Bunnymom Update Finished Treatment in Recovery

Bunnymom
Bunnymom Member Posts: 212 Member
in Head and Neck Cancer #1

I haven't posted for months. I finally finished treatment almost three weeks ago. I'm in recovery now. 

My treatment was five days inpatient, nine days home for seven rounds so treatment actually lasted about 14 weeks. One time per day radiation (35 rounds) with 5 FU and Hydrea. 

I was very focused on the treatment during the entire time. It seems that it took every ounce of energy and focus to get through it. I'm so glad to be finished. But during the entire treatment, I never thought about recovery or what that would be like. 

So here I am three weeks into recovery. I managed toget through treatment without a feeding tube so I try to concentrate on eating the best I can and staying hydrated. im getting better and notice that I can eat and swallow much better. I still have some mouth sores on the side of my tongue and throat but I'm able to eat many foods I couldn't before while I was in treatment. I noticed the other day that my siliva is less than before. I have no idea if this will come back. My tastebuds are also very different. I understand this will come back. Does anyone know how long this will take?

im not sure what recovery looks like or what to expect. I could use some guidance with this. the side of my neck where I had the radiation, is tight. I feel mouth pain on that side as well. 

I have my first scan one month post treatment and that is on October 3rd. I then meet with Onc and rad doctors on October 6th. I can't say that I'm not scared. Logic tells me that after just going through treatment it would be difficult to imagine a bad scan especially since it's so soon. 

Can someone please lend some support? Like I said, i was very focused on going through treatment, staying strong, hydrated, eating just being present and making my way through it. I wasn't very focused on post treatment and recovery. How long does it take to get back to some semblance of normalcy. I just want my life back. I'm feeling anxiety and some depression but am still trying to keep this in check with positive thoughts. Any support you could offer would be graciously appreciated. 

Thank you. 

Bunnymom

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #2
    ring that bell

    Bunnymom,

    Congratulations on finishing treatments!  Just send me your address and I will be right over to cheer you on.

    Your “new normal” may look the same, but it may be different for a while.  You are already light years ahead of where I was at you stage.  For many the taste and saliva are just waiting to wake-up.  The H&N clock does tick by slowly.  Try everything (food) and be ready for some happy little surprises.

    Matt

  • wmc
    wmc Member Posts: 1,804
    #3
    congratulations and RING THE BELL........

    Ring the bell and it sounds like you are doing very well and healing faster. It's a "New Normal" and some things will always be differant, give it time.

    Bill

  • Guzzle
    Guzzle Member Posts: 710
    #4
    wmc said:

    congratulations and RING THE BELL........

    Ring the bell and it sounds like you are doing very well and healing faster. It's a "New Normal" and some things will always be differant, give it time.

    Bill

    no tube

    Tough bunny momma. Well done! Focus on getting better - do something to replace treatment regime.

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #5
    congratulations on finishing

    congratulations on finishing tx!!  doing a happy dance for you!  you seem to be doing ok.  the saliva will take time but it should come back, mine came back 100%. the tastebuds come back but may be a little different.  i can't eat some chocolate, peanut butter, drink a beer, eat candy bars as this stuff just doesn't taste right.  but there is a LOT i can eat and i'm thankful for that.  you will get to that point but it will take time and you will need to be patient.  judge your recovery in months, not days or weeks.  your body has been thru a lot and will now need time to heal.  as for depression, that is also normal.  several here have gone thru it and some of us now take meds to help us keep it at bay.  talk to your doc about it.  having a scan 1 month from tx is unusual.  i've always heard they can show a lot of FASLE positives being done so early as the rads are still lingering in the body.  it will be interesting to see what it shows.  i know your nerves are playing havoc with you right now about that but please try to keep your mind busy so you have less time to worry.  you are thru tx and that is something to celebrate.  be happy in that and do something for yourself.  try to get back to living now, your time is yours again!

    God bless you,

    dj

  • hwt
    hwt Member Posts: 2,328 Member
    #6
    debbiejeanne said:

    congratulations on finishing

    congratulations on finishing tx!!  doing a happy dance for you!  you seem to be doing ok.  the saliva will take time but it should come back, mine came back 100%. the tastebuds come back but may be a little different.  i can't eat some chocolate, peanut butter, drink a beer, eat candy bars as this stuff just doesn't taste right.  but there is a LOT i can eat and i'm thankful for that.  you will get to that point but it will take time and you will need to be patient.  judge your recovery in months, not days or weeks.  your body has been thru a lot and will now need time to heal.  as for depression, that is also normal.  several here have gone thru it and some of us now take meds to help us keep it at bay.  talk to your doc about it.  having a scan 1 month from tx is unusual.  i've always heard they can show a lot of FASLE positives being done so early as the rads are still lingering in the body.  it will be interesting to see what it shows.  i know your nerves are playing havoc with you right now about that but please try to keep your mind busy so you have less time to worry.  you are thru tx and that is something to celebrate.  be happy in that and do something for yourself.  try to get back to living now, your time is yours again!

    God bless you,

    dj

    Congrats

    Getting that tx behind you is a huge hurdle, hopefully that was the biggest hurdle you will encounter. 

  • yensid683
    yensid683 Member Posts: 349
    #7
    Taste and saliva

    comes back, but very slowly for me.

    I had one round of induction chemo and then 35 rads with a weekly dose of Erbitux.  I finished rads on July 5, 2012 and it was about 4 weeks before I could detect taste, and about 10 weeks before saliva started to recover enough to eat regular food. 

    Saliva never did come back 100 percent, but there are foods that I can eat without having a sip or two of water.  I can eat almost anything as long as I have something liquid close at hand or something that has a high moisture content (pasta, veggies soups, etc.) but there are other items that surprisingly work.  Potato chips for one, but they have to be regular chips, not Pringles.  Disappointing but go figure...

    The biggest challenge for me in those 10 weeks was developing a balance in terms of how much water to how much food.  I found it a pain in the (expletive deleted) but now it is second nature.

    Taste came almost all the way back, anything sour is very difficult to take, but that is related to the lower saliva level.

    Take heart, it does get better, congratulations on completing treatments. 

    Here's hoping you get it all back!

  • Bunnymom
    Bunnymom Member Posts: 212 Member
    #8
    CivilMatt said:

    ring that bell

    Bunnymom,

    Congratulations on finishing treatments!  Just send me your address and I will be right over to cheer you on.

    Your “new normal” may look the same, but it may be different for a while.  You are already light years ahead of where I was at you stage.  For many the taste and saliva are just waiting to wake-up.  The H&N clock does tick by slowly.  Try everything (food) and be ready for some happy little surprises.

    Matt

    Thank you

    Matt. Good advice

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