Bad trip !

I should get on more and keep better track of all you sweet people on here and I hope things will get better for all of us in our own time. I do think of each of you even though I may not be online.

What a trip, and I don't mean in a good way. This last two weeks has totally been a nightmare. My face is swollen, burnt, bleeding. I can't stand to even touch it. 

I still can't tolerate food, tastes horrible ( like super salty ). And having this Peg tube checked on Wednesday with a * emptying test *..to see why the food doesn't want to go down through and out properly. I have lost around 25 pounds total now. I just have to drain out the tube when it gets too tight, I really think it is all the pain pills and not enough laxative. So I am trying to stay in a bit more pain and take an extra laxative this week-end to see if it will help. They have been talking about using a pump to feed me, will know more after test.

 

I am going to ask the Doc for a week without Rads, I just can't get the pain to stop when they put me in and it just swells my face even more. I will try to add a close up of my face to give you a better idea of how painful. I also found out the main tumor is right between my eyes and about 1 1/2 inches in...

 

I can smell a lot more now, and hoping taste follows soon. Was told they would let me finish ( cooking) for about a couple months after my last rad session, and then start scans to see about re-construction, and will keep Peg and port for longer than I thought as well. 

 

Thank you for the prayers for my Mama as well, she started Chemo only to find out she is having an allergic reaction to one of them, they are checking to find out which one.  And my younger brother came through his throat surgery again, hoping they got all the cancer for a second time. It came back quick on him, wasn’t even a full year. 

 

My eyes swelling and weeping, so getting off, just wanted to update and read what is happening with the Best and bravest bunch of people on the Internet.

 

Prayers and Hugs !!!!!!   Kritter

Radiation burn

Comments

  • wmc
    wmc Member Posts: 1,804
    Wow, Just one day at a Time.

    I know it's hard and the week off should help. Just keep telling your self, just one more day. Every day and you can get through this. It can be like going to hell and back, but you will make it, and beat it as well. Write when you feel like it and know we do understand. Keep positive and we'll keep the prayers coming. Keel a journal to go back years later to remember. Your Grandchildren might want to know how you fought this, so you could see them grow.

    Bill

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    prayers and hugs, ok

    Kritter,

    It looks like you are really feeling it.  Hang tough and keep working the problems and you will get through it.

    Sending good mojo.

    Matt

  • Duggie88
    Duggie88 Member Posts: 760 Member
    Not an easy battle

    But one worth fighting. All during it seems like a nightmare and you keep looking for something to give you that spark to keep moving forward. I reflect back at the start of my battle five years ago and realize today it was worth every once of energy I had because the reward was great. The doctors are on your payroll, you pay them to advise you so you can make the decisions. They may advise you to take more pain meds and up the laxative.

    You give the term fighting with the family a new meaning. My thoughts and prayers are with you and your family that you all find the strength to push forward to find that sigh of relief at the end of the battleand begin the healing process.

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

          Jeff

     

  • txpipeliner
    txpipeliner Member Posts: 33
    Duggie88 said:

    Not an easy battle

    But one worth fighting. All during it seems like a nightmare and you keep looking for something to give you that spark to keep moving forward. I reflect back at the start of my battle five years ago and realize today it was worth every once of energy I had because the reward was great. The doctors are on your payroll, you pay them to advise you so you can make the decisions. They may advise you to take more pain meds and up the laxative.

    You give the term fighting with the family a new meaning. My thoughts and prayers are with you and your family that you all find the strength to push forward to find that sigh of relief at the end of the battleand begin the healing process.

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

          Jeff

     

    its not easy

    kitter i feal your pain my face looked like that after surgery, it was tough but you are tougher and will be starting to heal i am praying for you speedy recovery.

  • Sailor123
    Sailor123 Member Posts: 97
    Dearest Kritter:
    I am so

    Dearest Kritter:

    I am so sorry for your suffering.  It is so hard to see clearly when you are in the middle of it.  Everything does heal, it just takes time.  Did you know there is no need to take laxatives when you have a PEG tube.  I put prune juice directly into the tube and never needed laxatives.  Go natural.  It works.

    Shirley

  • tommyodavey
    tommyodavey Member Posts: 726 Member
    Sailor123 said:

    Dearest Kritter:
    I am so

    Dearest Kritter:

    I am so sorry for your suffering.  It is so hard to see clearly when you are in the middle of it.  Everything does heal, it just takes time.  Did you know there is no need to take laxatives when you have a PEG tube.  I put prune juice directly into the tube and never needed laxatives.  Go natural.  It works.

    Shirley

    Suffering So Much

    Hi Kritter,

     

    It will get better, it will get better.  You need to keep telling yourself that.  This is only temporary and once the healing starts and you have some time away from all this, you'll start to forget how bad it was.  Not so much forget, you just won't think about it daily like you are now.  I pray you'll heal soon.

    The picture is painful to look at.

     

    Tom

  • Hondo
    Hondo Member Posts: 6,636 Member
    Hi Kritter

    It’s hard but hang in there, like Bill said take it one day at a time and every day makes it one day closer to being finish. We are all praying for you so continue to put your faith in God’s hands and remember you will get through this and you will be a survivor

    God Bless you while in His Workshop

    Tim Hondo

  • katenorwood
    katenorwood Member Posts: 1,912
    words can't express

    I haven't been posting much lately.  Popped in on your thread.  I am so sorry things are hitting so hard.  You have a positive attitude, which is wonderful to read !  I hope they figure out the peg situation for you soon.  On the pain med issue, have you spoken with your onc nurse about this ?  I hate to think of you in pain, but I also know what they can do to our systems.  Make them help you out on this one please.  In order to heal properly and get through tx's, we sometimes need to do a balancing act.  I also want to send a message of hope and prayer for your Mother and Brother.  Oh hon, all of this happening at once.  Know that we are here for you always, and I will be thinking only positives until I read things are better for you all !  Hugs sent !  Katie 

  • jim and i
    jim and i Member Posts: 1,788 Member
    So sorry for your pain and

    So sorry for your pain and suffering. Keeping you in prayer for strength and comfort during this time.

    Debbie

  • Kritter
    Kritter Member Posts: 147
    wmc said:

    Wow, Just one day at a Time.

    I know it's hard and the week off should help. Just keep telling your self, just one more day. Every day and you can get through this. It can be like going to hell and back, but you will make it, and beat it as well. Write when you feel like it and know we do understand. Keep positive and we'll keep the prayers coming. Keel a journal to go back years later to remember. Your Grandchildren might want to know how you fought this, so you could see them grow.

    Bill

    Hi Bill

    Thank you for the words of encourgement. I put my * Big girl panties on * and went back into radiation today. I only have 12 more and I am telling myself I have come too far to stop now. Plus they gave me permission to take a few more pain pills. I have been keeping a journal, but no grandchildrn in my future, but hoping someone will be able to usethe info I have put into it. I hope you are doing well, and getting ready for the holidays. Hugs and Prayers, Kritter

  • Kritter
    Kritter Member Posts: 147
    CivilMatt said:

    prayers and hugs, ok

    Kritter,

    It looks like you are really feeling it.  Hang tough and keep working the problems and you will get through it.

    Sending good mojo.

    Matt

    Hi Matt

    Thank you for good mojo, really feeling it and I know I am close to the end, so going for it. I do hope you are getting ready for the holidays. Prayers and hugs.. Kritter

  • Kritter
    Kritter Member Posts: 147
    Duggie88 said:

    Not an easy battle

    But one worth fighting. All during it seems like a nightmare and you keep looking for something to give you that spark to keep moving forward. I reflect back at the start of my battle five years ago and realize today it was worth every once of energy I had because the reward was great. The doctors are on your payroll, you pay them to advise you so you can make the decisions. They may advise you to take more pain meds and up the laxative.

    You give the term fighting with the family a new meaning. My thoughts and prayers are with you and your family that you all find the strength to push forward to find that sigh of relief at the end of the battleand begin the healing process.

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

          Jeff

     

    Hello Jeff

    What a nightmare is so totally hitting it on the head. I did ask and they upped my pain pills and laxitives, have a stomach emptying test tomorrow so that should help me get my stomach aches better as well. 

    My family is going through so much right now, but we are all trying to hold strong and help each other. 

    I am trying to start each day with a smile, even if it hurts my face to do so. You are an inspiration to all on here who gives us hope, and yet you are battling yourself. 

    I hope you and yours have a blessed holiday season. Prayers and Hugs.. Kritter

  • Kritter
    Kritter Member Posts: 147

    its not easy

    kitter i feal your pain my face looked like that after surgery, it was tough but you are tougher and will be starting to heal i am praying for you speedy recovery.

    Not easy

    I have decided this will not beat me, I am going to do what it takes to win. Thank you for your prayers and I hope you have a very wonderful holiday. Prayers and Hugs.. Kritter

  • Kritter
    Kritter Member Posts: 147
    Sailor123 said:

    Dearest Kritter:
    I am so

    Dearest Kritter:

    I am so sorry for your suffering.  It is so hard to see clearly when you are in the middle of it.  Everything does heal, it just takes time.  Did you know there is no need to take laxatives when you have a PEG tube.  I put prune juice directly into the tube and never needed laxatives.  Go natural.  It works.

    Shirley

    Hi Shirley

    Right now I have trouble seeing anything, as my eys are always sealing shut, if they are closed for even a short length of time. But picked up a med for that, so will see how it goes. Thanks for the tip on the PEG.. but my issue is food doesn't digest at all, it comes back up or I have to drain it out through tube. So test tomorrow to see why this is happening, Doc unhappy with weight loss. I hope you have a wonderful holiday season and find lots of reasons to smile. Prayers and Hugs... Kritter

  • Kritter
    Kritter Member Posts: 147
    Hondo said:

    Hi Kritter

    It’s hard but hang in there, like Bill said take it one day at a time and every day makes it one day closer to being finish. We are all praying for you so continue to put your faith in God’s hands and remember you will get through this and you will be a survivor

    God Bless you while in His Workshop

    Tim Hondo

    Hondo

    One day at a time... 12 more rads to go. Right now.. with my whole family situation, it looks hopeless at times, but I will make it over this mountain and so will they. 

    I read you are having issues again and I hope they are getting it under control. And you have a Blessed holiday season. Prayers and hugs.. Kritter

  • Kritter
    Kritter Member Posts: 147

    words can't express

    I haven't been posting much lately.  Popped in on your thread.  I am so sorry things are hitting so hard.  You have a positive attitude, which is wonderful to read !  I hope they figure out the peg situation for you soon.  On the pain med issue, have you spoken with your onc nurse about this ?  I hate to think of you in pain, but I also know what they can do to our systems.  Make them help you out on this one please.  In order to heal properly and get through tx's, we sometimes need to do a balancing act.  I also want to send a message of hope and prayer for your Mother and Brother.  Oh hon, all of this happening at once.  Know that we are here for you always, and I will be thinking only positives until I read things are better for you all !  Hugs sent !  Katie 

    Hi Katie

    I met with my Doc yesterday and he upped the pain meds and the laxative, recommended vaporizers in my room to help moisten the air. And he says we have the tumor dissappearing, so please lets try to keep going. My Rad team is very caring and very cautious with me, they are just so wonderful. Once we get my PEG working right I may be able to gain some weight back, and give me more strength. 

    My family are doing better this week as well. I lost one younger brother to pancreatic cancer and now another one fighting throat cancer. Mama is doing better with the itching and they are researching new chemo med for her. 

    My thoughts and prayers are with you as well. I hope you have a blessed holiday season.. Prayers and Hugs... Kritter

  • Kritter
    Kritter Member Posts: 147
    jim and i said:

    So sorry for your pain and

    So sorry for your pain and suffering. Keeping you in prayer for strength and comfort during this time.

    Debbie

    Hi Debbie

    Thank you so much... * Big girl panties * are on and in fighting mode again!... I hope all is well with you and yours and you have Blessed holiday season. Prayers and Hugs.. Kritter

  • Hondo
    Hondo Member Posts: 6,636 Member
    Kritter said:

    Hondo

    One day at a time... 12 more rads to go. Right now.. with my whole family situation, it looks hopeless at times, but I will make it over this mountain and so will they. 

    I read you are having issues again and I hope they are getting it under control. And you have a Blessed holiday season. Prayers and hugs.. Kritter

    Pneumonia

     

    Yes I have been really sick fighting pneumonia, having a lot of pain in the lower right lung. But I met a really good Lung doctor a few weeks ago who has been helping me get over this so for now I am on the mend and feeling good once again. There is always ups and downs in our life so one day at a time is all we can ask for.

     

    Now I am praying for a wonderful holiday and new year with my family, I also have two of my brothers coming over to spend some time with me, really looking forward to that

     

    Hang in there after today it will be only 11 more left to do, I did the last week standing on my head I was so glad to be finished. J

     

    Tim Hondo  

  • MrsBD
    MrsBD Member Posts: 615 Member
    Dear Kritter,

    You will be in my prayers. Some of the treatments cause so much pain we wonder if any good can come of it. Watch carefully for small blessings and try to keep a sense of humor. My neck was burned black about a week after finishing radiation, but it healed. ( I no longer have to keep a tweezers handy, though. You ladies of a certain age know what I mean.) I had a terrible acne-like rash from chemo, but it made my eyelashes grow! Take comfort in the nurses, those ministering angels. This is temporary. You will feel better soon!

  • jackflash22
    jackflash22 Member Posts: 524 Member
    Kritter said:

    Hi Shirley

    Right now I have trouble seeing anything, as my eys are always sealing shut, if they are closed for even a short length of time. But picked up a med for that, so will see how it goes. Thanks for the tip on the PEG.. but my issue is food doesn't digest at all, it comes back up or I have to drain it out through tube. So test tomorrow to see why this is happening, Doc unhappy with weight loss. I hope you have a wonderful holiday season and find lots of reasons to smile. Prayers and Hugs... Kritter

    What food

    are you on, it may be what's upsetting your bowel and stomach. I can't digest ensure 2 cal it's too rich and thick. I find ensure plus better.