feeling sorry for myself

JacquieinFrance
JacquieinFrance Member Posts: 14
in Head and Neck Cancer #1

Hello, I'm new here but after reading some posts I finally realise I'm not alone. I had been cancer free since last June (Uvula) but just found out that the big C's back with a vengeance. So now I need my soft palate removed and replaced with grafts from my forearm and due to a necrosis of my jaw my teeth will probably have to be removed. Like many of you I've lost my sense of taste (except for salt), have difficulty swallowing and have lost 80 lbs so far (luckily I was obese and could afford the weight loss). I'm not sure I'm going to be able to cope with the after effects of all this.

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #2
    feeling sorry is OK

    JacquieinFrance,

    Welcome to the H&N forum, so sorry you are making this journey again.  Did you need to receive rads and chemo on your first go around?

    There are others here who have lived what you have described successfully (side effects and all).  Let us help you get through this mess one step at a time (if you wish).

    Since my stage IVa scc was not as complicated I will turn the knowledgeable answers over to those who know best, but I do know you can do it and come out the other side a healthier person.

    Best,

    Matt

  • Ruben and Jude
    Ruben and Jude Member Posts: 155
    #3
    Our positive thoughts and

    Our positive thoughts and prayers are with you Jacquie, for guidence and healing. You hang in, you are not alone.

    God Bless you.

    Ruben and Jude

  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #4
    Ruben and Jude said:

    Our positive thoughts and

    Our positive thoughts and prayers are with you Jacquie, for guidence and healing. You hang in, you are not alone.

    God Bless you.

    Ruben and Jude

    You are not alone....

    and whispered a prayer for you that all of this goes well and you come out NED one more time for good!  Believe!

    Tim

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #5
    Bienvenue Jacquine

    Sorry for your situation...., especially a second time.

    Stay positive and keep the fight..., a few here that have and are going through recurrence, and successfully at that. Given time, patience and some luck and faith thrown in, you will be back to your healthy self in the future.

    For now, fight, be positive, stay well hydrated, and never lose your sense of humor.

    Best,

    John

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #6
    Hi Jacquie

    I understand being overwhelmed.  I've been there before a few times, as have many of us.  You will have to take this whole thing one step at a time.  That is the only way to do this.  To worry about next month,  or next year will not help you at all.  Just do this one day after the next.  It is surprising how well you can accomodate things when viewed this way. 

     

    best wishes

     

    Pat

  • HobbsDoggy
    HobbsDoggy Member Posts: 276
    #7
    A Reasonable Feeling

    Not sure I would say you are feeling sorry for yourself as feeling "why me"? is sure a reasoned reaction.  A rough road for sure, but I pray that it  is a road that leads to good places.  To the best we can we will help support you in your fight.

  • Ingrid K
    Ingrid K Member Posts: 813
    #8
    Welcome...and you are allowed to feel like you do !!

    Jackie

    WELCOME.  Sorry you have to be here, but you are in good company here.  If you haven't already found it, check out the SUPERTHREAD --it is the first post in this group.  Has lots of very good info and tips for you.  (Stay off the other internet sites....info is very outdated and often inaccurate)

    You have the right to feel sorry for yourself !!  Especially since you've already battled this disease once before.  One to a customer is more than enough....we have many two-timers here also.

    You don't mention what treatment you had up until now.

    Do you have a feeding tube ?  If not, you may want to get one before your surgery.  You do not want to keep losing weight, you will need your strength to heal from surgery.  It sounds like your taste buds were already radiated....taste comes back, but it is slow and if you are facing more surgery...it will be a while until things taste good again.

    As far as eating (without teeth)...I did it for 2 years.  You can survive on formula through a feeding tube, or you can stick to a liquid high protein diet (Ensure-type), and then add smoothies and soft foods gradually.  Make sure you take in enough water....that is the most important advice I can give you.

    Let us know a little more about your treatment up until now.

    Come back and ask questions anytime...we have all been there in one form or another....and unfortunately we have become experts.

     

     

  • hwt
    hwt Member Posts: 2,328 Member
    #9
    Ingrid K said:

    Welcome...and you are allowed to feel like you do !!

    Jackie

    WELCOME.  Sorry you have to be here, but you are in good company here.  If you haven't already found it, check out the SUPERTHREAD --it is the first post in this group.  Has lots of very good info and tips for you.  (Stay off the other internet sites....info is very outdated and often inaccurate)

    You have the right to feel sorry for yourself !!  Especially since you've already battled this disease once before.  One to a customer is more than enough....we have many two-timers here also.

    You don't mention what treatment you had up until now.

    Do you have a feeding tube ?  If not, you may want to get one before your surgery.  You do not want to keep losing weight, you will need your strength to heal from surgery.  It sounds like your taste buds were already radiated....taste comes back, but it is slow and if you are facing more surgery...it will be a while until things taste good again.

    As far as eating (without teeth)...I did it for 2 years.  You can survive on formula through a feeding tube, or you can stick to a liquid high protein diet (Ensure-type), and then add smoothies and soft foods gradually.  Make sure you take in enough water....that is the most important advice I can give you.

    Let us know a little more about your treatment up until now.

    Come back and ask questions anytime...we have all been there in one form or another....and unfortunately we have become experts.

     

     

    You have every right

    I've often thought of how I would feel if I had a reoccurance. Devastated comes to mind first but then I imagine a person comes to terms with it and like the first time, you do what you have to do. One step at a time. I am so sorry you have to take this journey a second time.

    God bless,

    Candi 

  • wrhbounds
    wrhbounds Member Posts: 39
    #10
    been there

    Welcome sorry your here but lots of good people here. I have been close to where you are at in 99 I was diagnosed with T2N3 SCC in 08 had to have my jaw removed and replaced with my fibula and soft palette was replaced with my forearm. Today I am tube free I still have to use a blender to eat but I get by. Surgery was long and recovery was hard but double. Try to stay positive but to tell you the truth I do love a good pity party now and then. Bill

  • JacquieinFrance
    JacquieinFrance Member Posts: 14
    #11
    Thank you all for your

    Thank you all for your messages.

    One day  woke up with a lump the size of an orange on my neck under my left ear.

    I was diagnosed with cancer of the uvula in August 2011. I first had chemo (one eight hour session with docetaxel, cisplatine, fluorouacile, solumedrol and kytril plus 4 litres of water with minerals and carboplatine "to go" for 4 days on a portable drip at home for three sessions at three week intervals. A PET scan showed no sign of the original tumor but the lymph nodes were still too large and extensive for surgery, so I had a further three sessions of chemo associated with 30 sessions of radiotherapy to 3 sites in my neck and throat.

    Three months later, a PET scan showed only a problem area around the lymph nodes so I had a radical dissection which a follow up PET scan showed to be successful. A biopsy showed that the nodes were cancerous.

    Six months later, in March, a routine PET scan showed that the original tumor had returned. I've been referred to a University Hospital a few miles away as there are only 4 or 5 hospitals over here with teams able to remove and replace the soft palate with grafts.

    Well that's about it, I see the medical team tomorrow to program the operation.

    I won't go into all the ups (very few) and downs of the treatment so far - we've all been there.

    By the way, I got a perso message from a con man today  joykoffi23@yahoo.com usual Nigerian get rich fast scheme so be careful.

    Thanks again,

    Jacquie

  • JacquieinFrance
    JacquieinFrance Member Posts: 14
    #12
    Thank you all for your

    Thank you all for your messages.

  • wrhbounds
    wrhbounds Member Posts: 39
    #13
    JacquieinFrance said:

    Thank you all for your

    Thank you all for your messages.

    One day  woke up with a lump the size of an orange on my neck under my left ear.

    I was diagnosed with cancer of the uvula in August 2011. I first had chemo (one eight hour session with docetaxel, cisplatine, fluorouacile, solumedrol and kytril plus 4 litres of water with minerals and carboplatine "to go" for 4 days on a portable drip at home for three sessions at three week intervals. A PET scan showed no sign of the original tumor but the lymph nodes were still too large and extensive for surgery, so I had a further three sessions of chemo associated with 30 sessions of radiotherapy to 3 sites in my neck and throat.

    Three months later, a PET scan showed only a problem area around the lymph nodes so I had a radical dissection which a follow up PET scan showed to be successful. A biopsy showed that the nodes were cancerous.

    Six months later, in March, a routine PET scan showed that the original tumor had returned. I've been referred to a University Hospital a few miles away as there are only 4 or 5 hospitals over here with teams able to remove and replace the soft palate with grafts.

    Well that's about it, I see the medical team tomorrow to program the operation.

    I won't go into all the ups (very few) and downs of the treatment so far - we've all been there.

    By the way, I got a perso message from a con man today  joykoffi23@yahoo.com usual Nigerian get rich fast scheme so be careful.

    Thanks again,

    Jacquie

    like you

    The surgery to replace my manderble was done by the University of Texas 5 years ago. My cancer treatment was by Louisiana State University 14 years ago just thought this would help stay positive 

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