have from cancer free forward is like a gift, and I try not to waste a day thinking about things I can't control.  In the unlikely event it happens I'll deal with it.  My new normal is better than my old self and my old self was a nice guy that loved to laugh and always treated people with respect.  Now I have so much more empathy to others and I had a lot to begin with and life is just better as I really don't sweat the small stuff.  

    You're at the toughest part of the journey now, right before everything gets started.  Your mind is racing and you're doing all the things you need to do to be fully prepared.  You are doing great by the way! You've gone to the dentist and didn't have to have a single tooth pulled and you were concerned about that, you're getting your PEG tube in so it will be there if your need it, and once it starts you will get in a routine until you finish.  Then you will heal and after a period of time you will be back to your old self, maybe better.   Like your husband said, focus on the end point not the in between ( I love that comment and it's so true).  Your family and friends ( and us of course) will be there when it does get tough and it will go fast.  You will not be a burden and your friends/family will be there because of your old self. 

    I'm sorry to ramble but you can and will do this and will like the person you will become.  

    Stay Strong

    Keith

    thank you very much

    Thank you very much Keith, I loved your comment. Thank you everybody.

    Peg is now in, its been just on 2 days, lots of pain and adjusting. I know I will get there, its going to be tough. I cant wait for it to be over. Treatment starts next monday.

    Thank you,

    Robyn