Hi friends...

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j4mie
j4mie Member Posts: 218
in Head and Neck Cancer #1

Well, here we are, nine days left. I sure am happy that Matt told me to leave 'my big girl pants on' for a little bit after my last post. I may have been a bit too 'upbeat' that early in the game. LOL!

I have been reading up on most of the new posts, and want to be around to help; especially the 'newbies' who are here, and scared. I know how much your kind words and wisdom meant to me when Pat was first diagnosed. I was filled with so much hope and encouragement, and I want to 'pay that forward'... Alas, we are running on empty here right now, and it takes about all that I have to keep the wheels turning on the bus here in our own neck of the woods. Yep, it got A LOT harder. Pretty fast too. We are hanging in there, but Pat did have a 6.5lb weight loss this past week and was borderline dehydrated. He's on two different nausea meds now that he alternates every 8hrs, but that didn't stop him from losing his dinner last night (what little he was able to get down). UGH! He is also started on the Magic Mouthwash. it all helps a little bit, but I know he is at wits end, wanting this to end. I also know how tired I am feeling (not even being the one who is actually going through this)...

I feel like we are running a marathon and we are five miles out, we can see the light at the end of the tunnel, but it is going to take everything we have to get to the finish line...just need some high fives right about now please...

Thanks friends...

Jamie

 

Comments

  • hwt
    hwt Member Posts: 2,328 Member
    #2
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    Jamie

    You & Pat are down to single digits...that's a big milestone! Stay strong, before you know it, this is all going to be in the rearview mirror. 

  • Sunshine60
    Sunshine60 Member Posts: 81
    #3
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    Day at a time....

    Or minutes sometimes. Always remember this is time limited ( easily forgotten while in the midst of it) but you will reach the finish line!  A bit more tired, but much wiser for sure.  Post often, especially if u feel you are struggling  ----- we are here for you!

  • TracyLynn72
    TracyLynn72 Member Posts: 839
    #4
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    I'm sending you

    lots of hugs and saying prayers for y'all.  I hit a wall with 6 treatments left.  Hit it HARD.  My rad oncologist was less than kind or helpful, but the awesome people on here pushed me through when I had decided to just quit and hope for the best.  They encouraged me, pushed me, helped me dig deep and now I am doing really, really well.  You are so close.  He is in the home stretch.  We all know exactly how he is feeling and I know it has to be a helpless feeling for you.  Hang tough.  Give him extra hugs from all of us.  We are fighting with y'all!  

  • phrannie51
    phrannie51 Member Posts: 4,716
    #5
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    Single digits....

    that just meant SO much to me during radiation.....a real countdown....8, 7, 6, 5........RING A DING!  With the nausea, I started taking a pill about 30 minutes before I sucked down a meal....then I sat in my recliner without moving for another 30 minutes.  I was so nervous about not getting food down and staying.   The whole thing with nausea, a tube won't help....it still goes in your stomach, and that's the body part that is jolting up and down and all around. 

    How is his swallowing doing?  Is he still able to get liquids down his gullet?

    p

     

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #6
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    you can borrow my pants, if you want?

    Jamie,

    Did we leave out, “it can sneak up on you”, well it can.

    Keep trying to deal with the nausea and nutrition.  If dehydration get to be too much he’ll need to check-in for quick fill me up, otherwise keep sipping water, it is good for hydration and  swallowing.  No matter how you do it, you need hydration and nutrition.

    By now he has figured out his rad techs, but remember they know he is about to peak with discomfort and are willing to help with prep time.  Once I had to stop everything, unmask, swish, spit, cough, refocus and do it.

    I went through 6 bottles of magic mouth wash (swished and sipped every drop.  Oregon makes a good vintage, what can I say.

    If you could just figure out the combination to his body’s code for dealing with side effects.  Don’t give up, you are almost there and then you can retire the old bus.

    Keep the nurses well informed of side effects, you may not be finished yet.

    Matt

  • Duggie88
    Duggie88 Member Posts: 760 Member
    #7
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    Jamie

    Your key words are "there is light at the ned of the tunnell" the only way to get there is to walk the walk. As others have said, the outcome makes the fight worth while. Single digits means healing is around the corner or that light just ahead.

    One step at a time

          Jeff

  • j4mie
    j4mie Member Posts: 218
    #8
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    Thank you all...

    I knew it was going to be hard to get up and go for both of us this morning, but of course all of your encouragement has helped us once again Wink I knew I could count on you guys to cheer us on and help get us moving out the door!!!

    So, here we go, off to run our marathon. After today only one more full week, and then a short three days and we will ring the bell...

    Thank you all for helping us get a second wind...I know you'll all be here if we need a third, forth, etc., etc....people who haven't been through this really have no idea how much it means to have support while battling something this big. Atleast, I never really 'got it' until now...

    Thank you friends...

    Jamie

  • j4mie
    j4mie Member Posts: 218
    #9
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    phrannie51 said:

    Single digits....

    that just meant SO much to me during radiation.....a real countdown....8, 7, 6, 5........RING A DING!  With the nausea, I started taking a pill about 30 minutes before I sucked down a meal....then I sat in my recliner without moving for another 30 minutes.  I was so nervous about not getting food down and staying.   The whole thing with nausea, a tube won't help....it still goes in your stomach, and that's the body part that is jolting up and down and all around. 

    How is his swallowing doing?  Is he still able to get liquids down his gullet?

    p

     

    Swallowing...

    Hi P! Yes, fortunately he is still able to swallow and does keep a drink by his side at all times. Even so, he was borderline dehydrated...UGH! I guess the best he can do is just keep trying to drink and drink, and drink...and hope that he doesn't get anymore dehydrated than he was (which was not quite enough to warrant an IV). One and a half weeks and counting! BTW, once he stops the treatments do we still need to worry about dehydration and weight loss for a bit, or will it get better just for the fact of not having the rads beaming on him each day?

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #10
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    CivilMatt said:

    you can borrow my pants, if you want?

    Jamie,

    Did we leave out, “it can sneak up on you”, well it can.

    Keep trying to deal with the nausea and nutrition.  If dehydration get to be too much he’ll need to check-in for quick fill me up, otherwise keep sipping water, it is good for hydration and  swallowing.  No matter how you do it, you need hydration and nutrition.

    By now he has figured out his rad techs, but remember they know he is about to peak with discomfort and are willing to help with prep time.  Once I had to stop everything, unmask, swish, spit, cough, refocus and do it.

    I went through 6 bottles of magic mouth wash (swished and sipped every drop.  Oregon makes a good vintage, what can I say.

    If you could just figure out the combination to his body’s code for dealing with side effects.  Don’t give up, you are almost there and then you can retire the old bus.

    Keep the nurses well informed of side effects, you may not be finished yet.

    Matt

    Wedgy

    “it can sneak up on you”

    Are you talking about your big girl pants now.., LOL....?

    JG

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #11
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    j4mie said:

    Thank you all...

    I knew it was going to be hard to get up and go for both of us this morning, but of course all of your encouragement has helped us once again Wink I knew I could count on you guys to cheer us on and help get us moving out the door!!!

    So, here we go, off to run our marathon. After today only one more full week, and then a short three days and we will ring the bell...

    Thank you all for helping us get a second wind...I know you'll all be here if we need a third, forth, etc., etc....people who haven't been through this really have no idea how much it means to have support while battling something this big. Atleast, I never really 'got it' until now...

    Thank you friends...

    Jamie

    jamie, seems like yesterday u

    jamie, seems like yesterday u just started and here u r about 2 ring the bell!!  that's fantastic.  one more full week then u will begin the healing process and u won't have to run out everyday.  u guyscan do it and we're right here w/u.  we r counting the days w/u and will ring our bells for u 2.  hang in there, the light is very close.  u can do it!!

    God bless you.

    dj

  • phrannie51
    phrannie51 Member Posts: 4,716
    #12
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    It seems to me

    sip and drink all day long, and still get dehydrated.....so many on here (me included) thought we were getting in enough water, but the treatments must be dehydrating in and of themselves.  So many of us have had to get hydrated via an IV somewhere along the way, and they are checking him everyday, so if he needs it, he'll get it. 

    You're reaching that part of treatment where all you can do is put your head down, and put one foot in front of the other....knowing that there is only a few more of these days and you don't have to leave the house everyday like the hardest job you ever took on in a lifetime.

    Almost over!!!

    p

  • TracyLynn72
    TracyLynn72 Member Posts: 839
    #13
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    j4mie said:

    Swallowing...

    Hi P! Yes, fortunately he is still able to swallow and does keep a drink by his side at all times. Even so, he was borderline dehydrated...UGH! I guess the best he can do is just keep trying to drink and drink, and drink...and hope that he doesn't get anymore dehydrated than he was (which was not quite enough to warrant an IV). One and a half weeks and counting! BTW, once he stops the treatments do we still need to worry about dehydration and weight loss for a bit, or will it get better just for the fact of not having the rads beaming on him each day?

    dehydration

    I got completely dehydrated twice and ended up in the hospital for a 4 hour IV of fluids and steroids.  I felt GREAT after, but then I lost my fluids again.  The PEG did help me get through that time, but once the actual rads stopped, I was able to maintain my fluid intake and weight.  You have my thoughts and prayers because sometimes this part is the worst, but I promise, promise, promise, that it will come to an end.  I just ate an ice cream sandwich while typing this.  I have to eat tiny bites and it's the only sweet thing that I enjoy...but I can do it again!  I was right where he is a few months ago and now I'm enjoying an ice cream sandwich (with a large glass of water!).  I have to eat it a little differently and wash it down, and then I have to go rinse my mouth all out with salt/soda water, but the fact is...I CAN eat it!  haha  Hang tough...y'all are very, very close.  I'll be truly happy for you when he is able to ring that bell.  It's coming soon. 

  • j4mie
    j4mie Member Posts: 218
    #14
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    Tis' the season and the song...

    Put one foot in front of the other
    And soon you’ll be walking cross the floor
    Put one foot in front of the other
    And soon you’ll be walking out the door

    From the old Rudolf Christmas classic...I think this will be our theme song for the next week and a half...Can't wait to be walkin' out that door in our own context. Thanks again for helping cheer us up today!

    Jamie

  • donfoo
    donfoo Member Posts: 1,771 Member
    #15
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    the mantra

    Hi Jamie,

    You are about where you need to focus on only three things and you will be fine. You may feel like dead man walking but you will be upright and walking out the other end if you put all your energy into:

    1) HYDRATION

    2) NUTRITION

    3) PAIN MANAGEMENT

    It is that simple, at least the concepts are. Many do not harp on #3 but it indirectly affects #1 and #2. When you are hurting it is hard to drink and eat. Managing the oral pain even for a short while gives you time and relief to drink and eat something. 

    Dehydration is sneaky and happens really fast and can catches you off guard. 

    Nutrition is much less intense an issue. You know how much you are losing this battle by a daily hop on the scale.

    Do not be shy to ask for narcos. Most of my doctors were lame and did not willingly offer up what I needed. I had to pretty much tell them what I wanted, then not such a big deal. The doctors I encountered were mostly not all that empathetic of the pain you suffer. I found one who was like the street ice cream vendor, willing to write script before I could finish my sentence. He was my goto drug dealer #1. :-) don

  • Steve5
    Steve5 Member Posts: 147
    #16
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    Helping a newbie

    Jamie - you and Pat are helping a newbie, I am reading your posts and getting prepared - even though I won't know until I am in it - this helps tremendously -it helps me manage the fear everyday to read how others are going through this - I can't wait to read your post when Pat is done and all the posts after that and I will take strength from that so that when I start I know there will be an end -all those that respond to all these posts are helping me everyday to move forward - thanks for helping me and go PAT!

    God Bless you and Pat

    Steve

  • j4mie
    j4mie Member Posts: 218
    #17
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    donfoo said:

    the mantra

    Hi Jamie,

    You are about where you need to focus on only three things and you will be fine. You may feel like dead man walking but you will be upright and walking out the other end if you put all your energy into:

    1) HYDRATION

    2) NUTRITION

    3) PAIN MANAGEMENT

    It is that simple, at least the concepts are. Many do not harp on #3 but it indirectly affects #1 and #2. When you are hurting it is hard to drink and eat. Managing the oral pain even for a short while gives you time and relief to drink and eat something. 

    Dehydration is sneaky and happens really fast and can catches you off guard. 

    Nutrition is much less intense an issue. You know how much you are losing this battle by a daily hop on the scale.

    Do not be shy to ask for narcos. Most of my doctors were lame and did not willingly offer up what I needed. I had to pretty much tell them what I wanted, then not such a big deal. The doctors I encountered were mostly not all that empathetic of the pain you suffer. I found one who was like the street ice cream vendor, willing to write script before I could finish my sentence. He was my goto drug dealer #1. :-) don

    Thanks Don!

    I agree! Hydration and pain management first and nutrition in a very close second. We too have found some docs that seem very stingy with their scripts, and others who practically throw them at you. Funny how some 'get it' when you are really in need of a script, and others want to see you tough it out for a bit before they begrudingly hand it over. This is definitely not a time that I feel warrants anymore 'toughing it out' than you absolutely have to.

    Jamie

  • j4mie
    j4mie Member Posts: 218
    #18
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    Steve5 said:

    Helping a newbie

    Jamie - you and Pat are helping a newbie, I am reading your posts and getting prepared - even though I won't know until I am in it - this helps tremendously -it helps me manage the fear everyday to read how others are going through this - I can't wait to read your post when Pat is done and all the posts after that and I will take strength from that so that when I start I know there will be an end -all those that respond to all these posts are helping me everyday to move forward - thanks for helping me and go PAT!

    God Bless you and Pat

    Steve

    That makes me happy!

    Steve,

    I'm really happy that you are able to read these posts and take some sort of comfort from them...a very short time ago, it was Pat and myself that were doing what you are doing now...reading what others were going through, how they handled it, and preparing to embark on our own journey down this road! It makes me happy to know that even though we are not all the way through this yet, it seems as though we have been able to help! Thanks for cheering Pat on, and know that we will be right here cheering you on all through your fight too! Smile

    Jamie

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