hospitalized after treatment

lilwriter
lilwriter Member Posts: 13
in Head and Neck Cancer #1
Spent almost 4 weeks in hospital after radiation and chemo. Neutropenic? I don't know can't eat anything as throat feels like it's being ripped open by razor blades. Family just keeps forcefully telling me to eat in a disgusted voice and I explain I can't it's too painful. Hospital was comforting but I was afraid I wouldn't come out. Still in bad shape but no longer have a temperature. Still can't eat and it's 5 weeks past treatment. 4 chemo with cissplatin and 30 radiation treatments. I want to cry all the time because of the pain - drink water in the morning but by the afternoon it's just to painful to even swallow water. Will it ever come back? How long for you? Help!

Comments

  • RogerRN43
    RogerRN43 Member Posts: 185
    #2
    So glad to see your post
    I was thinking of you since your last post and wondering how you were doing and what happened.

    I too was hospitalized for 5days after my second chemo, although I had a stomach tube infection, it was changed and now I'm home.
    The chemo no doubt lowered my white cells and made me susceptible.

    Your family is only trying to be helpful but they cannot feel the pain. Only you know your pace. Since you are 5 weeks post, the radiation should have worn off by now. It can only heal from here on. It may feel like a slow process but it is going forward now. Do you have any MagicMouthwash or similar concoction to briefly numb the area so you can practice swallowing? Also, do you have any other form of pain control? Being on top of any pain around the clock is key.

    I imagine it might be hard to go by how long it's taken others and you shouldn't be dismayed if some are faster. I do know you will heal with time, keep the faith and keep working at it. It will get better and better.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #3
    PEG or Drugs...
    If you just can't handle it, there's always the PEG....

    You must be doing enough for the hospital to release you... I presume.

    Do you have and do you use pain meds and solutions?

    For me I had no PEG and it did hurt for about seven weeks, half way through rads and another few weeks after.

    My regime' was to set up a small glass of water with a ground up Percocet. One to two cans of Ensure Plus, a few sliced DelMonte Peaches in Light Syrup (to keep the throat swallow muscles working, or else you could lose the ability to swallow permanently)....and a very large glass of water.

    The first to go in was a teaspoon of Larry's (numbing solution). Next was the Ensure Plus, water, peaches, more water, and then the Percocet....

    I did this 2 - 3 times each day for nearly seven weeks....

    If you absolutely don't think you can, you better start looking at getting a PEG.

    Thoughts and Prayers,
    John
  • Puggle
    Puggle Member Posts: 88 Member
    #4
    It seems like the time right after treatment ends is the worst.
    It seems like the time right after treatment ends is the worst. My husband went through treatment without a PEG and did really well until the last week of rads and then for about 3 weeks after. During that period he barely ate anything and struggled to get down a couple of ensure or boosts a day. He was hospitalized for a week during that time period as well.

    I know a lot of people on the boards like the "magic mouthwash" but it didn't help him at all. He also tried a variety of different pain meds and none of them seemed to really make much difference. The only one that helped a bit was gabapentin which can act as a type of nerve blocker. He went through a period that even trying to drink a bit of water or eat a spoonful of pudding with his crushed up pills caused extreme pain. If your pain meds don't seem to dull the pain enough please talk to your doctor and have them try something different. Everyone's body reacts differently to meds. He also noticed that he could tolerate more in the morning and early part of the day so he tried to get as much nutrition in early in the day.

    The pain and difficulty eating improved slowly. Some things that worked for us: Time your meals around your pain meds so you can eat a bit when they start to kick in but before they make you too drowsy. Keep trying different foods. We found that one day he could tolerate mashed potatoes with gravy and then the next day it burned like crazy. Keep the food at room temperature, too hot or too cold is not good. Soft and bland is the key to start out. Mashed potatoes, macaroni and cheese, scrambled eggs, protein shakes, and creamy soups were the first "real" foods he could tolerate.

    I know at this point it's hard to believe but it does get better. My husband is now 3 months out and he is eating a much bigger variety. He still cannot tolerate a lot of spice but he can eat ketchup and tomato products in small quantities. He has eaten pizza, burgers, french fries, fish and is looking forward to eating some turkey and stuffing this week.

    Take care and keep us posted on how you are doing.
  • jtl
    jtl Member Posts: 456
    #5
    Puggle said:

    It seems like the time right after treatment ends is the worst.
    It seems like the time right after treatment ends is the worst. My husband went through treatment without a PEG and did really well until the last week of rads and then for about 3 weeks after. During that period he barely ate anything and struggled to get down a couple of ensure or boosts a day. He was hospitalized for a week during that time period as well.

    I know a lot of people on the boards like the "magic mouthwash" but it didn't help him at all. He also tried a variety of different pain meds and none of them seemed to really make much difference. The only one that helped a bit was gabapentin which can act as a type of nerve blocker. He went through a period that even trying to drink a bit of water or eat a spoonful of pudding with his crushed up pills caused extreme pain. If your pain meds don't seem to dull the pain enough please talk to your doctor and have them try something different. Everyone's body reacts differently to meds. He also noticed that he could tolerate more in the morning and early part of the day so he tried to get as much nutrition in early in the day.

    The pain and difficulty eating improved slowly. Some things that worked for us: Time your meals around your pain meds so you can eat a bit when they start to kick in but before they make you too drowsy. Keep trying different foods. We found that one day he could tolerate mashed potatoes with gravy and then the next day it burned like crazy. Keep the food at room temperature, too hot or too cold is not good. Soft and bland is the key to start out. Mashed potatoes, macaroni and cheese, scrambled eggs, protein shakes, and creamy soups were the first "real" foods he could tolerate.

    I know at this point it's hard to believe but it does get better. My husband is now 3 months out and he is eating a much bigger variety. He still cannot tolerate a lot of spice but he can eat ketchup and tomato products in small quantities. He has eaten pizza, burgers, french fries, fish and is looking forward to eating some turkey and stuffing this week.

    Take care and keep us posted on how you are doing.

    End of treatment
    It was also my experience that the last week of rad and the first week or so after was the worst. I am now about 2 1/2 weeks post rad and starting to feel better. My plan is to have a burger and fries by Christmas.
  • lilwriter
    lilwriter Member Posts: 13
    #6
    Thank you so much everyone.
    Thank you so much everyone. I have a feeding tube but they want the input at 60 and well I'm only at 35 as it makes me ill and then the throat hurts from thowing up. It does seem better early in the morning, if you can call that kind of pain better. I didn't try room temperature food, I'll have to do that - cold ice water can be painful and well heat is ubearable. They tell me I am not getting enough protein or food through the tube to make me heal. Believe me there is nothing I'l love more than a Whopper with every doggone calorie sticking to my hips! The 3 1/2 weeks in the hospital helped a little because they managed the pain, I can't seem to do that here at home.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #7
    lilwriter said:

    Thank you so much everyone.
    Thank you so much everyone. I have a feeding tube but they want the input at 60 and well I'm only at 35 as it makes me ill and then the throat hurts from thowing up. It does seem better early in the morning, if you can call that kind of pain better. I didn't try room temperature food, I'll have to do that - cold ice water can be painful and well heat is ubearable. They tell me I am not getting enough protein or food through the tube to make me heal. Believe me there is nothing I'l love more than a Whopper with every doggone calorie sticking to my hips! The 3 1/2 weeks in the hospital helped a little because they managed the pain, I can't seem to do that here at home.

    Meds
    If the meds aren't working ask for something different....

    They even prescribed Morphine (Liquid Roxanol) for me, but I didn't like it. It made me sick and did little for the pain.

    JG
  • Puggle
    Puggle Member Posts: 88 Member
    #8
    lilwriter said:

    Thank you so much everyone.
    Thank you so much everyone. I have a feeding tube but they want the input at 60 and well I'm only at 35 as it makes me ill and then the throat hurts from thowing up. It does seem better early in the morning, if you can call that kind of pain better. I didn't try room temperature food, I'll have to do that - cold ice water can be painful and well heat is ubearable. They tell me I am not getting enough protein or food through the tube to make me heal. Believe me there is nothing I'l love more than a Whopper with every doggone calorie sticking to my hips! The 3 1/2 weeks in the hospital helped a little because they managed the pain, I can't seem to do that here at home.

    Yes, what he said.... get new meds!
    I can't tell you how many different prescriptions for nausea and pain we had filled and then tossed because they didn't work or he couldn't tolerate the side effects. If you are throwing up a lot you are losing the nutrition you're managing to get in and run the risk of dehydration. Please talk to your doctors and try other meds. I'm surprised they didn't send you home from the hospital with a pain med that was at least similar to what you were getting while in there.

    Try making some protein shakes, you can get a lot of calories and protein into one glass. We made them differently depending on what could be tolerated at the time but mostly a mix of milk, vanilla ice cream, carnation instant breakfast (vanilla), whey protein powder, some benefiber and sometimes peanut butter or an ensure thrown in. You can let these sit for awhile to come down to room temp. My hubby basically survived on 3 of these a day for a couple of weeks and then eased into the soft bland foods.
  • Hondo
    Hondo Member Posts: 6,636 Member
    #9
    Puggle said:

    It seems like the time right after treatment ends is the worst.
    It seems like the time right after treatment ends is the worst. My husband went through treatment without a PEG and did really well until the last week of rads and then for about 3 weeks after. During that period he barely ate anything and struggled to get down a couple of ensure or boosts a day. He was hospitalized for a week during that time period as well.

    I know a lot of people on the boards like the "magic mouthwash" but it didn't help him at all. He also tried a variety of different pain meds and none of them seemed to really make much difference. The only one that helped a bit was gabapentin which can act as a type of nerve blocker. He went through a period that even trying to drink a bit of water or eat a spoonful of pudding with his crushed up pills caused extreme pain. If your pain meds don't seem to dull the pain enough please talk to your doctor and have them try something different. Everyone's body reacts differently to meds. He also noticed that he could tolerate more in the morning and early part of the day so he tried to get as much nutrition in early in the day.

    The pain and difficulty eating improved slowly. Some things that worked for us: Time your meals around your pain meds so you can eat a bit when they start to kick in but before they make you too drowsy. Keep trying different foods. We found that one day he could tolerate mashed potatoes with gravy and then the next day it burned like crazy. Keep the food at room temperature, too hot or too cold is not good. Soft and bland is the key to start out. Mashed potatoes, macaroni and cheese, scrambled eggs, protein shakes, and creamy soups were the first "real" foods he could tolerate.

    I know at this point it's hard to believe but it does get better. My husband is now 3 months out and he is eating a much bigger variety. He still cannot tolerate a lot of spice but he can eat ketchup and tomato products in small quantities. He has eaten pizza, burgers, french fries, fish and is looking forward to eating some turkey and stuffing this week.

    Take care and keep us posted on how you are doing.

    Hi Lilwriter
    Sorry to hear you are still having problems but just give it some more time. Like many others said take the pain pills when needed, hope you start to do better soon.

    Hondo
  • NJR
    NJR Member Posts: 82
    #10
    Pain
    I do believe that I have been where you are. I spent 3 weeks total this past summer in the hospital and 2 weeks in hospice. As my doctors told me, you are what Morphine is made for. Do not be embarrassed to tell them and do not worry about being addicted. Once conditioned to the strong opiates your dosage has to be periodically raised. At my low point if you will I was on alternating doses of morphine @5 mg IV, followed by 4 tsps oral solution, followed by a still unknown number of drops of the pure stuff, per hour. On top of that, I was on 100 mcg/h of Fentanyl, the latter of which is probably something you should ask about. It is incredibly expensive at about 100$ per patch but it is 100 times more powerful than morphine.

    The point is, even with my tumor pressuring a major cranial nerve, the pain can be controlled and according to my Doctors if you happen to have a doctor who believes in withholding pain meds for whatever reason, for a cancer patient it is time to find another doctor.

    As far as family goes and eating, they can be your worst enemy and all the while thinking they are doing you a favor. I found some literature that shut my family up and ended the nagging and trickery. If I can find it again I will post it for you. There is also a pamphlet written by a prominent Pharmacology expert for the VA that puts to rest the myths about pain killers for cancer patients that also shut an all knowing family member up instantly. I will try and find that too.

    Best wishes to you,
    Nick
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #11
    NJR said:

    Pain
    I do believe that I have been where you are. I spent 3 weeks total this past summer in the hospital and 2 weeks in hospice. As my doctors told me, you are what Morphine is made for. Do not be embarrassed to tell them and do not worry about being addicted. Once conditioned to the strong opiates your dosage has to be periodically raised. At my low point if you will I was on alternating doses of morphine @5 mg IV, followed by 4 tsps oral solution, followed by a still unknown number of drops of the pure stuff, per hour. On top of that, I was on 100 mcg/h of Fentanyl, the latter of which is probably something you should ask about. It is incredibly expensive at about 100$ per patch but it is 100 times more powerful than morphine.

    The point is, even with my tumor pressuring a major cranial nerve, the pain can be controlled and according to my Doctors if you happen to have a doctor who believes in withholding pain meds for whatever reason, for a cancer patient it is time to find another doctor.

    As far as family goes and eating, they can be your worst enemy and all the while thinking they are doing you a favor. I found some literature that shut my family up and ended the nagging and trickery. If I can find it again I will post it for you. There is also a pamphlet written by a prominent Pharmacology expert for the VA that puts to rest the myths about pain killers for cancer patients that also shut an all knowing family member up instantly. I will try and find that too.

    Best wishes to you,
    Nick

    Nick
    If you do find those links, that might be something useful to add to the superthread.
  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    #12
    lilwriter said:

    Thank you so much everyone.
    Thank you so much everyone. I have a feeding tube but they want the input at 60 and well I'm only at 35 as it makes me ill and then the throat hurts from thowing up. It does seem better early in the morning, if you can call that kind of pain better. I didn't try room temperature food, I'll have to do that - cold ice water can be painful and well heat is ubearable. They tell me I am not getting enough protein or food through the tube to make me heal. Believe me there is nothing I'l love more than a Whopper with every doggone calorie sticking to my hips! The 3 1/2 weeks in the hospital helped a little because they managed the pain, I can't seem to do that here at home.

    A minor point
    If you have a PEG tube, one inserted into your stomach, you can have them install an on/off switch (seriously) so that if you to have to vomit, you can open the valve and have it go out THAT way rather than via mouth. Sometimes it is in the details :).

    Best wishes for a full recovery.

    Hope and Humor!

    Take care,

    Joe
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #13
    sweetblood22 said:

    Nick
    If you do find those links, that might be something useful to add to the superthread.

    Some Related Links
    Here are a few I found...

    Cancer-Pain.ORG


    Cancer Pain MAYO

    Myths & Facts About Cancer Pain Management

    Pain Expert Punctures Myths - MD Anderson

    Life After Cancer Treatment - National Cancer Institute


    JG
  • Hondo
    Hondo Member Posts: 6,636 Member
    #14
    Skiffin16 said:

    Some Related Links
    Here are a few I found...

    Cancer-Pain.ORG


    Cancer Pain MAYO

    Myths & Facts About Cancer Pain Management

    Pain Expert Punctures Myths - MD Anderson

    Life After Cancer Treatment - National Cancer Institute


    JG

    Hi John
    I like the article from the Mayo clinic, just wish that Dr Moynihan was at the one in AZ rather than in Rochester.

    Thanks for the links
    Hondo
  • osmotar
    osmotar Member Posts: 1,006
    #15
    Skiffin16 said:

    Some Related Links
    Here are a few I found...

    Cancer-Pain.ORG


    Cancer Pain MAYO

    Myths & Facts About Cancer Pain Management

    Pain Expert Punctures Myths - MD Anderson

    Life After Cancer Treatment - National Cancer Institute


    JG

    Great Links
    Thanks for sharing!!!!

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