I'm trying really hard here

zipperneck2012
zipperneck2012 Member Posts: 27
in Head and Neck Cancer #1
But I'm wondering if it's time for a feeding tube :*(. I only have one more week of treatment, but then a few weeks of healing and I can barely get down sips of water. Even ensure/boost is brutal....I've even tried it in popsicle form.

I'm overweight, so I do have some weight I can stand to lose, but I'm more concerned with the ability of my body to heal without proper nutrition.

My doctor put me on liquid morphine for the pain so that I could eat, but it makes me vomit. I was able to get down a shake yesterday after taking the morphine, but a few hours later threw it all up as well as a little blood from my damaged esophagus.

I tried taking phenegren for the nausea, and threw it up as well.

My doctor said if the morphine didn't work, we were looking at a feeding tube :(

I've had well under 1,000 calories this week and they had to give me 1.5 litres of IV fluids on Wednesday because I was dehydrated.

Am I really at that point?? I went into this telling myself I would not get a feeding tube, and I've been trying so hard, but one sip of ensure brings me to tears. I'm not sure what to do here....are there any other options??? :/

Comments

  • Laralyn
    Laralyn Member Posts: 532
    #2
    Take a deep breath...
    ...and don't beat yourself up. You made your decisions with the best of intentions, and nothing about how you got here is your fault. There is no failure here--you're a warrior fighting cancer and winning the overall war regardless what happens with the feeding tube.

    Everything I have read says that nutrition and hydration play a vital role in the weeks after treatment (as well as during). If you have the option to get the tube and you need it, IMO I wouldn't hesitate. Every day you wait is a day you're weaker and need it more. I've also read it doesn't end when the treatment ends because you "cook" for at least a couple weeks afterward.

    Ask your doctor what he thinks is the most reliable way to get food and water into your system for the next 3-4 weeks. Some chemo centers will let you come in every day for hydration, and they do make IV nutrients. Maybe you can go in a couple times a day for that, if your doctor doesn't think you need the tube?
  • MarineE5
    MarineE5 Member Posts: 1,034 Member
    #3
    Agree with Laralyn
    ZN2012,

    I agree with Laralyn, don't beat yourself up here. There are many people that were either told that they would not need the PEG Tube or choose not to get it from the beginning and ended up with it. I was not given a choice, I had part of my tongue removed along with a Radical neck disection, and Thrach. So the PEG was a must in my Surgeon's eyes.

    As you mentioned, you have one more week to go, then we do "Cook" for a few more weeks after our last treatment. The choice is yours and your Doctor's. Can you make it another week or weeks without the Tube? can you make it another Day?

    Is the problem the pain med's? is the Ensure room Temperature? Anything that you put in your body right now should be room temperature. Your throat is as tender as a new born baby. Have you been using the Baking soda and Salt solution to rinse and gargle with? again room temperature? Before eating, I would do the solution to semi-numb my mouth and throat. I would swallow a small amount of the solution after rinsing and gargling and then spitting most of it out. That little bit helped.

    The last few weeks of treatment, I was given Nuerotin(sp) and it helped. I weaned myself off of it shortly after my last treatment.

    The important issues are what you already know, Hydration, Nutrition, and Calories. Do what ever it takes to get healthy that is the main goal.

    My Best to You and Everyone Here
  • ooo
    ooo Member Posts: 105
    #4
    Zippy!! =)
    I thought of you
    Zippy!! =)

    I thought of you these days and wondered what you were up to!

    So, feeding tubes.. for me right now, not getting a feeding tube is a big motivator to eat as much as I can. I see it as a healthy challenge. BUT sometimes healthy challenges become dangerous one. Don't let that happen to you.

    After reading enough stories on this board it seems to me that the only scary thing about feeding tubes is that they are so convenient that some people stop using their mouths and loose the ability to swallow. Feeding tubes are that good.
    This is one of the videos that made me comfortable with the idea of having a feeding tube.
    http://www.youtube.com/watch?v=yBzy3tHOps0

    I am not a doctor and I don't know how appropriate it is to insert a PEG tube now, but it seems like a good option to me. If I were you I would ask my doctors to get one unless they have some serious argument against it.

    Fight smart, Zippy, you're almost done with treatment!
  • jtl
    jtl Member Posts: 456
    #5
    You will likely have a sore
    You will likely have a sore throat for at least a month post radiation. Mine was the worst starting a week after the last session of rt. If you cannot eat by mouth at this point a PEG may be your best bet. Some can avoid it and some cannot but do not compromise your health.
    John
  • phrannie51
    phrannie51 Member Posts: 4,716
    #6
    ooo said:

    Zippy!! =)
    I thought of you
    Zippy!! =)

    I thought of you these days and wondered what you were up to!

    So, feeding tubes.. for me right now, not getting a feeding tube is a big motivator to eat as much as I can. I see it as a healthy challenge. BUT sometimes healthy challenges become dangerous one. Don't let that happen to you.

    After reading enough stories on this board it seems to me that the only scary thing about feeding tubes is that they are so convenient that some people stop using their mouths and loose the ability to swallow. Feeding tubes are that good.
    This is one of the videos that made me comfortable with the idea of having a feeding tube.
    http://www.youtube.com/watch?v=yBzy3tHOps0

    I am not a doctor and I don't know how appropriate it is to insert a PEG tube now, but it seems like a good option to me. If I were you I would ask my doctors to get one unless they have some serious argument against it.

    Fight smart, Zippy, you're almost done with treatment!

    Switch your determination from not getting a tube...
    to not becoming dependent on that tube...you seem to be very good at meeting personal challenges....so a little switch in determination is in order.

    Next time your Dr. says "feeding tube", say yes......then tell yourself "I will only use it till I can swallow again"...You need the nutrition....it's VITAL....

    p
  • aluo1271
    aluo1271 Member Posts: 25
    #7
    Zipperneck, sorry to read
    Zipperneck, sorry to read your post. I admire you've gotten so far while fight with intense swallowing pain and constant nausea. I don't have experience as I am about to start the journey next week but you have my best wishes and prayer for getting through this difficult time.
  • zipperneck2012
    zipperneck2012 Member Posts: 27
    #8
    aluo1271 said:

    Zipperneck, sorry to read
    Zipperneck, sorry to read your post. I admire you've gotten so far while fight with intense swallowing pain and constant nausea. I don't have experience as I am about to start the journey next week but you have my best wishes and prayer for getting through this difficult time.

    Update
    Well, they had mentioned the feeding tube a few days ago, but when I saw them today they said I would do much better if I could manage without it. The gave me more IV fluids and some different anti-nausea medicine and told me to take my morphine at smaller intervals. They said if I still have problems this weekend, to go to the ER for more fluids and they'll switch me to a different narcotic on monday. He said the next 3 weeks will be the hardest, but I'm so close that if I can get through it I'll do much better than if I were to get the tube....so I guess for now I keep truckin....but I'm gonna cry like a baby if I throw up again. That can't be good for my poor throat!
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #9
    zipperneck2012 said:

    Update
    Well, they had mentioned the feeding tube a few days ago, but when I saw them today they said I would do much better if I could manage without it. The gave me more IV fluids and some different anti-nausea medicine and told me to take my morphine at smaller intervals. They said if I still have problems this weekend, to go to the ER for more fluids and they'll switch me to a different narcotic on monday. He said the next 3 weeks will be the hardest, but I'm so close that if I can get through it I'll do much better than if I were to get the tube....so I guess for now I keep truckin....but I'm gonna cry like a baby if I throw up again. That can't be good for my poor throat!

    I can see their logic
    every day is one day closer to coming out the other side. You will make it. There are alternatives to the morphine if it continues to make you sick.


    Pat
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #10
    longtermsurvivor said:

    I can see their logic
    every day is one day closer to coming out the other side. You will make it. There are alternatives to the morphine if it continues to make you sick.


    Pat

    Food is health and healing
    I vote for the tube. My docs suggested I have on at the beginning ...as much as I did not want one ....I'm glad I did.. I lost 70lbs WITH THE TUBE!!!!

    You must have food. I vote for the tube zipperneck....only bc you asked our opinion. Remember ...you "cook" for weeks after your last treatment. It will get harder before it gets easier...but of course you can handle it ....but no need for the pain.

    Best to you my friend ..

    Tim & Jennifer / Idaho
  • francma
    francma Member Posts: 69 Member
    #11
    Listen to your doctor
    You need to go with what your doctor advises. I had a feeding tube and I would have probably starved to death without it. I could not afford to lose any weight but regardless, your body needs the nutrients! I also needed to have water for I too was dehydrated at one point with very low blood pressure. It may have been hard for me to eat and drink once again but I am now back to "normal" eating. It took alot of patience and much support. Remember not to be too hard on yourself, as I admit to that. Many prayers being said for you...You WILL get through this!! God Bless

    Fran~

Discussion Boards