Such a busy time....

phrannie51
phrannie51 Member Posts: 4,716
edited April 2012 in Head and Neck Cancer #1
but things are coming together it appears. Monday/mammogram...Tues meeting with the surgeon to put in my port and the Gastreo____(I can't spell it)who will do the tube. Today a MRI for my brain and cervical...tomorrow placing the port. The oncologist called and said they will be starting chemo and rads on Monday the 16th (yikes)...the tube will be put in on Weds. the 18th.

So I guess I'm getting very close to embarking on this voyage. For as eager as I am to get this going, I thought maybe they'd delay it a week because the tube isn't going in until Weds. No such luck :)...

Oh!! and I got to meet Staceya on Monday, too...we had a cup of coffee and talked...I am so glad I met her on here!!

p

PS..I talked to a physician who lives here who is a throat cancer survivor. He said there are exercises for the jaw, tongue, neck that I should do...nobody I've talked to so far has mentioned them. Is there a internet site or anything that says what I should be doing, or should I just talk to the oncologist about it??

Comments

  • artheri
    artheri Member Posts: 14
    #2
    exercises
    Hi,

    Oh, you should rather look at it to be luck that you're about to get going and not wait another week, the sooner the better :)

    Talk to your doctors about exercises, and they should be able to help you. I got some basic exercises from my dentist and his assistants for my jaw and tongue, and some funky exercises from my speech therapist for my neck/swallowing muscles.

    For jaw, it was basically making sure to open my mouth as wide as possible on a regular basis, and for the tongue it was moving it around and flexing it in different directions. I've been following up the tongue a lot, but I wish I did more of the "open wide" stuff, cause I can really feel the muscles being a lot tighter now than before, and I'm not even close to be able to open it as wide as I used to right now.

    I've really slacked on the swallowing exercises, but I don't feel it's had any real impact as I've got no problems swallowing. One of the ladies in my "group" had enormous problems swallowing at the end of her radiation, and she never mentioned anything about doing exercises. I suspect she would probably have benefited a lot from them. She didn't have surgery done to her tongue though, so she probably didn't get assigned a speech therapist. She was 3-4 weeks ahead of me in her treatment, so it was before I started going to my therapist... if not, I'd have advised her to get one assigned. I thought he would only help me with speaking. As mentioned, the exercises are really funky. They're hard to learn correctly without face to face guidance, or else I'd try to post them here for you.

    Also, I'm not sure if this is standard everywhere, but the dentist assistants at my hospital was standing by every day for people getting radiation to the mouth area. I went there every single day after radiation, and they cleaned my mouth/teeth and applied some oils and stuff (only took like 5-10 minutes). The 2-3 hours after that was the best hours of my day throughout radiation. You should check if they've got a similar program at your hospital, unless you've already been informed that they do. If so, I can't advise you enough to go there every day after radiation.

    Good luck with your treatment. If the chemo is kind to you, you're hopefully still many weeks away from noticing much side effects :) I only got nauseous from the chemo, but the nausea meds took care of that, and I noticed no side effects from the radiation before around the 13-14th treatment. I was expecting at least a reduced level of energy throughout the treatment, but that only happened to me during a short period where I struggled to get enough food in me late in the treatment.
  • phrannie51
    phrannie51 Member Posts: 4,716
    #3
    artheri said:

    exercises
    Hi,

    Oh, you should rather look at it to be luck that you're about to get going and not wait another week, the sooner the better :)

    Talk to your doctors about exercises, and they should be able to help you. I got some basic exercises from my dentist and his assistants for my jaw and tongue, and some funky exercises from my speech therapist for my neck/swallowing muscles.

    For jaw, it was basically making sure to open my mouth as wide as possible on a regular basis, and for the tongue it was moving it around and flexing it in different directions. I've been following up the tongue a lot, but I wish I did more of the "open wide" stuff, cause I can really feel the muscles being a lot tighter now than before, and I'm not even close to be able to open it as wide as I used to right now.

    I've really slacked on the swallowing exercises, but I don't feel it's had any real impact as I've got no problems swallowing. One of the ladies in my "group" had enormous problems swallowing at the end of her radiation, and she never mentioned anything about doing exercises. I suspect she would probably have benefited a lot from them. She didn't have surgery done to her tongue though, so she probably didn't get assigned a speech therapist. She was 3-4 weeks ahead of me in her treatment, so it was before I started going to my therapist... if not, I'd have advised her to get one assigned. I thought he would only help me with speaking. As mentioned, the exercises are really funky. They're hard to learn correctly without face to face guidance, or else I'd try to post them here for you.

    Also, I'm not sure if this is standard everywhere, but the dentist assistants at my hospital was standing by every day for people getting radiation to the mouth area. I went there every single day after radiation, and they cleaned my mouth/teeth and applied some oils and stuff (only took like 5-10 minutes). The 2-3 hours after that was the best hours of my day throughout radiation. You should check if they've got a similar program at your hospital, unless you've already been informed that they do. If so, I can't advise you enough to go there every day after radiation.

    Good luck with your treatment. If the chemo is kind to you, you're hopefully still many weeks away from noticing much side effects :) I only got nauseous from the chemo, but the nausea meds took care of that, and I noticed no side effects from the radiation before around the 13-14th treatment. I was expecting at least a reduced level of energy throughout the treatment, but that only happened to me during a short period where I struggled to get enough food in me late in the treatment.

    I know getting started
    "the sooner the better" is the best way to go, and two weeks ago I had both feet on that side of the line...now that it's so close, however...my inner child is screaming "the indians are coming, the indians are coming....hide in the cellar!!! (going back to my childhood and all the John Wayne movies I saw at the drive-in theater with my parents..LOL).

    There are no dental people in the sidelines here, that's all up to me as the patient...I'll start asking at all my stops about the exercises, and use the internet. I haven't been to the speech therapist yet (she's the swallowing coach), but she may very well be the jaw and tongue coach, also. Have to wait until my insurance approves it before I can see her.

    Thanks for the luck...I'm tucking it into my pocket...:)

    p
  • ratface
    ratface Member Posts: 1,337 Member
    #4
    phrannie51 said:

    I know getting started
    "the sooner the better" is the best way to go, and two weeks ago I had both feet on that side of the line...now that it's so close, however...my inner child is screaming "the indians are coming, the indians are coming....hide in the cellar!!! (going back to my childhood and all the John Wayne movies I saw at the drive-in theater with my parents..LOL).

    There are no dental people in the sidelines here, that's all up to me as the patient...I'll start asking at all my stops about the exercises, and use the internet. I haven't been to the speech therapist yet (she's the swallowing coach), but she may very well be the jaw and tongue coach, also. Have to wait until my insurance approves it before I can see her.

    Thanks for the luck...I'm tucking it into my pocket...:)

    p

    Your past the Indians
    and heading toward the Calvary as I see it. There is no getting your head around the whirlwind of stuff to get done. Just go with it and don't try.
  • osmotar
    osmotar Member Posts: 1,006
    #5
    phrannie51 said:

    I know getting started
    "the sooner the better" is the best way to go, and two weeks ago I had both feet on that side of the line...now that it's so close, however...my inner child is screaming "the indians are coming, the indians are coming....hide in the cellar!!! (going back to my childhood and all the John Wayne movies I saw at the drive-in theater with my parents..LOL).

    There are no dental people in the sidelines here, that's all up to me as the patient...I'll start asking at all my stops about the exercises, and use the internet. I haven't been to the speech therapist yet (she's the swallowing coach), but she may very well be the jaw and tongue coach, also. Have to wait until my insurance approves it before I can see her.

    Thanks for the luck...I'm tucking it into my pocket...:)

    p

    Think of
    Think of your friends here as pioneers and we are circling our wagons around you on this journey. Sending you blessing and light from the Arizona desert.

    Linda
  • artheri
    artheri Member Posts: 14
    #6
    phrannie51 said:

    I know getting started
    "the sooner the better" is the best way to go, and two weeks ago I had both feet on that side of the line...now that it's so close, however...my inner child is screaming "the indians are coming, the indians are coming....hide in the cellar!!! (going back to my childhood and all the John Wayne movies I saw at the drive-in theater with my parents..LOL).

    There are no dental people in the sidelines here, that's all up to me as the patient...I'll start asking at all my stops about the exercises, and use the internet. I haven't been to the speech therapist yet (she's the swallowing coach), but she may very well be the jaw and tongue coach, also. Have to wait until my insurance approves it before I can see her.

    Thanks for the luck...I'm tucking it into my pocket...:)

    p

    I remember
    the worry the last few days before I started too, it's scary when you don't really know what's coming.

    I know it's close to impossible, but try not to worry too much. Once you've started, you'll hopefully feel that it's not as bad as you feared. At least that was the case for me. Before the going got tough late in the radiation treatment, I actually dreaded the needles more than anything else, blood samples every week, the IV for chemo etc... but I really really REALLY hate needles. When such a small thing as a little needle was so bad for me compared to the rest, I have to say both chemo and radiation was easier than I feared. I know I got lucky with very little side effects the first 4-5 weeks though, hopefully you will too :)

    Do you know what areas you'll get radiation to yet? Only the neck area? If you get radiation to the mouth area and/or saliva glands and won't have any dentist care to go to, I can drop by my hospital at the end of next week (currently out of town) and find out what kind of liquids they used on me and let you know how to use them. I live a 4 minutes walk from my hospital, so really do let me know if you want to get that info, it won't be a hassle at all :) What they did should be quite easy to do yourself in front of a mirror. Increased mouth and dental care is so important especially if your saliva production is reduced, as it plays a big part in keeping your mouth clean and reduce caries.
  • LeoS2323
    LeoS2323 Member Posts: 160
    #7
    Getting started is good
    Phrannie it will undoubtedly be tough but every day will be a day further on towards getting better.

    I have been misdiagnosed for 6 months as having a cyst and have now had to wait a further month from diagnosis to anything being done to start getting rid of it! All I can think about is if it's progressing while my doctors dawdle or I wait for them to get back from leave.

    The suspense is driving me nuts and the imagination is not doing me any favours! Desperate to start evicting my unwanted guest, just be glad you are serving notice now. Nobody seems to want to allow me into the house and all I can wonder is if he's smashing things up in the meantime!

    Loads of luck with your treatment

    Leo
  • pattyanny
    pattyanny Member Posts: 544
    #8
    Wow!
    Hi Phrannie, Once things get rolling, it sure goes fast! That is a good sign that all has been coordinated efficiently. The tube shouldn't be a problem. People have had them put in way down the road. You seem to be on top of it all!
    Glad you met Staceya - that must have been great! I have been wanting to sit down with someone from here face to face!
    I know you will do fine, just by your posts. Stay positive, and one day at a time. My prayers and good thoughts will be with you on the 16th and so forth.
    Now go kick some butt!
    Patty
  • ditto1
    ditto1 Member Posts: 660
    #9
    on the mark get set go
    glad to see you found your self a little closer to being healed, meaning you have to have a beginning to get to the end. I just sense what many have told us P51 and that once we get a plan we will actually feel stronger/not weaker...I just think you seem to already be showing signs of that strength. I saw the ENT doc today, he sit me up to go to a good hospital in town but not until the 30th of April... Praying for you my friend..
  • staceya
    staceya Member Posts: 720
    #10
    ditto1 said:

    on the mark get set go
    glad to see you found your self a little closer to being healed, meaning you have to have a beginning to get to the end. I just sense what many have told us P51 and that once we get a plan we will actually feel stronger/not weaker...I just think you seem to already be showing signs of that strength. I saw the ENT doc today, he sit me up to go to a good hospital in town but not until the 30th of April... Praying for you my friend..

    It was a blessing to meet
    It was a blessing to meet face to face.
    I am thinking of starting up a local H& N support group here.
    We could meet at the soup restaurant where Phrannie and I met.
  • phrannie51
    phrannie51 Member Posts: 4,716
    #11
    staceya said:

    It was a blessing to meet
    It was a blessing to meet face to face.
    I am thinking of starting up a local H& N support group here.
    We could meet at the soup restaurant where Phrannie and I met.

    Oh Stacey....I want us to form a support group...
    Having support from those who have gone thru treatment has been a God-send for me...just knowing that you, and a couple others from our area are only a phone call away puts solid footing under me on a daily basis...I was thinking maybe putting something in the Mountain Trader with my number...just a little ad might bring a few more survivors (or those currently in treatment) out of the woodwork that we don't know about.

    p
  • phrannie51
    phrannie51 Member Posts: 4,716
    #12
    ditto1 said:

    on the mark get set go
    glad to see you found your self a little closer to being healed, meaning you have to have a beginning to get to the end. I just sense what many have told us P51 and that once we get a plan we will actually feel stronger/not weaker...I just think you seem to already be showing signs of that strength. I saw the ENT doc today, he sit me up to go to a good hospital in town but not until the 30th of April... Praying for you my friend..

    Thank you for the prayers, ditto...
    you're my partner...my "seat-mate" on this bus :)...There is a difference in how I feel now that a plan has been laid...and there is a different type strength that comes from that...kinda of like the armenents have arrived at last, and now the battle will begin in earnest....not just in my head. The ball has started rolling for you...this will be your last long wait, then it's hold to your seat for a wild ride to the battle lines...

    p
  • Mrs. Sarge
    Mrs. Sarge Member Posts: 206 Member
    #13
    phrannie51 said:

    Thank you for the prayers, ditto...
    you're my partner...my "seat-mate" on this bus :)...There is a difference in how I feel now that a plan has been laid...and there is a different type strength that comes from that...kinda of like the armenents have arrived at last, and now the battle will begin in earnest....not just in my head. The ball has started rolling for you...this will be your last long wait, then it's hold to your seat for a wild ride to the battle lines...

    p

    On this new journey with you
    I've been diagnosed with Stage 1 Spindle-Cell Carcinoma of the vocal cords. I had it 1 1/2 yrs ago, Stage 0 with no treatment, other than surgery to remove it and CLOSE checking up. At my last checkup the Dr. saw another spot and biopsy verified. Monday I'm to go to 1st Oncology/Radiology consult and hopefully start radiation this week. I've read lots of the discussions on these boards and some frighten me to death and others encourage, but I know each one's journey is different! Prayers for all in this battle and I would appreciate any hints, tips, and warnings on radiation. I'm already going to call my dentist and see about the Flouride treatments and possibly a mouth guard. I want to be proactive. I guess I'm more worried about my hair and my teeth than anything. A friend loaned me a Vitamix so I can be prepared to make smoothies and things later on in my treatment. Wanted to get acquainted with all of you as I ride this bus with you all!
  • phrannie51
    phrannie51 Member Posts: 4,716
    #14
    Mrs. Sarge said:

    On this new journey with you
    I've been diagnosed with Stage 1 Spindle-Cell Carcinoma of the vocal cords. I had it 1 1/2 yrs ago, Stage 0 with no treatment, other than surgery to remove it and CLOSE checking up. At my last checkup the Dr. saw another spot and biopsy verified. Monday I'm to go to 1st Oncology/Radiology consult and hopefully start radiation this week. I've read lots of the discussions on these boards and some frighten me to death and others encourage, but I know each one's journey is different! Prayers for all in this battle and I would appreciate any hints, tips, and warnings on radiation. I'm already going to call my dentist and see about the Flouride treatments and possibly a mouth guard. I want to be proactive. I guess I'm more worried about my hair and my teeth than anything. A friend loaned me a Vitamix so I can be prepared to make smoothies and things later on in my treatment. Wanted to get acquainted with all of you as I ride this bus with you all!

    Welcome aboard, Mrs. Sarge...
    I'll scoot over and you can sit between ditto and I :), since we're just starting this trip, ourselves.

    There is a part of the super-thread for anyone just starting radiation...If I knew my laptop better, I could copy and paste it here for you, but alas...I have no clue how to do that on a laptop. I'm sure someone will read this, come to the rescue and do the copying and pasting for me.

    I'm sorry you had to join this club....but...I'm SO glad you did!!

    p
  • Mrs. Sarge
    Mrs. Sarge Member Posts: 206 Member
    #15
    phrannie51 said:

    Welcome aboard, Mrs. Sarge...
    I'll scoot over and you can sit between ditto and I :), since we're just starting this trip, ourselves.

    There is a part of the super-thread for anyone just starting radiation...If I knew my laptop better, I could copy and paste it here for you, but alas...I have no clue how to do that on a laptop. I'm sure someone will read this, come to the rescue and do the copying and pasting for me.

    I'm sorry you had to join this club....but...I'm SO glad you did!!

    p

    Thanks
    phrannie, I know having the connection with other soldiers in this fight will help us all!!

    This super-thread you're talking about, is it listed in the discussion boards or where can I look for it? TIA
  • phrannie51
    phrannie51 Member Posts: 4,716
    #16
    Mrs. Sarge said:

    Thanks
    phrannie, I know having the connection with other soldiers in this fight will help us all!!

    This super-thread you're talking about, is it listed in the discussion boards or where can I look for it? TIA

    I think it gets bumped up every Sunday...
    Sweetblood keeps it up to date, and organized...damn, I wish I could figure out how to copy and paste on my laptop...Let me see if I can find it, and direct you to the right page.

    p
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #17
    Mrs. Sarge said:

    Thanks
    phrannie, I know having the connection with other soldiers in this fight will help us all!!

    This super-thread you're talking about, is it listed in the discussion boards or where can I look for it? TIA

    SuperThread
    Here you go;

    SUPERTHREAD

    JG

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