Ups and Downs

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Anonymous7/6/2023
Anonymous7/6/2023 Member Posts: 176
in Head and Neck Cancer #1

I got better quite quickly after my surgery, but radiotherapy nearly killed me. But I improved quite a bit. the last few weeks my lymphedema has come back with a vengeance. The worst is inside my mouth. I am doing my drainage massage religiously and I saw the lymphedema nurse again. It has buggered up my swallowing again. I was experimenting with slightly thicker purée but now it's back to liquids. And now when I swallow half of it goes up my nose. That's a new one. GREAT. 

This illness never ceases to amaze me, full of nasty surprises. I have had to learn to live with a tyranny of daily disappointments. 

Please, tell me it gets better. 

Surgery was last Christmas. Radio was Feb/March. 

Comments

  • Duggie88
    Duggie88 Member Posts: 760 Member
    #2
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    Estelle

    It does get better. You just happen to be one where it's going to take its time. My time frame was the same as yours (surgery and radiation) and I may have had a bit more luck on my side. I hope things better at a little faster pace. Hang in there.

    Cancer sucks and kicking some cancer butt is challenging.

          Jeff

  • Anonymous7/6/2023
    Anonymous7/6/2023 Member Posts: 176
    #3
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    Thanks mate
    I don't mean to

    Thanks mate

    I don't mean to moan, but sometimes I think we all need to let off a little steam. This hot weather is definitely not helping. Here in England we're used to being slightly chilly and soggy... it's now about 30 degrees and to be honest, it's something else for us whiney old Brits to moan about Wink

    I had a look at your pofile, I hope you don't mind. You say "life is good" - that's encouraging. It means life can be good again... I just can't see it yet, but it will eventually. xx

  • Hondo
    Hondo Member Posts: 6,636 Member
    #4
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    Hi Estelle

    My brother had the same problem, after all his treatment his lymphedema came back worse. His doctor started retreating and doing all kinds of thing, we sent him to a place up north I can’t remember the name of the place and they found his problem was not the lymphedema but that he had a very bad Staff infection and needed to get on antibiotic. Just something you might want to check into.

    All the best to you and Welcome to CSN H&N

    Hondo

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #5
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    need more ups

    Estelle,

    It does get better much better!

    I lived mainly on smoothies for 7 months, but I can eat with the strongest H&N member now (given enough water).  I  can now sneeze a carrot out my nose, I could not do that before and I don’t use said talent often, but I can.

    The new normal is sometimes difficult and embarrassing, but it is easier to work with  the changes than fighting them.  At 2y4m I am still finding improvements to taste and saliva.

    I use to love Clam Chowder and now not so much.

    The clams are smiling.

    Matt

  • Goyca
    Goyca Member Posts: 220
    #6
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    Stay strong Estelle..it

    Stay strong Estelle..it should get better. Stay strong :)

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #7
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    Hi Estelle

    Some of us see improvement literally years after radiation.  Don't panic.  Just do what is necessary to the day.

     

     

    Pat

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #8
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    Estelle, I'm 4.5 yrs out from

    Estelle, I'm 4.5 yrs out from last rad and i've had my food come thru my nose a couple times.  the last time was about a year ago.  it has not happened since then.  so, i don't think that will be a big problem.  about the lymphedema, i am 2.5 yrs out from surgery and i still have it bad under my chin.  my head looks really long b/c the lymphdema is so bad.  i've used a couple different wraps but they didn't help.  others have used them tho and had massages and they helped them.  so that can go either way.  but the bottom line is, it will get better. you just have to be patient.  recovering is a long and slow process but you will get there.  stay positive.  you are only out of tx a short period!  you still have a  lot of healing time ahead of you.

    God bless you,

    dj

  • wmc
    wmc Member Posts: 1,804
    #9
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    Estelle_H said:

    Thanks mate
    I don't mean to

    Thanks mate

    I don't mean to moan, but sometimes I think we all need to let off a little steam. This hot weather is definitely not helping. Here in England we're used to being slightly chilly and soggy... it's now about 30 degrees and to be honest, it's something else for us whiney old Brits to moan about Wink

    I had a look at your pofile, I hope you don't mind. You say "life is good" - that's encouraging. It means life can be good again... I just can't see it yet, but it will eventually. xx

    I do agree

    Sometimes you just need to vent and other times you just share good news or what you learned. It's always good to be able to with people who understand and have been there. I never had Rad or chemo. Just surgery to remove the tumor and a few lymph glands [86] oh and a laryngectony. The funny thing is there are times when all seams like it did before the surgery, and I feel like it was when I could breath through my nose instead of my neck. It does get better with time. Sometimes it is a slow process, but it will. I'm doing better all the time and I found out how kind people can trully be. Be strong, get attitude, and like who you are and you can deal with anything that comes your way. Oh, sorry for your temp. It's between 36 to 40 all summer in central California.

    Bill

  • Guzzle
    Guzzle Member Posts: 710
    #10
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    debbiejeanne said:

    Estelle, I'm 4.5 yrs out from

    Estelle, I'm 4.5 yrs out from last rad and i've had my food come thru my nose a couple times.  the last time was about a year ago.  it has not happened since then.  so, i don't think that will be a big problem.  about the lymphedema, i am 2.5 yrs out from surgery and i still have it bad under my chin.  my head looks really long b/c the lymphdema is so bad.  i've used a couple different wraps but they didn't help.  others have used them tho and had massages and they helped them.  so that can go either way.  but the bottom line is, it will get better. you just have to be patient.  recovering is a long and slow process but you will get there.  stay positive.  you are only out of tx a short period!  you still have a  lot of healing time ahead of you.

    God bless you,

    dj

    Scouseland

    Hi Estelle. I try not to moan too much but not a true Brit. From sovereign state of scouseland. Some great people here - it does improve so stick with it mate. Regards. Gary

  • Guzzle
    Guzzle Member Posts: 710
    #11
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    Guzzle said:

    Scouseland

    Hi Estelle. I try not to moan too much but not a true Brit. From sovereign state of scouseland. Some great people here - it does improve so stick with it mate. Regards. Gary

    Forgot to say

    couple of good blogs on wordpress that may lift your spirits. Theo the radioactive man (Theo Pywowarczuk) and Gammaraygary (not me,). Both Brits who would welcome any new visitors. Treat a very serious subject with humour. Cheers, G

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