SETBACKS

boardwalkgirl
boardwalkgirl Member Posts: 269
in Head and Neck Cancer #1
I guess I am just having a couple of down days. Origally should have been finishing radiation on the 31st, now won't be done until at least August 3rd if my neck heals enough to start back up on Monday, I don't think it looks hopeful. I have thrush and that doesn't seem to be getting better, been on Nystatin since Thursday. The thick mucous is back,everything I taste tastes salty. I need to snap out of this, I have really been so positive and I know I am almost there. Done with chemo and really have been lucky, I think, as far as how I have done so far. It just seems like everything hit all at once and I am just so ready to be done. To taste something good again.....Sorry, I just didn't know where else to vent a little. My poor husband is doing anything he can to make me feel better. No replies are necessary, just needed a sounding board.

Comments

  • ToBeGolden
    ToBeGolden Member Posts: 695
    #2
    We've All Been There
    Of course, no one needs to reply. Of course, you know we've all been there. Of course, you know it will end. You will move onto a new you, a post-treatment you. But it may just help to have someone tell you the obvious.

    I do remember the days when I thought radiation would never end. But the treatment did come to an end and I did heal. Rick.
  • Hondo
    Hondo Member Posts: 6,636 Member
    #3
    Hi walkgirl

    You sound about normal because as we all get close to the finish line we all just want this crap to be over with. Try and do what I did, I kept telling myself I can make this last week standing on my head, and before I new it the week was over and I was finished. I pray that your neck will heal enough to continue treatment on Monday and vent anytime you need to.

    Hondo
  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #4
    feel better
    boardwalkgirl,

    I am sorry to hear you are feeling down and that you neck is hurting. I guess they are going to make you fight for your last few treatments. Do as Hondo said and try standing on your head. Do you do it in the lobby or wait until just before mask time. I think either time will let them know you mean business and let’s finish these treatments.

    Whether they finish on Tuesday or Friday shouldn’t matter too much, being finished is the important part, what ever day it is. You should be smiling, completion is really in sight.

    I can’t help you with the mucus or salty taste, but I can tell you I had a glass of sweet tea an hour ago and it almost brought a tear to my eye it tasted so good (I rated the taste a 7 on the Matt Taste Scale and nothing has been above a 2 yet). At 18 weeks post it really is getting a little better. I hope I don’t jinx it by talking about it.

    Don’t worry about bending my ear with your troubles, that’s why I am on the weekend shift. If you really need to talk I can give you Phrannie or John’s phone numbers, they are always up for a little chit chat.

    Feel better and finish up strong, I am rooting for you.

    Best,

    Matt
  • phrannie51
    phrannie51 Member Posts: 4,716
    #5
    I'm sorry you're having to wait to finish rads
    I remember I got stuck on day 10 for 3 days and weekend trying to get to the single digits...and it sucked, cuz I wanted to keep the show on the road. However, if that had not happened, I'm sure the burns on my neck would have stopped treatment for several days...just saying, gotta look at some things as a blessing (took me a while to do that with my delay, however :)).

    If the Nystatin doesn't work on the thrush, ask for Diflucan...it gets thrush from the inside out rather than as a topical...it worked well for me.

    Take heart, honey....we all have spent time where you're at, and that's why we're all here supporting one another....today you need it, tomorrow Matt may need it, or me....the treatments last for months...nobody fully escapes getting sick and tired of being sick and tired...

    You hang in there, tomorrow will be a better day.

    p
  • Pam M
    Pam M Member Posts: 2,196
    #6
    Hope It's a Short Wait
    I recall one of my technicians telling me "Oh it's not a problem - we'll just tack a treatment day onto the end". I felt very petty, but all I could think was "No! You don't understand. It's March 15. I've been looking forward to, longing for, desperate for, March 15. Not the 16th." I put on my big girl panties and bit my lip.

    Hope you're doing well enough to finish treatment soon.
  • boardwalkgirl
    boardwalkgirl Member Posts: 269
    #7
    I guess I really did want replies
    I woke up this morning feeling a little better and thinking I am going to snap out of this, Thanks for the words of encouragement. Mouth still doesn't look better so I think I will ask about Diflucan tomorrow. I am still thinking neck is not going to be ready tomorrow but we will see what they say, don't want to make it worse. I feel a little stronger today and it is amazing how a little venting makes you feel recharged. Friends brought me some soup last night and it actually had some flavor. And the sweet tea sounds awesome, I can't wait. Right now I am drinking unsweetened because I can't taste the sugar anyway. Lol. Thanks again for the support, this week is going to be better. And I will be doing my happy dance soon!!
  • DrMary
    DrMary Member Posts: 531 Member
    #8
    boardwalkgirl said:

    I guess I really did want replies
    I woke up this morning feeling a little better and thinking I am going to snap out of this, Thanks for the words of encouragement. Mouth still doesn't look better so I think I will ask about Diflucan tomorrow. I am still thinking neck is not going to be ready tomorrow but we will see what they say, don't want to make it worse. I feel a little stronger today and it is amazing how a little venting makes you feel recharged. Friends brought me some soup last night and it actually had some flavor. And the sweet tea sounds awesome, I can't wait. Right now I am drinking unsweetened because I can't taste the sugar anyway. Lol. Thanks again for the support, this week is going to be better. And I will be doing my happy dance soon!!

    Glad you're better
    Doug had days like that and so did I (he had the cancer, I'm just a wimp). Fortunately, they were never on the same day, so we could pull each other through.

    About Diflucan - consider raising the topic of having your husband take it also. A spouse is easily a carrier for yeast and can reinfect you, even if he is showing no side effects. We used this strategy both when Doug had thrush and when I had vaginal yeast infections. Some doctors won't go for it - mine was the one who suggested it. Either way, you will find taking diflucan much more effective than Nystatin.

    Chin up - not much more!
  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #9
    boardwalkgirl said:

    I guess I really did want replies
    I woke up this morning feeling a little better and thinking I am going to snap out of this, Thanks for the words of encouragement. Mouth still doesn't look better so I think I will ask about Diflucan tomorrow. I am still thinking neck is not going to be ready tomorrow but we will see what they say, don't want to make it worse. I feel a little stronger today and it is amazing how a little venting makes you feel recharged. Friends brought me some soup last night and it actually had some flavor. And the sweet tea sounds awesome, I can't wait. Right now I am drinking unsweetened because I can't taste the sugar anyway. Lol. Thanks again for the support, this week is going to be better. And I will be doing my happy dance soon!!

    sweet answer
    Boardwalkgirl,

    It didn’t dawn on me until after I wrote to you about the sweet tea being so good, but it was because it was made with “Sweet’n Low” which is 300x sweeter than sugar. That was enough to poke my taste buds in the “sweet spot”. Now I am thinking about sprinkling the “Sweet’n Low” on other things to jazz them up. I had to drink another glass of sweet tea last night to confirm and it was great, I think I have artificial taste buds. Works for me and not complaining.

    Best,

    Matt
  • boardwalkgirl
    boardwalkgirl Member Posts: 269
    #10
    CivilMatt said:

    sweet answer
    Boardwalkgirl,

    It didn’t dawn on me until after I wrote to you about the sweet tea being so good, but it was because it was made with “Sweet’n Low” which is 300x sweeter than sugar. That was enough to poke my taste buds in the “sweet spot”. Now I am thinking about sprinkling the “Sweet’n Low” on other things to jazz them up. I had to drink another glass of sweet tea last night to confirm and it was great, I think I have artificial taste buds. Works for me and not complaining.

    Best,

    Matt

    thanks
    I may have to give that Sweet and Low a try. I have always been a lover of all sweets and right now I can't think of the last sweet thing I tasted. Glad you are enjoying it! You made me laugh! I would take artifical taste buds right now, lol.
  • hwt
    hwt Member Posts: 2,328 Member
    #11
    boardwalkgirl said:

    thanks
    I may have to give that Sweet and Low a try. I have always been a lover of all sweets and right now I can't think of the last sweet thing I tasted. Glad you are enjoying it! You made me laugh! I would take artifical taste buds right now, lol.

    Sorry
    we all know what the rough times are like. Glad you are in better spirits now. Don't lose sight of the end of the road...you are almost there! Matt rated something a "7"...hope for all of us!
  • boardwalkgirl
    boardwalkgirl Member Posts: 269
    #12
    praise the Lord
    Went in this morning to see if I could start radiation again and PRAISE THE LORD I could. 4 more to go!!! I am feeling my happy dance coming on. Thanks for all the support over the weekend. It was a tough one for me but now I feel like I am back on track!!
  • ditto1
    ditto1 Member Posts: 660
    #13
    boardwalkgirl said:

    praise the Lord
    Went in this morning to see if I could start radiation again and PRAISE THE LORD I could. 4 more to go!!! I am feeling my happy dance coming on. Thanks for all the support over the weekend. It was a tough one for me but now I feel like I am back on track!!

    You go
    get the last 4 and knock them out. You did just as I did, it seems Thrush was a bigger issue for me than the Cancer Treatment. I remember my last rant Im tired of this junk, I had Thrush and it was just frustrating to say the least. If fighting the cancer with RADS, Chemo, sore mouth without thrush etc etc was not enough to deal with. Yes we want to break thru this long tunnel and once we see the light at the end of the tunnel we do not want anything to get in the way. So happy you vented we all have, thrilled your back on track and 3 after today, wow. Im finally down to single digits 9 and 3 Erbitux, still seems a hundred miles away but it only means I have traveled a 1000 miles so far and still hanging in there. So see ya on the other side. Funny for the 1st time yesterday I watched the Food Channel all Day and played I remember what that tasted like. Besides my big prayers a little down on the list is Please God let me taste and enjoy food again.
  • boardwalkgirl
    boardwalkgirl Member Posts: 269
    #14
    ditto1 said:

    You go
    get the last 4 and knock them out. You did just as I did, it seems Thrush was a bigger issue for me than the Cancer Treatment. I remember my last rant Im tired of this junk, I had Thrush and it was just frustrating to say the least. If fighting the cancer with RADS, Chemo, sore mouth without thrush etc etc was not enough to deal with. Yes we want to break thru this long tunnel and once we see the light at the end of the tunnel we do not want anything to get in the way. So happy you vented we all have, thrilled your back on track and 3 after today, wow. Im finally down to single digits 9 and 3 Erbitux, still seems a hundred miles away but it only means I have traveled a 1000 miles so far and still hanging in there. So see ya on the other side. Funny for the 1st time yesterday I watched the Food Channel all Day and played I remember what that tasted like. Besides my big prayers a little down on the list is Please God let me taste and enjoy food again.

    That is so funny about the
    That is so funny about the food channel. I have been watching it for weeks and saving recipes that sound good in a recipe box on the Food Channel website. My husband says that has been what kept me going,LOl. I told my husband we are going to eat so well when I can taste again, afraid I will gain all of my weight back. Don't really need that. I will be rooting for you too, I remember the single digit dance.
  • blackswampboy
    blackswampboy Member Posts: 341
    #15
    ditto1 said:

    You go
    get the last 4 and knock them out. You did just as I did, it seems Thrush was a bigger issue for me than the Cancer Treatment. I remember my last rant Im tired of this junk, I had Thrush and it was just frustrating to say the least. If fighting the cancer with RADS, Chemo, sore mouth without thrush etc etc was not enough to deal with. Yes we want to break thru this long tunnel and once we see the light at the end of the tunnel we do not want anything to get in the way. So happy you vented we all have, thrilled your back on track and 3 after today, wow. Im finally down to single digits 9 and 3 Erbitux, still seems a hundred miles away but it only means I have traveled a 1000 miles so far and still hanging in there. So see ya on the other side. Funny for the 1st time yesterday I watched the Food Channel all Day and played I remember what that tasted like. Besides my big prayers a little down on the list is Please God let me taste and enjoy food again.

    food channel
    funny, I've been watching the food channel too. never watched it before, and I don't really cook.
    no, it's more like a space alien watching humans in their feeding rituals. I have great curiosity in this strange human behavior.
    but I can dimly remember what eating was like. getting all excited by wicked hot curries and squid in tomato sauce... now it's all just a fuzzy memory of a previous life.
    back to my cans!
  • hwt
    hwt Member Posts: 2,328 Member
    #16
    blackswampboy said:

    food channel
    funny, I've been watching the food channel too. never watched it before, and I don't really cook.
    no, it's more like a space alien watching humans in their feeding rituals. I have great curiosity in this strange human behavior.
    but I can dimly remember what eating was like. getting all excited by wicked hot curries and squid in tomato sauce... now it's all just a fuzzy memory of a previous life.
    back to my cans!

    Too many of us
    watching food network...I was wondering the other day if it makes us salivate and helps the dry mouth? Something keeps drawing us there.
  • yensid683
    yensid683 Member Posts: 349
    #17
    ditto1 said:

    You go
    get the last 4 and knock them out. You did just as I did, it seems Thrush was a bigger issue for me than the Cancer Treatment. I remember my last rant Im tired of this junk, I had Thrush and it was just frustrating to say the least. If fighting the cancer with RADS, Chemo, sore mouth without thrush etc etc was not enough to deal with. Yes we want to break thru this long tunnel and once we see the light at the end of the tunnel we do not want anything to get in the way. So happy you vented we all have, thrilled your back on track and 3 after today, wow. Im finally down to single digits 9 and 3 Erbitux, still seems a hundred miles away but it only means I have traveled a 1000 miles so far and still hanging in there. So see ya on the other side. Funny for the 1st time yesterday I watched the Food Channel all Day and played I remember what that tasted like. Besides my big prayers a little down on the list is Please God let me taste and enjoy food again.

    Food Channel - ooo EATS
    I've found myself watching the food channel as well, especially Diners Drive Ins and Dives and I too see the wonderful concoctions and wonder if I too will be able to bite into a monster cheeseburger with bacon and barbecue sauce and experience the toasted roll, the crisp lettuce, the grilled beef and the tang of the sauce. Of all of my experiences, I think the worst is the loss of my sense of taste (though it is coming back) and the lack of saliva that makes it almost impossible to eat anything yet. I'm just a few weeks post treatments so it is my opinion that there is a lot more healing to do before I should let myself feel any discouragement.

    I am going to eat again and when I do I am going to have a grilling FEAST!

    Thanks Guy F!

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