Needed to write, good news, boost needed, still leaning

Steve5
Steve5 Member Posts: 147
in Head and Neck Cancer #1

Haven't been back to my lifeline for a little bit, just looking for a little boost from you all - sorry to ask, sorry to feel like whining - I have 15 rad and 2 chemo treatments to go - living on ensure and water, started supplementing water into my feeding tube, I feel light headed when I get up, so not enough water - I am putting blueberries in my water bottle and occassionally a little squirt of lemon juice, have lost 15 lbs to date but holding now with ensure, a little ear ringing and of course a scratchy throat with no taste - got two days off from treatment because of my throat- don't have any energy a few days after chemo and just sit literally - sleep is off and on and usually manage better the two days before chemo - I did get good news from my rad/onco and the H&N specialist yesterday that the tumor on my tonsil is gone and that I have about a 1 cm from feel lymph node still to go - I try to stay even keeled through all this and let my better half smile and get happy about it, I am waiting for the PET/CT in late April to show it is gone and then of course the few years out - I guess from what I have read from all of you that this is how it will go for the next 3 weeks of treatment finishing up, the 2 worst weeks after that and then the day by day - I want to say that I feel fortunate because it seems others here have it worse than me or I just haven't reached the low mark yet, and at the same time am reaching out for just a "keep going" from you - sorry to ask for so much and not have so much to give back- I hope all of you are well and thank you for getting me here - for some reason just writing helps, so trying to look upward in some strange way, how is it that vanilla and chocolate ensure have a taste, but nothing else does, aside from an occasional punch or strawberry jello -

A belated wonderful holiday to all, I hope you are surrounded by warm family and friends and I hope and pray for all the best for you

Steve

ps - I will get a picture up soon, I think it only fair - and thanks for letting me write

«1

Comments

  • phrannie51
    phrannie51 Member Posts: 4,716
    #2
    You sound like you're

    you're on par with many of us, and I don't hear any whining at all.....Be assured, tho.....that there is NO SUCH THING as whining in our world...this is tough treatment (my doc told me the only treatment that is tougher is bone marrow).  Good to hear that you've slowed down the weight loss, and that you've crossed the half way mark for rads (that was a BIG deal for me!!). 

    Part of the light headedness could be low blood pressure.....mine was very during treatment....keep that hydration going, knowing that it also plays a part in BP.  I found that I could taste the blander food best.....the Ensure is bland for sure Laughing.  Just keep plodding along, it won't be long before you've had your last chemo....and you're ringing that bell!!

    Write all you need to...we're always here listening, and ready to lift you up.

    p

  • pmj2011
    pmj2011 Member Posts: 25
    #3
    Stage IV Throat Cancer 33 Rounds Radiation and 3 Cisplatin

    Hi Steve,

     

    Hang in there its going to get worse before its gets better. I am 3 years out from treatment and feel great except for the occasional side effect here and there. Hopefully you'll get through treatment better than I did, It was very rough for me. I went from 210 to 150lbs and had the tube in as well. I hope you get through it ok and recover as well as I did. Happy New Year !   

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #4
    status good to keep going

    Steve,

    Keep hanging in there, it sounds like you are meeting the challenge(s).  Keep sipping water, every drop helps and you are correct, hydrate by PEG (if needed).   Keep adjusting your plans to deal with side effects.

    Funny things will happen with your taste.  For me, even with my taste buds “Gone Wacko” , I could always taste Crystal Light ice tea and sweet corn-on-the-cob.  Taste is a whole new ball game for me.

    This will all be over soon.

    Matt

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #5
    steve, you are always welcome

    steve, you are always welcome to come here and write!  its even ok if you whine now and then.  we all have our days.  it's part of having cancer and going thru tx.  its great that you're half way thru rads!!  that's a big deal to everyone.  for those of us who have finished, we remember hitting that halfway mark.  for those going thru tx, they look forward to seeing the halfway mark.  you can ask for anything here.  we are here to encourage each other and help all going thru tx to make it.  this is a wonderful family and we are here for you so no need to EVER apologize!  that's what family does.

    God bless you,

    dj

  • spector551
    spector551 Member Posts: 109
    #6
    Steve,

    I still pray for you nightly, Brother! Don't worry, you will make it through. There will be darker times, but you will pull through. This treatment is hard. Good news about your tumor and node! I finished rads on Christmas Eve and I still have about 1.5 node... really flat though. Dr's said they expect it to totally diminish over time. I'm relying on the Lord to make it happen! Just keep your head up and, yes, keep that fluid in you at all cost! It really is a game changer in how you feel. Use your throat for as much of your hydration as possible - gotta keep that thing working as well as possible!

     

    God bless,

    Jamie

  • Steve5
    Steve5 Member Posts: 147
    #7
    phrannie51 said:

    You sound like you're

    you're on par with many of us, and I don't hear any whining at all.....Be assured, tho.....that there is NO SUCH THING as whining in our world...this is tough treatment (my doc told me the only treatment that is tougher is bone marrow).  Good to hear that you've slowed down the weight loss, and that you've crossed the half way mark for rads (that was a BIG deal for me!!). 

    Part of the light headedness could be low blood pressure.....mine was very during treatment....keep that hydration going, knowing that it also plays a part in BP.  I found that I could taste the blander food best.....the Ensure is bland for sure Laughing.  Just keep plodding along, it won't be long before you've had your last chemo....and you're ringing that bell!!

    Write all you need to...we're always here listening, and ready to lift you up.

    p

    Thanks P

    Thanks P - it really helps to hear from you, this pick me up gives me a little something to keep going on - and I like your picture, I don't smile much these days but I just did now looking at your smile - Thanks

    All the best

    Steve

  • Steve5
    Steve5 Member Posts: 147
    #8
    pmj2011 said:

    Stage IV Throat Cancer 33 Rounds Radiation and 3 Cisplatin

    Hi Steve,

     

    Hang in there its going to get worse before its gets better. I am 3 years out from treatment and feel great except for the occasional side effect here and there. Hopefully you'll get through treatment better than I did, It was very rough for me. I went from 210 to 150lbs and had the tube in as well. I hope you get through it ok and recover as well as I did. Happy New Year !   

    thanks

    Thanks for responding today, lifted me up again, I started at 260 and could stand to lose a few pounds although everyone tells me I am a big guy and carry it okay, now 15 lbs lighter I want my muscle back - thanks for the good hope, all the best to you in the New Year

     

    Steve

  • Steve5
    Steve5 Member Posts: 147
    #9
    CivilMatt said:

    status good to keep going

    Steve,

    Keep hanging in there, it sounds like you are meeting the challenge(s).  Keep sipping water, every drop helps and you are correct, hydrate by PEG (if needed).   Keep adjusting your plans to deal with side effects.

    Funny things will happen with your taste.  For me, even with my taste buds “Gone Wacko” , I could always taste Crystal Light ice tea and sweet corn-on-the-cob.  Taste is a whole new ball game for me.

    This will all be over soon.

    Matt

    thanks Matt

    Thanks Matt I tried frozen corn tonight, no sweet corn on the cob in Dec, but it did not work, I should keep a list of things I try, at least my better half never complains about trying something new for me, what an angel, really appreciate all the replies you have sent and continue to remind myself of two things now that I think about you - one "but first" and two, I am determined to taste a hotdog again, I remember you saying somthing about eating 2 of them one time - and I really want to again

    All the best

    Steve

  • Steve5
    Steve5 Member Posts: 147
    #10
    debbiejeanne said:

    steve, you are always welcome

    steve, you are always welcome to come here and write!  its even ok if you whine now and then.  we all have our days.  it's part of having cancer and going thru tx.  its great that you're half way thru rads!!  that's a big deal to everyone.  for those of us who have finished, we remember hitting that halfway mark.  for those going thru tx, they look forward to seeing the halfway mark.  you can ask for anything here.  we are here to encourage each other and help all going thru tx to make it.  this is a wonderful family and we are here for you so no need to EVER apologize!  that's what family does.

    God bless you,

    dj

    Thanks DJ

    Thanks - it really does give me a little lift and kick and something to go on when you guys reply back,  thanks for helping me through today and giving me something to help face the next few coming up - and yes, it is hard to believe I have finished 20 treatments already, okay keeping up now better,

    God Bless and kind thoughts

    Steve

  • Steve5
    Steve5 Member Posts: 147
    #11
    spector551 said:

    Steve,

    I still pray for you nightly, Brother! Don't worry, you will make it through. There will be darker times, but you will pull through. This treatment is hard. Good news about your tumor and node! I finished rads on Christmas Eve and I still have about 1.5 node... really flat though. Dr's said they expect it to totally diminish over time. I'm relying on the Lord to make it happen! Just keep your head up and, yes, keep that fluid in you at all cost! It really is a game changer in how you feel. Use your throat for as much of your hydration as possible - gotta keep that thing working as well as possible!

     

    God bless,

    Jamie

    Hi Jamie

    Hi Jamie, thanks my good friend, for taking the time to write, I know or imaging to some degree how you are feeling and it really means something to hear from you when I know you have gone through more than I have - that is really good news to hear as well from your doc - I almost said something like, can you imagine about 6 months out, but as Matt has counselled as well as others one day at a time - all the very best my friend, a speedy and healthy recovery and long and loving life

    Steve

  • Roar
    Roar Member Posts: 269 Member
    #12
    Thanks for keeping it real

    You know- that entire post just brought me back to my darkest days on earth. I am just over a year from my last treatment- when I was 15 in I was a mess- that's when it hit that this was no cold or flu. All I can tell you is that you clearly understand where you are and have managed your expectations accordingly. I remember at 15 treatments in and looking forward to the weekend off and how it sucked to have to start over Again on Monday. I don't have to tell you to keep getting the calories and protein whatever way you can. I could not tolerate fruit or lemon at 15 in so you are doing better than I was. Make sure you take in as much water as you can on chemo days- you have to flush that stuff out ASAP. KEEP up the fight and it will be over before you know it and thanks for keeping it real. Some of the things that worked for me were scrambled eggs very loose add milk- very soggy double dipped French toast, clear chicken broth with pastina( small pasta) instant maple oatmeal made with milk and of coarse like you said ensure. If you don't have it ask for magic mouth wash it will give you a small window to swallow food- 

    happy holidays and I wish you the best recovery on earth,

    Ralph 

  • TracyLynn72
    TracyLynn72 Member Posts: 839
    #13
    Write often

    and express how you feel.  It's NOT whining.  You are a warrior and you're fighting the fight. We are always here to listen and give advice if we have any.  Hydration is so important..I had to get fluids for dehydration twice.  Keep hanging in there...I PROMISE it will be over soon and you can look back and know that you kicked some butt!  I never thought I'd make it through my treatments and they ended over 6 months ago.  Prayers will continue for you! 

  • hwt
    hwt Member Posts: 2,328 Member
    #14
    TracyLynn72 said:

    Write often

    and express how you feel.  It's NOT whining.  You are a warrior and you're fighting the fight. We are always here to listen and give advice if we have any.  Hydration is so important..I had to get fluids for dehydration twice.  Keep hanging in there...I PROMISE it will be over soon and you can look back and know that you kicked some butt!  I never thought I'd make it through my treatments and they ended over 6 months ago.  Prayers will continue for you! 

    Not necessarily true

    Steve,

    What you said about the 2 weeks post tx being the worst isn't necessarily true.  I did not experience that and hopefully, you won't either. My lip sores started to heal following tx. and other than another case of thrush, my skin turned dark and peeled but did not bereak open and did not hurt. About week 3 post, my hair between my ears at nap of neck came out but in the scheme of things that was insignificant.  I was prepared for the worst and pleasantly surprised at that time frame.

    Good luck!

    Candi

  • spector551
    spector551 Member Posts: 109
    #15
    hwt said:

    Not necessarily true

    Steve,

    What you said about the 2 weeks post tx being the worst isn't necessarily true.  I did not experience that and hopefully, you won't either. My lip sores started to heal following tx. and other than another case of thrush, my skin turned dark and peeled but did not bereak open and did not hurt. About week 3 post, my hair between my ears at nap of neck came out but in the scheme of things that was insignificant.  I was prepared for the worst and pleasantly surprised at that time frame.

    Good luck!

    Candi

    Steve

    I agree with everything Candi just said as I am finding it to be true already. I mean, I don't want to throw a party or anything but I'm not stuffing myself in the dumpster either. I find already that I am recovering... my doc has a lot to do with that getting me on the right medications.

    Also, take a look at ordering some SPIZ. It has a lot of good supplements in it, as well as L-Glutamine.

    God bless,

    Jamie

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #16
    Ground Hogs Day...

    Just like the movie....

    Same thing, day after day, after day, after day......

    This is the period that I like to refer as GroundHogs Days.., it get boring, old and definitely repetitive...

    Keep your head straight, stay positive and press on....

    When you're going through Hell, keep on going...

    In  a few months, this will be something to look back on and realize you made it... A year from now, you'll be remembering all of this battle and wonder how you made it through... Five years from now, it'll still be in your memory, but you'll finally realize you are a survivor....

    Live Long...,

    John

  • Mikemetz
    Mikemetz Member Posts: 465 Member
    #17
    The dog days of treatment

    As others have said, you are in the middle of the battle and sometimes it seems like it will never end.  But it will, and you will make it through to life as a cancer survivor.  Everyone copes with it differently--my strategy was to just give in to the fact that I was being treated for cancer and that my life would suck for several weeks.  I went into a "zone" where time didn't matter, the outside world didn't matter--nothing mattered except what I needed to do every day to make it through the treatments.  I also did not count the days until treatments would be over--somehow I thought that would make it go slower.  One day I woke up and didn't have to go the hospital for rads or chemo, and "Groundhog Day" was gone!  Sometimes "mental toughness" means just being calm, focused, and accepting of what you are going through--no drama, no rah-rah stuff, etc. 

    Find your own strategy for getting through this, and stay with it.  It will be over before you know it.

    Mike

     

  • Jeff2159
    Jeff2159 Member Posts: 108
    #18
    I was in your shoes a year ago

    and finished my treatments at the end of January. As mentioned by others, stay hydrated as best as possible. I remember fainting/ my knees just buckling 3-4 times and once going to the restroom and hitting my eye, nose and just missing my teeth. Somehow I only ended up with a sore and bloody nose and a small cut on eyelid. My down fall was the chemo treatments, they were tough for the following 2-3 days and yes I too had it rough a month after all treatments but there is a rainbow at the end and it does get better-eventually. Sounds as though you have no feeding tube-- lucky. Costco has a protein shake called premier protein and it has 30g of protein, 160 cal in 11oz. and the taste is ok

    good luck

    Jeff

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    #19
    I remember....

    Like Roar, this brings back some very unpleasant memories. I was Dx'd Tx (unknown primary) N2b MO Stage IV. 6 weeks rads, 6 Cisplatin infusions. It was at 3 weeks , where you're at now, that I hit the wall and it was downhill from there for me. I made it through treatment without a PEG but had one put in literally hours after my last rad treatment. I was fortunte that I never lost my taste although some things were a bit "off" Despite that, it was some time before my mouth and throat healed enough to eat many things. 

    Recovery has been challenging but all in all doing Ok. You're a Warrior now. It's a hell of a battle and you have to do whatever you have to do to survive. One foot in front of the other and march on no matter what. You'll get there despite what you body and mind will tell you. Just keep in mind when things get rough that it takes about a year to get to where you come to the "new normal". 

    Positive thoughts and prayers on your journey. 

    "T"

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    #20
    Opps

    Double click ;)

  • j4mie
    j4mie Member Posts: 218
    #21
    Hi Steve...

    I haven't been on here in a few days, so just noticed your post. So, here you go...

    HANG IN THERE!!!! It does get better....

    Pat finished on Nov. 20th. He has made huge strides in just a few short weeks. It seems that each day we have a new milestone that he is meeting as far as taste, saliva, nausea, and energy goes. 

    You've got this Cool Just hang in there and get the hard part done, and then look forward to the healing that is to come...

    Jamie

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